Breast cancer is the most common cancer affecting women, and surgery – either to the breast and/or the underarm area – is the main treatment. There are two main types of breast operation: a mastectomy (removal of the whole breast) or a lumpectomy (removal of the cancerous lump) which is a breast-conserving surgery. The lymph nodes in the armpit can also be affected and it is common for women to also have a procedure for partial or complete removal of lymph nodes
How common is pain after surgery?
One of the first UK studies of chronic pain after mastectomy was conducted in Scotland in 1999. Over 400 women were surveyed at three years after their breast cancer surgery and 43 per cent still reported pain in the chest and upper arm. Many women reported problems with everyday activities, such as lifting bags, turning the steering wheel when driving and doing household tasks. For some women, the painful symptoms had started fairly soon after their operation; for others, symptoms had started later, possibly relating to radiotherapy and chemotherapy treatments.
Six years later, the same women reporting painful symptoms were resurveyed to find out whether they had recovered. About half of the women with pain at three years were, by then, pain-free; the other half still had pain (on average seven to nine years after their mastectomy). Of those still with pain, the women reported that they had ‘learned to live’ with their painful symptoms – many had tried alternative therapies.
The researchers then conducted another study across Scotland to understand more about the type of pain experienced both before and after breast cancer surgery. They assessed another 400 women before their breast cancer operation and very few reported chronic pain in the breast and upper body. After surgery, over half of the women reported moderate- to severe-intensity acute pain in the first week after surgery. Based on the ‘before’ findings, this pain was not a continuation of any existing pain. The researchers found that, of the 400 women surveyed, those who had more severe acute pain after surgery were more likely to have chronic pain at four and nine months after their operation. This suggests that if healthcare professionals could better control and treat pain immediately after the operation, they may reduce the proportion of women going on to suffer with chronic painful symptoms.
Nerve and phantom pains
Women with neuropathic pain (nerve pain) use terms such as ‘stabbing’, ‘burning’, ‘tingling’, ‘shooting pain’ or ’numbness’ to describe their symptoms. Surgeons may have to dissect branches of the main nerve running through the underarm when removing the tumour and surrounding tissue – this is unavoidable, but may be partly responsible for some symptoms.
Although neuropathic pain is the most common type of pain reported after breast cancer surgery, some women also experience phantom breast pain. Phantom pain is pain that seems to come from an amputated limb, breast or other body part. Phantom sensations after mastectomy might not involve pain, but there are reports of 17 per cent of women up to six years after surgery having phantom breast pain.
What are the risk factors?
Certain groups of women may be more at risk from chronic pain after their breast surgery than others.
Firstly, younger women do seem to be at greater risk of chronic pain than older women – this has been found after many different operations. This finding might be partly explained by the fact that younger people are often more active and are working, thus having persistent pain could have a greater impact on their daily life compared to older people who are perhaps less active. Or it may relate to nerve and tissue changes (how the body reacts to pain) as we get older.
There is recent evidence to show that women with other chronic pains are at greater risk of having chronic pain after their breast cancer surgery. This may include people who suffer from such conditions as chronic low back pain, irritable bowel syndrome, migraine, fibromyalgia and perhaps several other conditions as well. Changes in the nervous system may well lie behind many of these conditions. The field of pain genetics has also suggested that some people may be more susceptible to pain conditions than others.
It is entirely expected that women will be worried and fearful of their future when faced with a cancer diagnosis and impending surgery. Women who are very anxious and worried about their operation are at higher risk of both acute and chronic pain after surgery – so excessive worry and anxiety is a risk factor. This has been found with other operations, not just breast cancer surgery. It is important that support and information are offered to patients to help manage these feelings.
Preoperative preparation is vital; for example, a clear explanation about the operation and recovery process setting out the risks (and benefits) should be undertaken as standard practice.
Finally, one of the strongest and most consistent risk factors for chronic pain after surgery is the severity of acute pain in the days and weeks after an operation. Treatment and adequate control of acute pain immediately after surgery is very important and may ‘dampen’ the pain response, preventing longer term symptoms. Again, there is emerging evidence to suggest that women reporting pain with neuropathic characteristics (such as stabbing, tingling and numbness) in the early period after surgery may be at greater risk of having these symptoms persist in the longer term.
Treatment
Long-term pain after breast cancer surgery is treated in much the same way as other postsurgical pain. Some pain-relieving drugs may not be suitable if women are taking long-term hormone treatment. Refer to the leaflet ‘Chronic Pain after Surgery’ for more details.
Better understanding
An earlier version of ‘Chronic Pain after Surgery’ reported widespread misdiagnosis of pain after breast surgery. There are now many hundreds of articles from around the world reporting that painful symptoms after breast cancer surgery are common, disabling and can be challenging to treat. More is known about the types of surgery that may increase the risk of post-operative chronic pain e.g. surgery to remove all the lymph nodes under the arm (axilla).
Research studies now include larger numbers of patients than the early surveys. One of the largest studies ever conducted was undertaken in Denmark, where almost every breast cancer surgery patient in the country was followed-up two years after their operation. The research team found that out of over 3200 women, half still had pain in more than one area related to their operation, and 58 per cent reported sensory disturbances, such as numbness or sensitivity to touch. Overall 25 per cent of women had moderate to severe pain two years after their surgery. The study also revealed that many women suffering symptoms were under-treated and had poor pain relief and symptom control. This was a hugely important study and was published in the Journal of the American Medical Association (JAMA), one of the highest ranking medical journals. This publication has helped to increase recognition and raise awareness of the condition amongst doctors and healthcare professionals.
Professor Bruce is based at the Warwick Clinical Trials Unit, University of Warwick.
If you would like to know more about the sources of evidence consulted for this publication, please click here.
What is chronic post-surgical pain? How common is it? How is it treated? Professor Julie Bruce & Professor Stephan Schug explain
What is chronic post-surgical pain?
Let’s start with some definitions – acute postoperative pain is the pain experienced immediately after an operation, usually lasting for days or sometimes weeks – this is entirely normal and expected. The surgical incision and surrounding area can be inflamed and tender – again this is fairly normal and is important for wound healing, where tissues and muscles repair themselves after injury.
Chronic pain is normally considered to be pain that persists or keeps coming back for more than three months or for longer than the expected healing time. Chronic pain that develops after an operation is often known as ‘chronic or persistent post-surgical pain’.
Knowing when pain becomes chronic after surgery is especially difficult because many people have had their surgery to treat a painful condition, such as a painful hernia or a long-standing back problem. Is the pain simply a continuation of the old pain, or is it new? And, even if it is new, is it related to the surgery?
Sometimes it is obvious that something has changed – nerve damage after an operation for hernia repair can be quite different from the discomfort felt before the operation. Another example is persistent tingling nerve pain in the chest wall after heart bypass surgery, which is very different from angina pain experienced before heart surgery.
Sometimes it is very difficult to tell the pains apart, especially if the original pain (that the operation was done to treat) was not in fact helped by the surgery. However, these are the features that can allow doctors to tell if you have chronic post-surgical pain:
The pain develops after a surgical operation
The pain lasts for at least three months after the operation
Your pain is not thought to be from other causes, such as an infection or cancer
Your pain is not the same as the pain from the original condition.
Surgical follow-up can be limited to one postoperative appointment, thus a follow-up clinic at approximately 8 weeks, to determine surgical ‘success’. Patients are then discharged and managed by the primary care team.
What type of pain is it?
The type of pain can depend on the operation itself, because the painful symptoms often relate to the distribution of nerves in the area of the operation. For example, after groin hernia repair surgery, people have reported pain down the front and inside of the thigh, or in the testicles. This may relate to potential irritation of nerves in the groin during surgical repair of the hernia.
We now understand more about nerve pain or ‘neuropathic pain’ which can arise from nerve injury. Typical characteristics and descriptions of neuropathic pain include stabbing, tingling, numbness, altered sensations and problems with sensitivity. It is not always possible to avoid nerve damage during an operation, especially during cancer surgery when removal of the tumour takes priority.
Treatment of chronic post-surgical pain
Treatment does not depend upon what sort of surgery you have had but rather on the mechanism that results in you having the persistent pain. For example, not everyone who suffers pain following a mastectomy will have the same ‘type’ of pain or for the same underlying reason. The treatment will depend on the characteristics of the pain and also the possible reason for the pain developing and not on the fact that the surgical operation happened to be a mastectomy.
It is important that the healthcare professional listens to your story, performs a thorough examination and allows you to give a full explanation of your symptoms. The healthcare professional then gains an understanding of the problem and the impact the pain has on your daily life. Patients often report finding this approach helpful in itself. Often they feel that, in the past, their symptoms have been dismissed and not taken seriously. Sometimes, people have been told that the pain will go away soon after the operation and this causes mistrust and resentment.
The best treatment for the pain will depend upon the mechanism causing it. Treatments include: tricyclic antidepressants, anticonvulsants, painkillers, TENS (transcutaneous electrical nerve stimulation) and injections. Based on our clinical experience, nerve destruction (peripheral nerve ablation) should not be used in the management of chronic post-surgical pain.
It is not always possible to control the pain and other symptoms adequately. In such cases, a psychology-based pain management approach or physiotherapy support can help you to cope with your symptoms and reduce the impact on your daily life.
How common is it?
A survey asked over 5,000 patients attending pain clinics across Scotland and the north of England carried out in the late 1990s about their reasons for attendance. Twenty per cent of patients thought that surgery was one of the causes of their pain and, of these patients, half thought it was the only cause. Until this report was published, chronic pain after surgery was thought to be rare. This is possibly because few patients were asked about persistent pain after their operation.
On average about 30 per cent of patients experience chronic pain after surgery, although this ranges from those with mild symptoms to those with more severe pain. Overall, only about five per cent of people report severe intensity pain, but five per cent is a significant number when you consider the huge number of operations conducted across the UK and globally.
Are there risk factors?
We are beginning to understand more about risk factors for chronic post-surgical pain. As well as the impact on quality of life for those affected, chronic pain is difficult and costly to treat, so understanding more about who is at risk of developing chronic pain after surgery is important as it may help in preventing the condition.
Certain groups of patients may be more at risk from pain after surgery than others. Women are more likely to experience chronic pain than men, although this is not always the case after surgery. Studies suggest women are more likely to report more severe acute postoperative pain, but the evidence for chronic pain is less certain.
Younger patients do seem to be at greater risk of chronic post-surgical pain than older patients – this has been found after many different operations. This finding might be explained by the fact that younger people are often more active and are working, thus having persistent pain could have a greater impact on their daily life compared to older people who are often less active. Or it may relate to nerve and tissue changes (how we react to pain) as we age.
People with other chronic pains are at greater risk of developing chronic pain after surgery. This may include patients who suffer from such conditions as chronic low back pain, Raynaud’s disease, irritable bowel syndrome, migraine, fibromyalgia and other conditions. Changes in the nervous system may well lie behind many of these conditions. There is growing research on the genetics of pain, suggesting that some patients may be more susceptible to pain conditions than others.
Patients who are more anxious and worried about their operation are at greater risk of acute and chronic postoperative pain – so excessive worry and anxiety is a risk factor. Preoperative preparation is vital; for example, a clear explanation about the operation and recovery process setting out the risks and benefits is an essential part of surgical treatment. Many hospitals run preoperative clinics whereby patients attend for tests in advance of their operation. This is an opportunity for careful explanation and discussion between the patient and health care team.
Finally, one of the strongest and most consistent risk factors for post-surgical pain is the severity of acute postoperative pain in the days and weeks after an operation. Treatment and adequate control of acute pain immediately after surgery is very important and may ‘dampen’ the pain response, preventing longer term symptoms.
More awareness needed
It is clear that chronic post-surgical pain is common, can be severe and may result in distress and disability for patients. Looking at the whole spectrum of chronic pain conditions after surgery, it is very unlikely that the cause of the pain is something that the surgeon has done wrong. It seems more likely that this is the inevitable result of surgery in a certain percentage of patients – approximately 30 per cent of patients experience chronic post-surgical pain of varying severity in the first year after an operation.
If it were more widely accepted that chronic pain can arise after surgery, some patients might decide against having operations that aren’t entirely necessary. Surgeons, who are undoubtedly trying to do the best for their patients, would also be reassured that pain is probably not the result of surgical error. Another benefit is that patients would have their pain acknowledged and would be treated more sympathetically.
Over the last 30 years, there has been a huge increase in medical research investigating the characteristics and potential causes of chronic pain after surgery – this has helped raise awareness amongst healthcare professionals and patients alike. There is still, however, much more work to be done to improve our ability to prevent people from developing chronic pain after surgery and to make sure everyone affected by this all too common condition receives swift diagnosis and treatment.
Finally, let’s look at some examples of different operations…
Pain after hernia surgery
Inguinal (groin) hernia is a common condition with an incidence of six per cent to 12 per cent in adult males. It affects men more often that women. The condition presents as a lump in the groin, due to a protrusion of intestine through a weakness in the abdominal wall in the groin. This lump can affect daily activities and is often, but not always, painful.
Surgery to repair inguinal hernia is one of the most commonly performed operations. Some surgeons use key-hole or laparoscopic surgery rather than an open incision. A mesh is often used to repair the abdominal wall weakness, secured in places either using stiches, penissleeve glue or staples. There is a small risk that the nerves in the groin can become irritated or inflamed by the implant or internal stiches.
Chronic pain after inguinal repair surgery is now a well-recognised condition – it is one of the most widely reported surgical conditions with hundreds of articles reporting prevalence of up to and around 30 per cent. Approximately 5 to 10 per cent of patients report pain after their hernia operation that interferes with daily living. There is now guidance recommending that it is safe for surgeons to ‘watch and wait’ with some patients who have a small pain-free lump, as long as the hernia doesn’t impact too much on their daily activities.
Pain after chest surgery
When you consider what is involved in surgically opening the chest (thoracotomy), it is not surprising that many patients suffer long-term pain afterwards. In order to gain access to the chest, the surgeon has to either remove part of a rib or spread the ribs apart. This inevitably causes damage to bone and nerves lying along the ribcage.
Experience suggests that many of the worst pain syndromes may be caused by partial nerve injury – thus it may be that a ‘clean’ cut of the nerve has a better long-term outcome, although this can result in numbness and loss of sensation. Although pain after chest surgery is fairly common, the severity of pain varies. In one study, 15 per cent of patients with chronic pain after chest surgery were sufficiently troubled to warrant referral to a pain clinic.
Pain after amputation
Pain after limb amputation is a well-recognised post-surgical pain condition. After limb amputation, the pain can be either stump pain or phantom pain (pain felt in the limb that is no longer there). In stump pain, patients often report a tender spot on the stump and this has led many surgeons to perform further operations to try and find the cause. Patients in the past have frequently had further amputations in the mistaken belief that this would cure the problem. Such operations rarely help stump pain and sometimes make it worse or make it more difficult for the patient to wear an artificial limb.
Phantom limb is a feeling or sensation that the limb is still there, this is normal and does not require treatment. But phantom limb pain (pain in the limb which is no longer there) can affect between 50 to 85 per cent of amputees. It usually starts in the first few weeks after surgery. Studies suggest that painful phantom symptoms can last between one hour and 15 hours a day and can vary between five days a month and 20 days. Pain severity can also be very variable.
It is now acknowledged that children get phantom limb pain and that people born without limbs also suffer from it. Recent research has shown that part of the pain after amputation arises due to activity in the brain itself and this underlines the futility of methods of treatment aimed directly at the stump.
Other chronic post-surgical pain syndromes
Other operations with known risks of chronic pain include vasectomy, joint replacement surgery, spinal surgery for back pain and breast surgery for cancer treatment. Other leaflets in this series discuss strategies for the management of chronic pain.
Professor Bruce is based at the Warwick Clinical Trials Unit, University of Warwick.
Professor Stephan Schug is based at the University of Western Australia, Perth, WA.
This leaflet is an update of a previous leaflet published by Dr Bill Macrae, now retired.
If you would like to know more about the sources of evidence consulted for this publication, please click here.
We all know that what we eat can affect our health. New research, however, shows that there may be a specific link between diet and pain. Pain specialist Dr Rae Frances Bell tells us more, and outlines steps you can take to improve your diet as part of your pain management regime
It’s very important for people with chronic pain to maintain a healthy, balanced diet. There are several reasons for this. Firstly, the nervous system has the capacity to dampen pain. Most people have heard of the body’s own morphine-like substances called endorphins. In order to be able to function optimally, the nervous system requires specific nutrients such as essential amino acids. One example is tryptophan, which is a building block in the synthesis of the neurotransmitter serotonin which is very important in the body’s own pain-dampening systems. Foodstuffs such as nuts/seeds, fish, eggs, beans, oats, chicken and turkey contain high levels of tryptophan.
On the most basic level, the nervous system needs nutrients. Certain vitamin deficiencies can cause pain problems. For example, vitamin B12 deficiency can cause very unpleasant peripheral polyneuropathy, which is nerve pain in both feet and also sometimes in the hands. Vitamin D deficiency can cause musculoskeletal pain, as can vitamin C deficiency.
Omega-3 and Omega-6
The World Health Organisation published a report in 2003 which described how there has been a global shift in diet resulting from different factors such as industrialisation and market globalisation. Our diet has changed from being predominantly plant-based to more high-energy density and processed foods, including a substantial increase in the intake of saturated fats and sugars. One factor the report focused on was the balance between dietary intake of omega-6 fatty acids and omega-3 fatty acids. The ‘ideal’ ratio between these fatty acids is thought to be 1:1, while ratios under 5:1 have been associated with reduced risk for heart disease, cancer and auto-immune inflammatory conditions.
However, in the average American diet today, the intake of omega-6 is around 15 to 25 times the intake of omega-3. Foods containing relatively high levels of omega-3 are cold water oily fish such as mackerel, herring and salmon, fish oil, flax seed and flax seed oil; while omega-6 is plentiful in poultry, and in many vegetable oils, especially soybean oil. Soybean oil is used in the production of fast food and snacks and I think this widespread use has particularly contributed to high levels of omega-6 in our diet.
Omega-6 has been linked to inflammation, which is something we need to aid healing in our body. But an exaggerated inflammatory response creates its own problems. Omega-3 has anti-inflammatory effects. Research has found that increased dietary intake of omega-3 reduces joint pain, morning stiffness, number of painful joints and consumption of non-steroidal anti-inflammatory drugs in patients with rheumatoid arthritis. The balance between these fatty acids in our diet is thought to be important. So one thing for pain patients to pay attention to with regard to diet is to ensure they have a sufficient intake of omega-3 while avoiding excessive intake of omega-6.
A number of foods contain substances which have anti-inflammatory properties, just like non-steroidal anti-inflammatory drugs. For example, in virgin olive oil, there’s a compound called oleocanthal, which has been shown to have anti-inflammatory and pain relieving effects similar to ibuprofen. This is really interesting because non-steroidal anti-inflammatory drugs can have a lot of side effects. If we can achieve some anti-inflammatory and pain-relieving effects through eating healthily that would be ideal.
Antioxidants
Antioxidants have anti-inflammatory effects and are found in many foodstuffs. Resveratrol is an antioxidant which is formed in certain plants when they’re under attack by bacteria or insects. It’s found in the skin of red grapes, and in red wine and grape juice, and it has powerful anti-inflammatory and neuroprotective effects. Antioxidants called anthocyanins are found in the reddish-blue pigments in blueberry skins and cherries and in animal studies have been shown to reduce inflammatory pain.
Unfortunately there is a lot of hype in the media about antioxidants, with multiple advertisements telling us to buy antioxidant products. You actually don’t need a huge intake and the best way to get antioxidants is through your diet, not through pills.
I think most people know whether their diet is healthy or not. If we’re busy and just snacking instead of eating regular meals, it’s not good enough. We need to be getting vitamins; we need to be eating more fish, less red meat and lots of fresh vegetables, especially green leafy and brightly coloured vegetables. It’s the colour pigments which contain the antioxidants, so if you think of a colourful, Mediterranean kind of diet then you’re on the right track.
Foods to limit
Some foodstuffs can increase pain. Professor Guy Simonnet and colleagues in Bordeaux have done interesting scientific research on polyamines. Polyamines are important for cell growth and we obtain most of our polyamines through the diet. Polyamines upregulate activity in a receptor in the nervous system which is involved in amplifying pain and a polyamine deficient diet has been shown in a rat study to reduce pain hypersensitivity. Oranges and orange juice contain very high levels of polyamines. That doesn’t mean you should stop drinking orange juice, it just means you should probably think twice before drinking large quantities on a daily basis. Peanuts and potato crisps also contain high levels of polyamines.
Some pain-relieving medications contain caffeine because it interacts with analgesic drugs and can increase the effect of paracetamol and aspirin. But caffeine has other attributes that are actually harmful and regular moderate to high intake of coffee or other drinks containing caffeine can cause problems. Caffeine blocks the effects of the body’s own relaxatory neurotransmitter adenosine. Everyone knows that coffee can disturb sleep. If you have chronic pain and sleep poorly, you will feel more pain. If coffee is consumed on a regular basis, it can also increase the risk of developing a chronic daily headache.
High levels of caffeine are linked to osteoporosis, so if you drink more than four cups of coffee a day your risk of developing osteoporosis increases. This is also the case for other caffeinated beverages such as cola and “energy” drinks. In addition to flavouring, sugar or sugar replacement and water, cola contains phosphoric acid and caffeine. The taste might be nice, but there is nothing else positive about cola. A regular high intake of cola or “energy” beverages can cause sleep problems and increase the risk of osteoporosis in the same way as coffee due to the high caffeine levels.
What to eat
At our pain clinic we regularly ask our patients what they eat. We started doing this more than 20 years ago and quickly discovered that many of them had a poor or sub-optimal diet. There can be different reasons for this – some pain patients suffer depression and have reduced appetite, or they simply don’t feel up to preparing meals. Most are unaware that diet plays a role in pain and that it is especially important for chronic pain patients to have a healthy, balanced diet. By bearing in mind some of these simple principles you may find ways to make the food you eat an important part of your pain management plan:
Pain patients should include foods rich in omega-3 in their diet and be careful with regard to foods rich in omega-6. Swapping dietary vegetable oils high in Omega-6 fatty acids (such as soybean, safflower or sunflower oils) with oils high in Omega-3 fatty acids (such as rapeseed or flax oils) or monounsaturated oils such as olive oil will help optimise the Omega-6/Omega-3 fatty acid ratio, as will eating more fish and less red meat. Think about getting antioxidants through eating colourful meals with fresh vegetables, fruit and berries. Cut out all kinds of cola or “energy” beverages. Reduce your daily consumption of coffee. Don’t drink coffee (unless it is decaffeinated) after midday if you have sleep problems.
Eat regular meals with no more than 4 hours interval- For example, 3 main meals + two light snacks and don’t skip breakfast. Eating regularly is especially important for patients with chronic headache.
If you feel you need to lose weight, ask your GP for a consultation with a dietician. They will probably advise you to cut down on saturated fats, sugars, processed foods and snacks, and to eat more fresh vegetables and protein.
Get enough vitamins through your diet. Vitamin B12 or cobalamin is abundant in shellfish, fish, egg yolks, beef, lamb and cheese.
Nearly a thousand people over 65 took part in a study to see if there was any connection between the amount of vitamin D they had in their blood stream and their experience of back pain. There was no relationship in men, but women who had less than a third the levels of vitamin D considered healthy by most experts experienced significant back pain, suggesting that women may be more vulnerable to vitamin D deficiency-related pain. A recent systematic review found a high prevalence of Vitamin D deficiency in patients with low back pain. We get vitamin D from sunlight, so in the winter most of us need a supplement in the form of cod liver oil or vitamin D tablets. Margarine and milk products are often fortified with vitamin D.
Vitamin C is an antioxidant with anti-inflammatory effects. As mentioned above, Vitamin C deficiency can cause musculoskeletal pain. In addition, research seems to suggest that a deficiency of Vitamin C may be a significant factor in the pain experienced by people with post-herpetic neuralgia. If you have post-herpetic neuralgia, maintaining good levels of vitamin C in your diet could possibly help you with your pain. Vitamin C is found in fruit and vegetables such as strawberries, oranges, kiwi, broccoli, and red peppers.
For dietary advice specific to your needs we recommend you consult your GP, pain specialist or a qualified dietitian. For more information visit bda.uk.com/publications/index.html.
Dr Rae Frances Bell is Head of Multidisciplinary Clinic, Haukland University Hospital, Bergen, Norway.
Please note: This leaflet is the process of being updated. The revised version will be uploaded in due course.
Most of us will have painful feet from time to time, but it’s usually possible to take care of minor foot problems by making simple changes. Podiatrist and University Lecturer Gordon Hendry gives guidance on looking after your feet and explains when and how to get help for foot pain
Why do people get foot pain?
All kinds of reasons. Risk factors for foot pain include obesity, certain types of foot posture, getting older and sports injuries. People with diabetes can develop neuropathic pain in their feet, and people with vascular problems can develop cramps. The big one we can all do something about is poor footwear.
What should I look for when buying shoes?
High heels and narrow pointy toes are the obvious shoe design features that are hard on our feet, but there are other things besides worth bearing in mind. Our Shoe Shopping Tips can help you make a foot-friendly choice.
Is it better to rest my feet if I have long term pain?
While it’s tempting to rest sore feet, it’s important to keep active for wider health benefits. The strength, flexibility and coordination of your feet and ankles is like anything else – if you don’t use it, you’re going to lose it!
Getting active not only makes you fitter and stronger, but will help to improve proprioception – your sense of where your joints are positioned and how they’re moving. This joint position sense helps you move more efficiently. Poor proprioception has been linked to osteoarthritis which causes pain and mobility problems.
How can I be active when my feet hurt?
If your feet are sore, activity needs a bit more thought than just running on a treadmill. It’s important not to make rapid changes in activity levels to avoid risking injury. Speak to your GP, physiotherapist or podiatrist if you’re unsure.
Swimming and cycling are good, low impact activities. Wearing flip-flops can make walking to the poolside more comfortable. Shoes with a good, hard sole are best for cycling.
The controlled smooth movements practised in tai chi, Pilates and yoga can help to improve strength, coordination and proprioception.
Gradually building up the distance you can walk can be made easier with a fitness app or a pedometer.
There are simple foot-strengthening exercises you can do at home, some of them even while sitting down! You can find a foot pain exercise programme on the Arthritis Research website.
Simple calf raises and toe raises can improve ankle strength and endurance. Using an exercise band around the leg of a chair and moving the foot in inversion and eversion directions against resistance can also improve strength around the ankle. Toe exercises train the little muscles in the feet which help to keep your toes straight and strong.
When should I seek professional help?
If there’s an obvious issue you think might be causing your feet to hurt (such as walking a long way in ill-fitting shoes), try adjusting that yourself. A lot of foot pain can be, and is, successfully self-managed.
However, you should go to your GP for a referral or go direct to a podiatrist when:
Painful feet have prevented you from doing everyday activities on most days over a two to four-week period
Your foot pain is starting to affect your quality of life, restricting your ability to enjoy leisure activities, to work or to spend time doing things with your family
Everything you’ve tried has either not worked or made it worse.
If any of the above apply to you, it’s better to get help sooner rather than later. That way you’ll reduce the loss of fitness that comes with inactivity and make it less likely that your pain will affect your state of mind or social life.
What can a podiatrist do to help my foot pain?
A podiatrist will usually be able to diagnose the cause of your foot pain and offer a treatment plan. Podiatrists have specialist knowledge with managing pain related to musculoskeletal problems, where abnormal mechanics in the foot lead to tissue damage and pain.
If your foot pain is caused by nerve damage related to diabetes or problems with blood flow, you may be advised to see other healthcare professionals who can help you manage those underlying conditions.
Orthoses and more…
Orthoses are specially-designed insoles that reduce unwanted movement and change the way forces (such as the impact of your foot on the pavement) are distributed. For example, an orthotic for heel pain might be designed to increase the contact the rest of your foot has with the ground to reduce the stresses on your heel specifically.
Podiatrists can also recommend exercise programmes to enhance the stability and strength of your feet and legs and give guidance on general foot care.
Good foot hygiene includes:
washing and drying between your toes
wearing breathable socks (why not ask for a pair of merino or cashmere socks next time you’re stuck for a gift idea?) and thicker socks in winter
avoiding cheap and nasty flip flops
applying sun cream to feet on those rare sunny days
applying moisturiser to dry, hard skin.
Dr Gordon Hendry is Lecturer in Musculoskeletal Rehabilitation at Glasgow Caledonian University.
If you would like to know more about the sources of evidence consulted for this publication, please click here.
It is unfortunately not uncommon for people in pain to be told by others (family, colleagues or healthcare professionals) that their pain must be ‘all in the mind’. Amanda C de C Williams gives some tips on how you can respond
There is a way of thinking that says that if something cannot be explained medically or identified by medical tests then it must be ‘psychological’. The idea is either that the person ‘believes’ that they have pain, but doesn’t really, or that whatever pain they have arises entirely from mental processes and is not ‘real’. It is different from acknowledging that pain and emotional distress or psychological disorders may be related.
The fact that current medical knowledge cannot explain something does not mean that a mechanism for the pain will not eventually be discovered leading to effective treatments.
If you have been told that your pain is all in the mind, here are four assertive responses you could use:
‘Pain is a mind-body problem. The two can’t be separated.’
‘I’m distressed because of my pain and the problems it causes. Pain causes distress, not the other way round.’
‘I realise it is good news that the investigations [X-ray, scan, blood tests] show nothing serious. But I feel pain because that’s what my nervous system tells my brain and no investigation can show that.’ After all, plenty of acute pains accepted as ‘real’ wouldn’t show up on investigations like that, from headache to muscle cramp to renal colic.
‘If you had pain like this, and it affected your life like it affects mine, don’t you think you would be worried/distressed/depressed/frustrated?’
Amanda C de C Williams is a Reader in Clinical Health Psychology at University College London, and Consultant Clinical Psychologist at the Pain Management Centre of the National Hospital for Neurology & Neurosurgery, London.
Persistent pain can impact on mood and on many areas of life such as work, exercise and socialising. This leaflet is designed to give advice to people who have found it more difficult or have had to give up sexual activity because of pain
It is often a difficult topic for people to communicate about and health care professionals may not always feel skilled and confident in addressing sexual difficulties. Those not in a relationship may lose confidence and assume that a romantic relationship is now out of the question. Existing relationships can suffer, particularly if maintaining intimacy is challenging. Studies show that individuals with chronic pain are more likely to experience difficulties with sex than those without pain, and to be anxious about sexual activity.
Myths about sex
Lots of ‘ideals’ or myths about sexual activity are constantly promoted by the media (newspapers, magazines, TV, films etc.). It is really difficult not to take these ideals on board and you may hold them as a standard which your sex lives should live up to. Sometimes having these ideas in your head can make maintaining an active sex life alongside chronic pain even more challenging than it would be anyway. Some commonly held myths are:
Sex should be spontaneous – you should never have to plan it or talk about what you like.
Sex should be adventurous and different every time.
Sex is only for young, beautiful and able people.
Everyone else is having sex frequently – at least three times a week.
If a partner isn’t sexually satisfied, they will look elsewhere for sex and intimacy.
It is easy to see how these ideas add to the pressure which you all feel, to have a ‘perfect’ sex life. If you are finding sex painful, then these myths of how sex ‘should’ be can lead you to feel that it is not even worth trying, as you are so far from this ‘ideal’.
Bad experiences with pain
Over time, unpleasant sensations before or during sex, or a flare-up of pain afterwards, may mean that, as with any other activity, you reduce how often you do it, or avoid it altogether. If you continue to be sexually active, this may be because of worry about your partner missing out, rather than because you are enjoying it. The social myths about sex mean that you may not talk to anyone else about this lack of sex, including your partner, and this can feel very isolating. Despite the fact that not all couples are sexually active and that these difficulties are very common in pain, you may feel that you are the only person who is struggling with this. Keeping quiet about it may mean that you don’t realise that in fact your experiences are very normal.
Building up gradually
When sex becomes painful, you tend to avoid it when you can, only approaching it when you feel that you ‘should’ or when your partner wants to be intimate. This leads to an ‘all-or-nothing’ pattern of sexual activity, for example having no sexual contact for a couple of months and then having penetrative sex followed by a severe flare-up of pain. This ‘all or nothing’ pattern doesn’t usually work well for someone with persistent pain. A more helpful approach is to have regular sexual contact, which doesn’t necessarily involve penetrative sex. As well as helping your body to get used to sexual activity in a way which does not trigger a flare-up, it reduces your anxiety and helps you to stay intimate with your partner rather than avoiding any physical contact. There is a well-established graded approach to building up sexual contact known as ‘Sensate Focus’ which works well in reducing your anxiety as well as minimising the risk of flare-ups. This ‘step-by-step’ approach involves taking your sexual relationship back to a level where you feel your pain is manageable, staying at this step for a while (for example, a few weeks), and then moving up to the next level.
Desensitisation
Many persistent pain conditions have elements of ‘hypersensitivity’. That means that sensations which should normally be pleasant and normal, such as touch and stretch, can feel painful. We now have studies explaining that this can be because of changes in your nervous system and not necessarily because you are causing any harm. The good news is that the nervous system is capable of changing the response and the technique used is called ‘desensitisation’. For this technique to be effective, it is important to feel reassured that some temporary increases in pain do not mean that it is harmful. It is possible for a lot of people to gradually build up their tolerance by exploring self-touch regularly. The desensitisation process can be compared to going to a pebbled beach and being in pain the first time you run across the beach but gradually, as you do it more frequently, the soles of your feet get used to it – they ‘desensitise’. Once confidence grows in self-touch, a partner can be involved as long as there is clear communication about what, how long and where touch, stretch and intimacy can be tolerated. For this purpose, Sensate Focus techniques can be useful as a step-by-step approach to introducing intimacy without the pressure of achieving full penetrative intercourse.
Medication side-effects
Medications for pain are sometimes associated with unwanted side effects that can affect sexual desire and performance. You can discuss this with your GP or pain specialist if this is a concern. Sometimes people use medication to manage temporary increases in their usual persistent pain, often known as ‘breakthrough’ medication. It can be useful to take breakthrough medication prior to sexual activity if a flare-up of pain is likely afterwards, though you must take it as prescribed. Developing non-medical strategies for these flare-ups can be very helpful.
Communication
As with any activity involving someone else, you need to communicate to get what works best for you both. This can feel difficult whether you are in an established relationship or with a new partner. It can feel particularly difficult if you ‘buy into’ the myth that sex should always be spontaneous and so never needs to be discussed. To help with communicating about sex, you may want to rehearse what you are going to say, and in the case of a new partner, when you are going to say it. Emphasising how much you want to be close to them, and that you want to avoid your pain getting in the way, will reassure your partner that you are not using your pain as an ‘excuse’ to avoid sex. If it feels difficult to talk, you could consider showing your partner this leaflet to read, as a starting point for a conversation. It is difficult to communicate about what you would like without knowing it yourself, so you may want to start the desensitisation or sensate focus steps described above on your own, so that you know what you can do without triggering a severe flare-up of pain. You can then involve your partner at a later stage.
Prioritising sex
Like any activity which you want to do regularly, you need to prioritise sexual activity so that it becomes a normal and an enjoyable part of your life. It is very easy for it to get ‘lost’ in all the other pressures of day-to-day life, whether you have persistent pain or not. You also need to prioritise the elements of your romantic relationship which will help you to stay close, such as being affectionate and spending time together. Sometimes these elements can suffer when sex is difficult, as there is a worry that any physical affection will lead to sex, which will be painful. Communicating about this so that you can continue to be affectionate often makes a big difference to how close you feel to a partner.
Before sex
Remember that pain can be ‘wound up’ by several factors including activity, mood, environment and biological changes. Some of these factors may be possible to change and some not. Self-management approaches can be helpful here. There may be strategies you can use to manage the pain prior to intimacy, particularly those that help you feel relaxed. You may wish to involve your partner in these strategies such as having a bath or shower together, having a massage or listening to relaxing music.
Managing flare-ups
Flare-ups of pain are a normal part of living with persistent pain, and if they happen after sex it is best to have a plan for how to manage them, as this reduces your anxiety about them. Ideally you also communicate this to your partner so that they understand what you are doing. A flare-up plan for pain may involve, for example, having a hot bath, taking pain medication, using an ice pack, doing some stretches, and reminding yourself that the flare-up will pass.
Self-help resources:
Relate: relate.org.uk – for online resources and couples counselling, including counselling around sexual relationship difficulties
Overcoming Sexual Problems – Vicki Ford, 2010 – self-help book on cognitive-behavioural therapy for sexual difficulties (not just pain-related), including details on the sensate focus approach.
Sarah Edwards (Clinical Psychologist), Katrine Petersen (Physiotherapist in Pain Management), Katie Herron (Clinical Psychologist) are part of the multidisciplinary team at the Pain Management Centre at University College London Hospital.
They deliver self-management support to people with abdomino-pelvic pain (APP) via group programmes and individual sessions. Their work frequently involves supporting people with persistent pain with improving sexual activity and managing relationships, using approaches drawn from established pain management research and sex therapies. Following several years of experience, the authors have presented and published their clinical work internationally to encourage clinicians to facilitate open discussions and offer therapeutic interventions on sexual activity in the context of persistent pain to their patients.
If you would like to know more about the sources of evidence consulted for this publication please click here.
People living with long-term pain may be offered treatment with a TENS machine to help ease their symptoms, but what is it? How does it work? And what can it bring to your pain management toolkit? Physiotherapist Dr Pete Gladwell draws upon his clinical experience and research to answer these questions and explain the effects and benefits of TENS
How does TENS work?
TENS stands for transcutaneous electrical nerve stimulation. TENS devices have been around since the 1960s and help in pain management by delivering electrical impulses across the skin.
TENS machines are usually a small box with wires leading to self-adhesive pads, although wearable belts suitable for back pain are also available. The pads are placed on either side of, on top of or close to the painful area. When switched on you get a tingling sensation under the pads. My usual advice is to aim for a strong, but comfortable, sensation. The right sensation for you can be found using the controls on the TENS machine.
The TENS machine works through different mechanisms. Some research shows that the TENS machine operates through the pain-gate, a special system that helps to block pain messages going up through the spinal cord. Other evidence suggest that the TENS machine also stimulates some of the opioid systems, or natural pain-killing systems, within the body. The third mechanism, which my research suggests as well, is the distraction mechanism; it may actually just take your mind off the pain.
Can TENS be useful to everyone?
For some people, using a TENS machine leads to pain relief. For others, the sensation just takes their mind off the pain for a while.
Unfortunately, for some people it is not helpful or they find the sensation too unpleasant. In our clinics we encourage people to change the sensation to suit them, but it may not work as people’s experience of pain is diverse.
People should NOT use TENS if they have epilepsy, a heart rhythm disorder, a pacemaker fitted or if they are pregnant (except for pain relief during labour). If you are unsure, speak to your healthcare professional.
As far as we can tell, the TENS machine can be used for all pain conditions, providing there is no health reason preventing its use. However, it can be difficult if you have many pain sites especially if the pain can move and vary throughout the day, so you end up chasing after the pain with the TENS machine.
People with widespread pain such as fibromyalgia syndrome may feel that it is difficult to choose a specific area to treat, but it may be possible to select one treatment area such as the lower back, to see if the TENS machine can offer an overall benefit. There is a randomized controlled trial exploring exactly this approach which is due to report its findings soon. However, people with widespread pain often have a localised pain problem which can be helped through using a TENS machine, even if it doesn’t help their more widespread pain. It is down to each individual to try out different approaches to see what may help them.
Different Strategies
We asked people who had experience of using TENS about the ways that they used their TENS machine, the benefits they got and how they overcame their problems. From this research, there seemed to be five main strategies that people had worked out to gain the most from their TENS machine:
Use the TENS machine only on a bad day or during a flare-up to help cope and get through the pain
Use TENS intermittently during the day during a rest break, perhaps in combination with relaxation techniques
Use TENS for particular activities (such as walking or sitting, e.g. in the cinema) which would otherwise have been difficult because of pain
Use TENS on and off all day to help with most daily activities
Use TENS in the morning, to help with the extra pain and stiffness that some people experience first thing.
These different methods show how a range of people can find using a TENS machine beneficial by using different strategies.
When it comes to the benefits, some people talk about direct pain relief. However, some people also find the distraction from their pain really quite helpful. This is known as counter-stimulation, where a more pleasant sensation helps you to manage your pain. These people asserted that the distraction was a separate benefit from pain relief, as it can just provide a break. Some people said that using TENS could help them to do more despite not necessarily reducing the amount of pain. Others found that TENS use could help them to fall asleep more easily. These aspects are currently the focus of research on the benefits of TENS machines.
Hints and Tips
One strategy some people find helpful is to use the machine when at rest in a comfortable position, perhaps while you are having a break or before sleep. Another strategy is to use TENS during particular activities that would otherwise be difficult to manage
The preferred type of sensation is personal. There are some people who feel that the stronger the sensation, the more effective the TENS machine will be. The settings on most machines can be adjusted to suit individual preferences and can be tweaked during a treatment session
Despite being hypoallergenic, the pads can aggravate the skin. Rubber pads with gel are an alternative that can be less of an irritant. However, some people do continue to react to the pads. In this case it is important to limit use to short periods where pain relief is crucial and also to change the position of the pads regularly to avoid the problem
Be persistent! Sometimes patients have to plug away at a problem for two or three months before they feel sure that they are getting the benefits. Changing the settings and changing tack can help you work out whether TENS can work for you.
More information
An information sheet can be found on the North Bristol NHS Trust Pain Clinic website here
In this edition of Airing Pain, Paul Evans investigates the ideas behind Pain Management Programmes, and highlights the importance of the patient in shaping their own treatment.
Internationally recognised Professor Srinivasa Raja speaks to Paul about the differences between nociceptive and neuropathic pain, as well as the complexities of chronic pain and its management.
Consultant Clinical Psychologist, Dr Clare Daniel examines the psychological and social components of chronic pain. She discusses the important role of the cognitive behavioural model in Pain Management Programmes.
Paul speaks to lead physiotherapist Diarmuid Denneny about the importance of the patient in determining the appropriate response to their pain, by taking into account their life and personal aspirations.
Finally, Cameron Rashide, a patient with neuropathic pain among other conditions, speaks of the pain management technique ‘pacing’ and how she has learnt to manage her pain through pushing herself ever so slightly outside her comfort zone.
Issues covered in this programme include: After a stroke, post-herpetic neuralgia, shingles, post-surgical pain, brain signals, emotions, exercise, loss of sensation, mindfulness, nervous system, neuropathic pain, nociceptive pain, numbness, pacing, psychology, tissue injury and trigeminal neuralgia.
Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain, and for healthcare professionals. I’m Paul Evans.
Clare Daniel: A good pain management programme is about responding to what the people bring. So when I was really interested in setting up a programme for people with neuropathic pain, people said to me, ‘Why are you doing this on diagnosis?’
Diarmuid Denneny: It’s well known that people with neuropathic pain wouldn’t tend to do as well on our general pain management programmes. Their outcomes from all the different measures weren’t as good, or as expected.
Daniels: I wanted to do it because of the differences I observed tailoring our intervention to what they were coming with.
Evans: Neuropathic pain is caused by nerve damage or nerve disease. It’s often described by those who have it as burning, aching, or like an electric shock. Many experience pins and needles, numbness and weakness. For some, it’s a stabbing pain in the middle of the night. For others, it’s a burning feeling felt throughout the day. Amongst other causes, it can be caused by shingles, diabetes, surgery or a stroke.
In May of this year, that’s 2019, the International Association for the Study of Pain brought together the world’s leading experts on neuropathic pain in London to share experience and knowledge. One of those is Professor Srinivasa Raja of Johns Hopkins School of Medicine in Baltimore in the United States. He’s internationally recognised for his research into neuropathic pain.
Srinivasa Raja: The International Association for the Study of Pain defines it as pain that results from a disease or injury that affects the somatosensory system. And that big term ‘somatosensory’ actually just means anywhere in the pain signalling process, from the periphery, which could be at the level of the skin, to the brain. The injury or the disease can affect anywhere in that process. Some good examples would be pain that persists after shingles, or herpes zoster, what we call a post-herpetic neuralgia; or a condition after a spinal cord injury; or after a stroke. So here we see that, like in herpes zoster, it’s initially a skin legion that affects the peripheral nervous system. In spinal cord injury it’s the spinal cord, but in stroke it’s the brain. So all of these, or injuries anywhere along this nervous system can lead to neuropathic pain.
Evans: The other term I’ve heard is nociceptive pain, how does it differ from that?
Raja: Nociceptive pain is that pain that could result from an actual or potential injury to tissues. Could be as simple as a pinprick, it could be a burn, or after a surgery, the immediate pain after surgery. So this is usually associated with a tissue injury mechanism.
In contrast, neuropathic pain specifically involves an injury to the nervous system. So, the main difference is what initiates and what causes the pain. But the patients also describe the pain differently, often. The neuropathic pain, there could be an area where the patient says, ‘I’m numb’, but immediately adjacent to it, even touching that area causes pain. So, this kind of challenging situation, where there is loss of sensation as well as amplified, or increased, sensation that coexists is typical for neuropathic pain.
Evans: So if I bang my finger, hurt my finger, that hurts, that sends messages up to my brain that he’s just banged his finger and the brain will translate that into pain. But that pain will go. It will heal. [Yes]. Neuropathic pain stays?
Raja: Not all neuropathic pain stays chronic. There may be some situations which we now call acute neuropathic pain, where the pain may gradually disappear with time. A good example of that may be the phantom pain that usually occurs after an amputation. Most patients, immediately after the surgery, or after the injury, will experience that sensation of pain in the missing part of the limb. However, the majority of those patients seem to resolve in time, it’s only a smaller subset of those patients who persist, and go on to chronic pain.
So the good thing about it is it seems that the body has some protective functions, and in most cases, fortunately for us, the pain resolves with time. It could be weeks to months. But in some cases these pain states persist, and it is this chronic pain state that becomes problematic to most patients.
Evans: So how do you deal with that?
Raja: One of the first aspects of dealing with patients with chronic pain is an appropriate assessment of their problem. An assessment includes not only the description of the pain experience, how they perceive it, but also functionally how this pain affects their quality of life, their day-to-day functioning. In most cases also examining the psychosocial comorbidities, one of the most interesting things is that the pain experience is different from individual to individual given the same injury, and therefore one has to assess what are the other environmental psychosocial factors that may also contribute to this chronic pain experience.
Evans: They call that the biopsychosocial model for pain, where everything around us, our bodies, our society, things that happen in the street and at home, everything feeds in to the pain.
Raja: A few decades back, neuroscientists, people trying to understand the pain mechanisms, thought that this was purely a biological mechanism. That there was injury to tissues, there were certain nerves that were excited, which resulted in the sensation of pain. What we have learned over the last several decades is that it’s much more complex, and that the experience of pain is modified, or modulated, as we call it, by a number of factors. It could be genes, it could be psychological environment, social environment, their prior experiences, and so it’s much more complex that a sensation or just trafficking or signals that go along pain pathways.
Evans: That’s Professor Srinivasa Raja of Johns Hopkins School of Medicine in the United States. We’ll be talking in greater detail about his, and others’, research about neuropathic pain in a future edition of Airing Pain. But in this edition I want to concentrate on those psychological and social components of chronic pain.
Doctor Clare Daniel is a Consultant Clinical Psychologist. Now leading psychological services at Buckinghamshire Healthcare NHS Trust, she previously worked at the National Hospital for Neurology and Neurosurgery Pain Management Centre in London.
Daniel: Psychologists tend to work with the cognitive behavioural model on different variations, and actually, the physiotherapists do as well, if they’re working in pain services. So the cognitive behavioural model, if you just picture a cross, on the four ends of the cross there are four words. One is thoughts, one is emotions, one is behaviour and the other is body. Ok, so thoughts, emotions, behaviour and body, and the idea is that they are all influencing each other. If a person’s fearful, their emotion is fear and they have chronic pain, the chances are that fear is going to turn up the volume, or the intensity of that pain. So that person needs to have input from a body practitioner, which might be a physiotherapist, but obviously thinking psychologically, but also a psychologist. Because you need to address the thoughts and the emotions, which is the psychology part of it, and the behaviour and the body, which is the physio part of it. But in an integrated way, because if you go to a non-pain service you’ll often get the psychologist that will just focus on thoughts and emotions and the physios that just focus on body and behaviour.
Evans: So it’s thoughts, emotion, behaviour and body.
Daniel: It’s just getting people to think about the likelihood of the influence, because actually, one cognitive behavioural model, which is acceptance and commitment therapy, is really trying to separate thoughts and emotions from behaviour. So regardless of what you’re feeling in terms of emotions about your pain, so ‘I’m really frightened about my pain, I can’t do something’, the intervention is to try and keep going with the behaviour, because it fits in with your values.
It’s about thinking about the interaction between the four, and in some respects can you just loosen that interaction. A classic example with neuropathic pain is even if people just experience the sudden electric shock type pain, trigeminal neuralgia (TN) is a classic example, they can be pain free for a long time, but their pain is still massively impacting on them during pain free times. A lot of the time it’s because of the thought, ‘well if I go outside, and if I get a sudden shock of TN, I might be stranded, no-one’s going to help me, I can’t get home, I might not have my tablets’. So it’s that fear and that prediction that make them stay, understandably, at home.
Evans: I would think that’s a perfectly natural way to think. ‘I won’t go out today, what happens if I have a flare up away from home?’
Daniel: I always say when I work with people, is that their responses to their pain are totally natural and understandable. Because acute pain is a warning sign; it’s signalling danger. Chronic pain, it’s not, but that’s how our bodies and brains are wired, to see pain as a danger. So therefore of course we’re going to want to protect ourselves, and not put ourselves in danger.
But we have to change that link or belief with chronic pain, that it’s pain but it’s not dangerous. And we can help you to build up your confidence, to manage the pain if you go outside today.
Evans: Clare Daniel.
Diarmuid Denneny is Physiotherapy Lead at the National Hospital for Neurology and Neurosurgery Pain Management Centre in London.
Denneny: The main role of physiotherapy in pain management, whether it’s neuropathic or another type of chronic pain, is around helping people to understand the pain, why the pain lasts, why it hasn’t gone away. And there are often key messages that we would weave into that part of our work, which are around, it’s possible to experience pain even though the body is no longer experiencing damage, or being damaged. And that the amount of pain that we feel doesn’t necessarily equal the amount of injury that our body has, if it was injured, sustained.
So around the understanding of the pain, and in order to do that we need to understand the person and their life, and what’s important to them, and what the pain is stopping them from doing. So that we can start to work out, and I should say we work very closely with psychologists in pain, so we try to work out what’s important to the person who is experiencing the pain, that they are no longer able to do, or that they find difficult to do. And to work out ways to do that, and that’s when we start to think about the physical activity, or the ability to do things. And there’s a reality that most people, by the time they get to meet with a physiotherapist who specialises in pain, will have encountered many physios before that – an average of four or five is a figure I’ve often heard. And so they understandably come somewhat wary or reticent – this idea [of] ‘not another physiotherapist’. Often they’ll have tried to do things with physio and they may have experienced their pain increasing or getting worse, not getting rid of the pain. So the work we do might be to help people to understand that although they’re here because of pain, we might shift our focus more to what they want to be able to do, and look at ways to do that. Which may include looking at movement, and how to move in a way that allows them to build up their activity levels. And activity levels doesn’t necessarily mean going to a gym or doing a prescription of exercises, it can be being able to hang up the washing at home, or to play with their grandkids, or to do their work, which might include an element of physical activity, standing all day, or whatever it is. So we try to explore a bit about activity and exercises, not just going to a gym, but looking at things that fit into their lives.
Evans: I guess something as simple as getting out of bed is an activity?
Denneny: Absolutely, because the centre here is a specialised pain service, so we’ll often see people who’ve been to other pain services first. And their activity levels can be really, really, really affected by pain. Many people will say they have to spend all day in bed with pain, so a starting point might be thinking about sitting up in bed.
Evans: That was physiotherapist Diarmuid Denneny.
Cameron Rashide: It’s been eight years since I’ve stopped working. In the last eight years I literally stayed at home because the pain is too much for me. I stopped going out to coffee shops, and wouldn’t go out shopping on my own – everything online. Literally it was: hospital, home, hospital, doctor, hospital, home.
Evans: Cameron Rashide is a participant on the COPE pain management programme at the pain management centre in London. COPE is group based and focuses on self-management, building upon skills to help people reduce the impact that pain has on their lives.
Rashide: It’s basically living, breathing with your chronic pain. Even though you’re in pain, don’t think that the pain takes you, you take the pain. You have to decide what you can do with it.
Evans: How do you do that?
Rashide: So basically, on this we’ve learnt different skills, we’ve learned to pace ourselves, we’ve learned to cope with feelings and structures. So you have the thought, the feelings and the behaviour. The thought always will be – ‘I can’t do this, I don’t think I can do this’. The feelings will be – ‘ok I want to do this, but can I do this?’. So then the behaviour is actually putting them two in action, and adding the ‘and’ into it, and saying ‘I think I can do this, but if I try this and I try this, I can get to…’ In other words, instead of saying A-to-B, you can’t get there on its own, you need the ‘C’ there, so it’s trying to put them all together.
Learning the skill of just pushing yourself just a little bit, but not too much. Pacing. The golden word, pacing.
Evans: That’s the theory. How are you putting it into practice? And how’s it affecting you?
Rashide: There’s other skills, they’ve asked us to go outside the box that you normally would do since you’ve been in pain. Now this has taught us to practically do something outside the box, like last week my weekly goal was to go to a coffee bar, and I did that. Even though I wasn’t comfortable, I was in pain, but it was enough to pace myself, but not overdo it. So it’s little goals, but achievable goals.
Evans: Well, amongst other conditions, like fibromyalgia, Cameron has neuropathic pain. But there’s a growing body of evidence that people with neuropathic pain don’t do as well on general pain management programmes as those who have other chronic pain conditions. Clare Daniel.
Daniel: I was quite new to pain services and I hadn’t quite realised the difference between neuropathic pain and non-neuropathic pain. And I noted this group of patients, they didn’t quite do as well in the programmes. Some people left the programmes, dropped out, because they just felt as though what we were saying didn’t fit with their experiences. So, ‘I’m different from everybody else in the programme’. And then I began to realise that ‘Well, these are often people with neuropathic pain’. So I looked at the differences between a group of people with non-neuropathic pain and people with neuropathic pain, and actually the main difference is the pacing can help, but doesn’t necessarily help them. Please don’t think I’m saying ‘Don’t pace at all’ because it can be very helpful, but some people don’t feel as though it’s helpful, or it’s unpredictably helpful. And the other thing is the sudden pain that just suddenly comes on. So my gut instinct at that point was that if they can begin to respond differently to their sudden pain, as opposed to what often happens of sometimes literally falling to the floor, or curling up in a ball, if they could stay in the present, remain mindful, learn strategies just to keep them present. Not become very fearful about ‘My pains suddenly there, what’s going to happen?’. Begin to respond, I guess much more gently on themselves, and differently.
Denneny: Asking people with neuropathic pain what would be helpful, and they did express wanting to understand more about the nuts and bolts of the nervous system and how that might be contributing to their pain. So I suppose broadly we agree that it would be helpful to go into more detail on that aspect of the body as part of the programme. So if we call it psychoeducation, we thought that would be useful to include in the programme. Mindfulness uses a certain type of language – if you think about neuroplasticity, which is, broadly speaking, the way that the nervous system is constantly adapting to its environment, and the effect of the environment on the nervous system. So it’s always changing all the time, which is to me tremendously hopeful [laughs].
A lot of the factors that are most helpful for the nervous system, in terms of that neuroplasticity, are around novelty, are around being engaged in a community; so going out and about. They’re around repetition; they’re around focus. And if you think about that in the language of mindfulness, it’s saying the same things really, in terms of what you do. So we thought maybe it would be useful to apply some of those strategies within a programme. So that’s what we set up, and we piloted it for the first three or four weeks [cut off] – 20 patients – and we found that their outcomes, whereas previously they were slightly below what we would have expected, they kind of matched, or exceeded the general scores that we would expect.
Daniel: Astounding in a couple of cases, I remember.
Evans: So basically, the difference between a neuropathic pain management programme and a non-neuropathic pain programme is just how to handle the different ways that pain comes?
Denneny: So around these sudden, severe episodes of pain, feedback almost consistently is actually, the most helpful thing in those moments is to bring my awareness to my breathing. Because it’s a reality with these that they are very sudden, severe, quick, and then they go away almost as quickly as they’ve come. And by the time you’ve got to your medication or other things that might be helpful, it’s settled back down again. So in terms of responsiveness, we’re always carrying our breathing with us all the time, so it’s something that we have access to and we can drop into.
It doesn’t work for everybody, it’s important to point that out, it’s not a panacea or something that is going to work for everybody, but for those who’ve come on the programme, that’s the one thing that they tend to really value and find helpful. So there’s something about strategies and the symptoms that people experience, and then there’s something about the information that we give on it is perhaps more information than you might think is helpful on a general programme. We always give people resources and they’re free to read as much or as little as they want to, or to explore as much or as little as they want to, but we’ve found people with neuropathic pain, they tended to want to know more about what’s going on in the nervous system, how does it change, why does it change, and how does it explain these symptoms.
Daniel: A good pain management programme is about responding to what the people bring. So when I was really interested in setting up a programme for people with neuropathic pain a lot of people said to me, ‘Why are you doing this on diagnosis?’. Of course, I was, because I was separating neuropathic pain from non-neuropathic pain, but that’s not the reason why I was doing it. I wanted to do it because of the differences I observed, so what people were coming with. They could have been diagnosed with anything, but it didn’t really matter to me, it was about tailoring our intervention to what they were coming with.
Evans: This is a very broad question, but what would you consider to be a successful treatment?
Denneny: It’s really down to the person with pain to decide that. In the days of Alastair Campbell I used to think we were trying to help spin things a little bit, by saying ‘Ok you’re here because of pain but we want to focus on what’s important to you’. And in a sense that is what we’re doing, so success would look like somebody achieving the goals that they’d set themselves during their time with us. And maybe not even during their time with us, but having on their last session a very clear ‘I’m not there yet but I know what I have to do, and this is my plan to get there’.
Evans: Establishing what goals a person sets for himself or herself – that can be a very difficult thing because somebody coming to a specialist unit like this might think, well, ‘My goal is to climb Everest’, ‘My goal is to do the London marathon’. How do you sort out expectations?
Daniel: When I first starting working in pain, which was a long time ago, we just focussed on goals and people did find that very difficult, particularly people from different cultures with English as a second language, a goal might mean something very different. More in the last seven to ten years we’ve talked much more about values. And values are some things that are really important to us, and it might be developing, learning, health – they tend to be one word. So it’s about something that we’re continuously aiming towards in our life. We never actually quite reach them, we’re just continuously going towards those.
And then goals are shorter steps in the pursuit of those values, in line with those values. In terms of realistic goals, we talk about short term and long term goals, because as Diarmuid said, when people finish the programme it’s not finished, they will continue, hopefully, to improve in terms of quality of life, reducing the impact of pain. So we’re very clear about short term steps. We do talk a lot about the fact that that might be frustrating to people because they want to get up and run, run before they can walk, literally sometimes. And we do talk very much about realistic expectations. When we talk about goals we talk about SMART goals, the acronym SMART.
Evans: SMART is?
Daniel: So, S stands for specific, so a very specific goal – so not just, ‘I want to swim’. It might be ‘I want to swim two lengths three times a week’. It doesn’t matter. It’s absolutely set by the person with pain. It’s not set by us. So – specific. Measurable, so that you know when you’ve achieved it: so the number of lengths that you want to, for example, swim. Achievable – think about this, is it really achievable with what you’ve set in the timeframe that you’ve set it, ‘Can I swim two lengths by, let’s say six weeks’ time?’. And then the R could be, people often say realistic, personally I think that’s quite similar to achievable. I think relevant’s quite a good one, so ‘Is it relevant to me? Does it fit with my values? Does it fit with what I want to achieve in life? Is it relevant to me?’. And then the T is timeframe or time bound, so ‘When do I aim to achieve this goal by?’. But we’ve also started to talk about that having to be flexible, so we often put an F on the end of SMART [laugh], because people do have high expectations of themselves, they can get very frustrated, life can throw things at them and the measures, or the timeframe that they’ve set for their goals can go awry. And that’s quite normal, that’s life, so we help them to be flexible and think, ‘Well, ok, if you need to push that back a bit, that’s fine’. But what we don’t want is for them to keep pushing back and back and back and never achieve.
Denneny: With pain there’s this idea that doing something that you want to do, that’s important to do, often that you have to do, just because real life means we have to do things, afterwards experiencing an increase in pain. Some people call that boom bust cycle, some people talk about activity cycling, where they do more and then have a period of not being able to do as much. We talk a lot here about flare ups or pain flares. This is terminology, different people have their own preference for what they want to call that. And I suppose for us, working with people with pain, the important thing is to acknowledge that they’re [flare ups/pain flares] a normal part of living with long term pain. They will happen. They don’t mean that things are necessarily getting worse because they are a normal part of the condition over time. And so the challenge is, and what we work a lot on with people, is learning ways to manage, as best they can, so that they get through these flares without having an impact on their ability to manage that sets them back.
Daniel: But also, specifically with neuropathic pain, I think it’s important to help people understand that neuropathic pain, for a lot, not everybody, it can come suddenly. It just suddenly happens with no specific warning. Whereas non-neuropathic pain, not always, but it can just gradually increase and the person knows it’s beginning to increase. So, it’s important that the person recognises that a sudden increase in their neuropathic pain is actually normal. That’s not necessarily related to the boom and bust activity cycling.
Denneny: That is really important, yeah. And again going back to what we do with people, it’s to help try and separate what the pain is doing from what they do day-to-day. Because more than any other group that we work with, people who have neuropathic pain really struggle because often the classic is, ‘Well it doesn’t matter what I do, it’ll either hurt a lot if it’s hurting a lot’, or ‘It doesn’t make any difference’ so much.
So, some of our more, what could be considered traditional strategies for working with people with chronic pain, people who have neuropathic symptoms often struggle, particularly pacing.
Daniel: Yeah, because pacing can be quite, less so nowadays, but it can be quite prescriptive. In the olden days it used to be about people increasing their activity levels, mainly within time. So it might be that you walk for one minute, have a rest, then walk for another minute, and gradually over days, weeks, months, increase that. But some people with neuropathic pain say, ‘Well that doesn’t make sense to me. Regardless of what I do, regardless of how far I walk, even if I’m just sitting down and not walking, my pain will suddenly increase. But sometimes I can walk five minutes and its fine’. So pacing for some people makes less sense, but I think the message therefore has to be a bit more flexible and it’s about, ‘It’s safe to move’. Your pain will increase at times, but then what can you do when it does increase, to help yourself, either mood not suddenly plummet, or giving yourself a hard time.
Denneny: Or stopping doing something because, unfortunately, has it happened at the time you were doing something and you’ve made that link that doing that is what caused it, which isn’t always true.
Evans: That’s physiotherapist Diarmuid Denneny and psychologist Clare Daniel.
For more information about pain services at The National Hospital for Neurology and Neurosurgery Pain Management Centre, including their pain management programmes, put the letters U, C and L, that’s University College London, with the words ‘pain management centre’ into your search engine.
I’ll just remind you as I always do, that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgments available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf.
Now, to end this edition of Airing Pain, what advice would the team give for those who don’t have access to a specific neuropathic pain management programme?
Denneny: There are lots of resources out there in terms of exploring things like mindfulness based pain management approaches they could look at. It’s being flexible with the pacing, or this idea of building up activity, that holding that lightly, if that’s possible. That it’s good to be active just generally for all sorts of other reasons.
Daniel: And safe, it’s safe to be active.
Denneny: It’s safe, yeah, really important.
Daniel: That’s a big important message, ‘I’m not going to do any more damage, I’m not going to do damage’. So a lot of the non-neuropathic principles absolutely apply to neuropathic. And I’d say this to any person with pain, if they’re accessing online resources or self-help materials, about taking what is useful for them.
Evans: And that it’s trusted.
Daniel: Yeah, an evidence based approach is absolutely essential.
Contributors:
Dr Clare Daniel, Consultant Clinical Psychologist, Buckinghamshire Healthcare NHS Trust
Diarmuid Denneny, Physiotherapy Lead at the National Hospital for Neurology and Neurosurgery Pain Management Centre in London
Professor Srinivasa Raja, Johns Hopkins School of Medicine, USA
Cameron Rashide, patient who lives with chronic pain.
Exploring neuropathic pain and the various ways it can be managed
Understanding the differences between neuropathic and non-neuropathic pain, and the varied responses they demand. In this edition of Airing Pain, Paul Evans investigates the ideas behind Pain Management Programmes, and highlights the importance of the patient in shaping their own treatment.
Internationally recognised Professor Srinivasa Raja speaks to Paul about the differences between nociceptive and neuropathic pain, as well as the complexities of chronic pain and its management.
Consultant Clinical Psychologist, Dr Clare Daniel examines the psychological and social components of chronic pain. She discusses the important role of the cognitive behavioural model in Pain Management Programmes.
Paul speaks to lead physiotherapist Diarmuid Denneny about the importance of the patient in determining the appropriate response to their pain, by taking into account their life and personal aspirations.
Finally, Cameron Rashide, a patient with neuropathic pain among other conditions, speaks of the pain management technique ‘pacing’ and how she has learnt to manage her pain through pushing herself ever so slightly outside her comfort zone.
Issues covered in this programme include: After a stroke, post-herpetic neuralgia, shingles, post-surgical pain, brain signals, emotions, exercise, loss of sensation, mindfulness, nervous system, neuropathic pain, nociceptive pain, numbness, pacing, psychology, tissue injury and trigeminal neuralgia.
Contributors:
Dr Clare Daniel, Consultant Clinical Psychologist, Buckinghamshire Healthcare NHS Trust
Diarmuid Denneny, Physiotherapy Lead at the National Hospital for Neurology and Neurosurgery Pain Management Centre in London
Professor Srinivasa Raja, Johns Hopkins School of Medicine, USA
Cameron Rashide, patient who lives with chronic pain.
How does the law affect people who use drugs to manage their pain?
This edition is funded by Foundation Scotland
On 1 April 2019 Pregabalin and Gabapentin, drugs recommended for the management of neuropathic pain, were re-classified as class C controlled substances.
Medicinal Cannabis: Is it safe? Does it work for pain? Is it legal? Where do people who use these drugs to manage their chronic pain now stand within UK law?
Issues covered in this programme include: Cannabinoids, cannabis, epilepsy, seizures, drugs, medication, policy, gabapentin, classification, legality, prescription, neuropathic pain, pregabalin, Schedule One drugs and Schedule Two drugs.
Contributors:
Blair Smith, Consultant in Pain Medicine at NHS Tayside, and National Lead Clinician for Chronic Pain in Scotland
Steve Alexander, Associate Professor in Molecular Pharmacology at Nottingham University
On 1 April 2019, Pregabalin and Gabapentin, drugs recommended for the management of neuropathic pain, were re-classified as class C controlled substances.
Medicinal Cannabis: Is it safe? Does it work for pain? Is it legal? Where do people who use these drugs to manage their chronic pain now stand within UK law?
In this edition of Airing Pain, contributors Blair Smith, Consultant in Pain Medicine at NHS Tayside, and National Lead Clinician for Chronic Pain in Scotland, Steve Alexander, Associate Professor in Molecular Pharmacology at Nottingham University and Cameron Rashide who lives with neuropathic pain.
Issues covered in this programme include: Cannabinoids, cannabis, epilepsy, seizures, drugs, medication, policy, gabapentin, classification, legality, prescription, neuropathic pain, pregabalin, Schedule One drugs and Schedule Two drugs.
Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for healthcare professionals. I’m Paul Evans, this edition of Airing Pain has been funded by Foundation Scotland.
Cameron Rashide: There are people out there that have found out this is a strong drug, and want it. But people like us are struggling every day. From the moment we open our eyes to the moment we try to close them. We’re not taking it for the fun of it. We’re taking it to ease our body. We have to live with this pain that a normal person doesn’t have to live with. So why make it so difficult for us? Why make it harder for us to go and get something that you prescribed? You asked us to take because you said it was good for us. And now you’re saying it’s a prohibited drug.
Evans: On the first of April 2019, pregabalin and gabapentin, drugs recommended by the National Institute for Health and Care Excellence as being effective at reducing neuropathic pain and are safe and cost effective, were reclassified as Class C controlled substances in the UK. The change means it’s illegal to possess pregabalin and gabapentin without a prescription, and it’s illegal to supply or sell them to others. It also means that doctors will now need to physically sign prescriptions rather than electronic copies being accepted by the pharmacists. And pharmacists, for their part must dispense the drug within 28 days of the prescription being written. If calls to the Pain Concern helplines are anything to go by, it’s a change that’s made people who live with neuropathic pain absolutely furious. Cameron Rashide lives with chronic pain.
Rashide: My chronic pain started shortly after I had a car accident. And then in the same week, I fell down quite a lot of stairs. So, it just – it was like double impact on the spine. Straight away I didn’t go to the hospital. So, then it was like slowly started building and got worse. So literally, I’ve been living with it [for] 30 years.
Evans: So how does it affect you?
Rashide: I’ve had to give up work, which I really liked. It literally got to the stage that I used to push through the pain and go to work. I live in East London and I was working in Richmond. So, the travelling took a big impact on me. And then when I had to give it up, that was the line of me realising [that] this is too much.
Evans: A strange question, but how does your pain feel?
Rashide: You know, when you have a can of Coke and you want to smash it? I am the can of Coke and you’re smashing me. That is literally an everyday thing from top to toe.
Evans: So, you’re being crushed, basically.
Rashide: Totally, every day. And not even giving me a breather in between.
Evans: So, is this neuropathic pain?
Rashide: First, I was told it was just the disc. And then it’s turned into neuropathic pain. So, they realised I had that shortly after I had the stroke.
Evans: So, you’ve had a stroke as well. Can I ask you about your medication?
Rashide: I’ve been taking pregabalin for over three years now.
Evans: How does that help?
Rashide: I take it in the evening, and if the pain flares up during the day time. It doesn’t delete, but it eases the pain to the point that you can relax and try to sleep. You won’t have a full night’s sleep but you’ll have some sort of sleep.
Evans: Now they’ve just changed the classification of pregabalin and gabapentin, how does that make you feel?
Rashide: I’m on other prohibited drugs. So, it’s like, ‘Okay, am I taking too much?’ This is also one thing that we learned in the group about your medication, the level of medication that we’ve been given. Are they going to help you? Or is it going to stop your pain? I think with it going into prohibited, you’re actually making people think, ‘Okay, if it’s going to help them, it’s going to help them.’ But I’ve started to think, ‘Am I taking too many drugs, that are going to mess me up later on in life?’ Because, obviously, depending on your [tolerance], and so on, what’s going to happen? Because sometimes, obviously, the doctors need to change your doses. You can up them [or] down them, so some people start relying on drugs. I’m one of these [people that believes] in alternative therapy, but I realised as well that you need to take medication when you have to take it but having it now classified – I wasn’t really happy [about] that. It actually made me feel [that] I’m taking something that is a high-level drug, because you can’t, now, have a repeat done. You can’t ask the chemist to drop it off no more. You personally have to go to the surgery. You have to ask the doctor for it. And then you have to give it to the chemist to fulfil.
Evans: It’s almost as if they don’t trust you.
Rashide: Yeah. There was one time like, my GP did get annoyed and said, ‘Look, she can’t walk, she can’t come surgery to get it. Why can’t you just repeat it?’ And it’s like, okay, it’s a prohibited drug. First of all, why are you giving out then if it’s so strong? Why are you giving it on prescription, why are you giving it to anybody? If you have given it out, why are you still giving it out if you think it’s prohibited? Why didn’t you stop it before you made it prohibited?
Evans: So, let me get this straight in my own head. You have to visit your GP once a month. Now you get a month supply.
Rashide: Yeah.
Evans: And he or she has to say: ‘Yes, she’s good for another month’.
Rashide: Yeah.
Evans: And you’ve had pain for thirty years.
Rashide: Exactly. So that it annoys you, because you’ve got to go through this every month just to pick up one medication. If you were going to do this, you should either have this register – i.e. like in America, they give you little cards. Why don’t you do that with all the patients that have it already? That have got to have it? Why do they have to go through this continuous – Go to the surgery – The doctor has to check you out? All right, there are people out there that have found out this is a strong drug and want it but people like us are struggling every day. From the moment we open our eyes to the moment we try to close them. We’re not taking it for the fun of it. We’re taking it to ease our body. We have to live with this pain that a normal person doesn’t have to live with. So why make it so difficult for us? Why make it harder for us to go and get something that you prescribed? You asked us to take it, because you said it was good for us. And now you’re saying it’s a prohibited drug.
Evans: Are they saying it’s not good for you?
Rashide: That’s the question. They’ve never said it’s not good for you. But they’ve classified it as prohibited.
Evans: What does your GP say about it?
Rashide: The first week it happened, when they made it prohibited. She did the mistake of giving me a six-months repeat. Okay, so she made six prescriptions up like she would do for my repeats. They were taken to the chemists to cut and the chemist point blank refused to fill them. Then I had to go back to the surgery to pick up another prescription to be filled. So, in other words, I’ve gone through two different hassles. And none of the GPs that I’ve visited have actually commented on the way they’ve had to do it now. They’ve said, ‘The law is the law.’
Evans: It seems strange to me that they’re not criminalising people, but they’re not just burdening you, the person who lives with pain, who needs these drugs, but they’re also putting the GPs into the same box, that they can’t be trusted either.
Rashide: Yeah, it is. Because it’s like, who are they giving it out to? Are they giving it out the right patients? Or are they giving it to these people? I’m not one of these that always say, ‘Oh, the government doesn’t trust us,’ and so on. But it’s starting to look like that now. It’s like the old saying, ‘If something’s working, why change it?’ Doctors are wise enough not to give it to [just] anybody. They’re not going to give it to Tom that’s just broken his thumb. They’re going to give it to Peter that’s been suffering of thirty years or forty years, who has been on it for a reason. They are sensible enough, after all, they did go through medical school. The government didn’t, so why are doing this?
Evans: That’s Cameron Rashide. Blair Smith is a consultant in pain medicine at NHS Tayside. He’s national lead clinician for chronic pain in Scotland. His research interests have been to look at the rates of prescribing of some of the drugs used in the management of chronic pain, including pregabalin and gabapentin.
Blair Smith: The reasons for its introduction are to improve the safety of prescribing at a population level, to minimise the risk of people who are obtaining the drug and taking higher doses than necessary, or people who are perhaps even diverting the drug to the streets, or to minimise the risks of the increase in drug-related deaths that have been associated with gabapentin and pregabalin. So, it’s done for patient safety reasons. It isn’t done to punish people who are obtaining benefit from the drug, taken for the correct indications. It’s important to state, at this stage, that gabapentin and pregabalin are actually very useful drugs for treating particularly neuropathic pain. And anybody who is taking these drugs and deriving benefit from them, for their neuropathic pain, shouldn’t be concerned because they are going to continue to be available. And they are going to be able to get their drugs and the medicines when they need them.
Evans: But the chronic pain patient communities are very disturbed by this, very upset by this. Explain why.
Blair Smith: Well, I think because of the publicity that’s attached to it, and because of the perceived – and in some cases – maybe actual slight increase in difficulty with getting prescriptions, I can understand that people who are obtaining great relief from their very distressing neuropathic pain will be concerned that this is going to be taken away from them. And that was really what I was meaning before: they shouldn’t be concerned about that because they’re going to continue to be available through the same routes as before, normally through their general practitioner.
I think there’s probably also concern that, because of the publicity attached to it and other publicity surrounding the identified increased in prescribing rates, that there’s a perceived stigma attached to it. They perceive that they are being perceived as drug addicts, I suppose.
Evans: It’s almost like criminalising them.
Blair Smith: Yes, well, I can understand why that perception goes ahead. Certainly, there isn’t that perception within the medical community and within the healthcare professional community, for whom anyone who’s obtaining benefit from gabapentin or pregabalin, usually for neuropathic pain should certainly continue to get them without any problem or issue.
Evans: Are they addictive?
Blair Smith: If you read the press, there’s an assumption that they are addictive, but I have yet to read any evidence of their addictiveness, and that’s research that needs to be done. We’ve been discussing that with colleagues in Dundee. It’s not even clear what the effect of them is, other than pain relief. There clearly is some effect to make them valuable currency on the street and in prisons. We think it might be to do with potentially enhancing the effect of opioids taken at the same time. That’s the – that’s the theory. So, if you’re taking an opioid, whether it’s heroin or morphine or Tramadol, whatever, if you’re taking that in order to generate pleasurable sensations, [such as] euphoria, there may be an additive effect of gabapentin [or] pregabalin [can] prolong [the effect] or [reduces] the dose of the opioid that you need to take in order to gain the same euphoric effect. But by themselves, I don’t know of any evidence to say that the gabapentin or pregabalin are addictive. If you’re taking a strong opioid, such as morphine, there’s a thing called tolerance which often develops, which means that the effect that you have at a certain dose reduces in terms of its pain relief, so you have to take a slightly higher dose to get the same effect. And that keeps going so, potentially, you could keep having to increase your dose and then you find yourself in a very high dose and unable to come off it because a dependency has set in. I’ve not seen that with gabapentin or pregabalin, and I’ve not read any evidence of it. Once you reach the dose of pregabalin that is most effective for your pain, then that dose can remain stable, with the same effect, for long term.
Evans: Professor Blair Smith. Well, Pain Concern publishes its own leaflets, written by leading experts, on how to manage your medications for chronic pain, including one specifically on pregabalin and gabapentin. You can download it from Pain Concern’s website which is painconcern.org.uk and from there, you’ll also be able to listen to all 114 additions of Airing Pain, and also find details of our magazine, Pain Matters. Now, another drug that’s creating its own media frenzy over its legal status for medical use, is cannabis. Steve Alexander is Associate Professor in Molecular Pharmacology at Nottingham University.
Steve Alexander: In particular, I’ve been interested in cannabis-related medicines and cannabinoids for about twenty years. And of course, that’s relevant to pain because of the overlap in the use of cannabis in many areas the world, and the hypothesis that endogenous cannabinoids can maybe regulate pain mechanisms.
Evans: Well it’s very apt as well because cannabis and cannabinoids are hot stories in the news at the moment. Now, tell me what is the problem with using cannabis for pain-related [purposes]? If there is a problem?
Alexander: There are several issues. The first one is legality. Clearly, we’re in a situation where only very recently has there been a move to move cannabis-derived medicinal preparations out of schedule one. I should point out that cannabis, itself, is still schedule one in this country. But what has happened in November was the move to schedule two licencing for cannabis-derived medicinal preparations.
Evans: Just explain that schedule one and schedule two. What the difference is and do they govern what the public can do or what the professionals can do?
Alexander: So, scheduling has been around since the ’50s. And different countries have slightly different versions of it. But essentially, as derived by the United Nations, a schedule-one compound would be something that has no medicinal value. So aside from raw cannabis, compounds like LSD, and MDMA, are described as schedule one. Where, at the moment, there’s no perceived clinical benefit. Lower levels of scheduling, describe drugs which should be controlled, where there is a potential for abuse, for example, but where there is medicinal value. And so, the schedule level is meant to reflect the sort of severity of potential damage or diversion or abuse that could be associated with those. It’s kind of a difficult one because we know that illegal cannabis is very widely consumed in this country. But it still remains a scheduled drug.
Evans: I do know people who use illegal cannabis, who smoke cannabis, who swear that it is very good for managing their chronic pain.
Alexander: There is, as you say, an awful lot of accumulation of anecdotal evidence. And it’s a difficult one to, you know, if you come from it from the scientific clinical aspect, you want to see clinical trials where things are done in a rigorous, side-by-side manner where you can point to a clear difference between people who have the active ingredient and people who don’t have the active ingredient and see that it’s a positive. And there have been a lot of those sort of clinical trials conducted in the past. If you look at the sort of meta-analysis, there is a benefit [of cannabis] to be had in pain. It’s not huge. And I think the reason for that, which we can come back to in a second, [is that] I think individuals who see that benefit – you can understand that they’re willing to break the law. For chronic pain sufferers, if their alternative medication, their existing medication, isn’t doing the job, I absolutely empathise with them about [their] need to break the law.
Evans: Empathy is perfectly understandable. But the fact is that cannabis, raw cannabis, street cannabis, has its dangers as well.
Alexander: Absolutely. So, there are two issues I have with illegal drugs. And the first is that they are illegal and the second is there is no quality control. So, you don’t know what you’re getting. Even if you go back to the same individual, you will be getting things which vary quite a lot. And what we also say, you know, it’s not just that there is a change in the sort of content, the high levels of THC that people would describe as ‘skunk’, but there’s also occasional levels of adulteration: people using synthetic cannabinoids and adding them to cannabis, and that can be potentially dangerous as well. So, although it’s not overtly life threatening, doesn’t mean it’s safe. So, THC is, I suppose, the most famous cannabinoid, so the cannabis plant is wonderfully rich in its diversity. It’s got over a hundred – what appear to be – unique metabolites to that plant, and we still don’t understand why. It’s an interesting sort of facet of botany. But the one that is regarded as the major psychoactive entity in terms of giving the high that non-medicinal users want, appears to be THC: tetrahydrocannabinol. So that’s also effective in terms of delivering analgesia but the downside is it produces this dissociation from the environment, hyper-locomotion, so people go into a sort of – not a catatonic state because it’s not quite that, but short-term memory loss, impairment of some of the visual ideas as well. So clearly, if we’re wanting people to be functional, and to have pain relief, then that is far from ideal. And so that has been an issue about the use of cannabis.
One of the things that is kind of interesting is trying to figure out, if you can choose a dose that might be beneficial in terms of providing pain relief, and not being too bad in terms of removing you from your environment, that’s proving a little bit difficult because of the way in which people take cannabis. So, smoking is by far the most common way that people take non-medicinal cannabis. And with that, you can do a little bit of titration, because there’s a relatively short delay between taking a hit and feeling those sensations. But clearly that’s not something you can promote as a mechanism for treating an illness. So, the alternative routes of oral administration are very slow, in terms of onset; these are not very well absorbed compounds. And so, getting the right dose for an individual is actually quite difficult. And that’s one of the sorts of things that I think would really help, would be to have a bit more precision about the delivery of these agents. So that the places in the world where medicinal cannabis is available and where you do have quality control and reproducible levels of particular cannabinoids in those preparations, they often try and personalise it and personalised medicine is great. It’s one of the things that we’re trying to advocate for people in general. It’s really nice to be able to identify that people are different, they respond very differently in the ways in which they handle the drugs and the effects. So, it’s nice to have that personalisation, but it’s a really difficult one to start off with, if you like. So, with an established medicine, to look at how people are different in their responses, and then pick those who are much more likely to respond, is kind of the accepted way of doing it. But starting off with something which we know is quite variable, and then trying to pick people who are going to be better responders and people are not going to respond as well – that’s not as straightforward. So often what goes on in the other countries where medicinal cannabis is legal, is that they start off with low doses. So, it’s the sort of tradition, ‘Start low, go slow,’ and vary the dose and sometimes vary the content, so the THC that we know provides some analgesia – you kind of try and ramp that one up until a time where the patient feels they get the optimum benefit.
Evans: Now you’re talking about cannabinoids and cannabis. What is a cannabinoid?
Alexander: Cannabis is the plant. We’ve had versions of cannabis in the UK for hundreds of years. We’ve used it over many years as a source of fibre. So, in the Elizabethan era, it was grown and, in fact, if you had a particular size of land, you had to grow hemp for the rope and sail that was used in the Royal Navy. But that was very low in the cannabinoids. So, it didn’t have the high levels of the active ingredients that we talk about in terms of the medicinal properties. As with most plants, there is a huge variation depending on the seed that you use in the first place, how you grow it, where you grow it, how you harvest it, how you store it, and all those sorts of things – which parts of the plant to use as well. Cannabinoids were often called secondary metabolites. They’re not actually needed for the basic metabolism of the plant, but they accumulate and they might be something to do with the plant’s own immune system, because there’s a story that maybe it reduces parasitic infection of the plant itself, and so they thrive. So, these accumulate particularly in the female buds, some people have listed maybe 114 of these which seem to be relatively unique to the cannabis plant, and those are the things that have been associated with things like religious practices in India and the Caribbean. And then the sort of abuse, if you like, this street use that we think of primarily when somebody says ‘cannabis’ to you.
Evans: In terms of legality in the UK anyway, you can buy cannabis oil on the high street. So, what is that?
Alexander: So that’s primarily derived from the seed. So, the legality of the situation is that they should not contain above a certain measure of THC. So, the principle is that they’re obtained from versions of the plant which maybe have a low THC content, the derivation of the oil is as much as you would [derive] from any seed, it’s kind of a pressing process, and the oil is extracted. Many of these contain one of the other cannabinoids called cannabidiol. A compound which is very interesting in terms of treating childhood epilepsy. So that particular agent of purified cannabidiol has recently been approved in the United States for treatment of particular versions of infantile, intractable epilepsy. So, [for] kids who just don’t respond to normal medication, and have forty/fifty seizures a week – horrible. And in some of those [cases], not all by any means, but in some of those cannabidiols seems to reduce that to something which is manageable.
Evans: And these are the stories that are making the headlines at this moment.
Alexander: So, as you’re probably aware, last spring and summer, there was quite a major sort of campaign highlighting a couple of incidences in the UK, where kids who have this disorder, were being treated up to a point with versions of cannabinoids, mainly cannabidiol. Which – [it’s] very difficult to know for sure what the content of those things were. But yeah, that became such a high-profile [campaign] that I think that prompted the politicians to look at the situation and ask the scientific clinical community to re-evaluate kind of striving into some preparations and that prompted the change in the law. Because there are so many different metabolites, we’ve really got good information on the two, THC and CBD: tetrahydrocannabinol and cannabidiol. But the others – we’re beginning to identify that they do have bioactivity. Whether that’s useful or not, we don’t know. Some – most of the medicinal cannabis producers focus on those because we’ve got good evidence that they may have useful effects at the right doses. And then, because they’re relatively minor metabolites, the others, they kind of leave them to one side. But we’re beginning to appreciate that they may have beneficial effects as well. I think one of the other things to say is that, quite often, drugs are not given in isolation. And obviously with an elderly population, as people grow older, they accumulate more issues, and so it’s much more common for them to have combinations of medicines. The overlap between how drugs might be metabolised by the body, and the potential interactions that might happen, is clearly an area that needs clarification with co-administration of many medicines.
Evans: Let me clarify this in my own mind. The THC that is not – or [is] at very reduced levels, in the cannabinoid oils and things like that: that’s the substance that gives you a high, in illegal cannabis.
Alexander: So, to the best of our knowledge it’s the primary psychotropic agent, the mood-altering agent in cannabis. Because of its prominence in terms of our understanding of it and the abundance in the plant, it’s the one that we focus on the most. It’s not impossible that some of the others have some minor effects. But we don’t worry so much about them because they don’t accumulate in the same ways as THC.
Evans: Just for people who are totally confused by this cannabis/cannabinoid thing. Should they be nervous of going into a health food shop and buying cannabinoid oil?
Alexander: I think the evidence that we have so far is that there is not a level of consistency about the components – the constituents – that are around. I think for the moment, it’s still not subject to the regulation that would allow a sort of consistency of content.
Evans: That’s Steve Alexander, Associate Professor in Molecular Pharmacology at Nottingham University. Now, this edition of Airing Pain is being recorded in May 2019. Guidelines do change so please do check them. But the current NHS England guidelines for the use of medical cannabis say that many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous. Some products that might claim to be medical cannabis, such as CBD oil or hemp oil, are available to buy legally as food supplements from health stores. But there’s no guarantee that these are of good quality or provide any health benefits. I’ll just add to that, that whilst we in Pain Concern believe [that] the information and opinions on AiringPain are accurate and sounds based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and, therefore, [the one who knows] the appropriate action to take on your behalf. Well, I don’t want you to leave this edition of Airing pain under a cloud of gloom and doom. There’s more to the management of chronic pain than just drugs, legal or otherwise. So, in the next edition of Airing Pain, I’ll be exploring neuropathic pain. And how self-management techniques learned through a pain management programme can turn your life around. I leave you with Cameron Rashide, who spoke at the start of this edition of Airing Pain.
Rashide: Before I started this group, literally it was hospital-home, hospital-doctor, hospital-home. In the last eight years, I literally stayed at home because the pain is too much for me. I stopped going out to coffee shops and wouldn’t go out shopping on my own – everything online. Now, [the group has taught us] to practically do something outside the house. Last week, my weekly goal was to go to a coffee bar. And I did that – even though I was uncomfortable, I was in pain, but it was enough to pace myself, but not overdo it. So, it’s little goals, but achievable goals.
Contributors:
Dr Blair Smith, Consultant in Pain Medicine at NHS Tayside, and National Lead Clinician for Chronic Pain in Scotland
Dr Steve Alexander, Associate Professor in Molecular Pharmacology at Nottingham University
Chronic pain often exists in ways that cannot be seen. Due to the intangible and ambiguous nature of many chronic pain conditions that lack clear-cut causes and treatment, patients feel frustrated when communicating with healthcare professionals, personal networks, and the public at large; they feel ‘invisible’. Lancaster University’s English and Creative Writing department has built a research network to collect short-form ‘flash’ illness writing; pieces that aim to better represent people’s experiences of chronic pain.
In this edition of Airing Pain we hear from the project’s Principal Investigator Dr Sara Wasson about the many components that make up the project, its origins, and the goal of conveying the experience that millions of people go through every day.
Issues covered in this programme include: Arts and crafts, communicating pain, creative project, creative writing, culture, describing pain, educating healthcare professionals, explaining pain, inequality, intersectionality, misconceptions, muscle spasms, personal experience, poetry, representation of pain, spasmodic torticollis, stigma, visibility and writing.
Paul Evans: This is Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for health care professionals. And this edition of Airing Pain has been funded by the Arts and Humanities Research Council.
Multiple speakers: I want my mom. I want my mom. I want my mom…and Pain that just backs off for a while. The difference between the morning pills and the afternoon pills and the evening pills and the night pills and the pills and the pills and the injections and the appointments and the Pain… I want my mom… A rookery, long abandoned now, had been built inside my body. I don’t know where the birds went or why. One day, they uninhabited, leaving only their barbed-wire residues, strung across the boughs of my hips… I want mom.I want my mom… This deep, stabbing pain in both temples. The buzzing flight of sugar-fuelled hummingbirds. The way my entire body is filled with pain and unable to move from this chair… I want my mom. I want my mom…
Evans: In the previous edition of Airing Pain, we talked about how pain is measured; measured, that is, by scientists. As patients, however, whilst doctors may be able to assess our pain, rarely I suspect do we have the ability to communicate our private and deepest feelings about living with pain at any one given moment. As Pain Concern’s own ‘Breaking Barriers’ research project illustrated only too well, people living with chronic pain repeatedly report being marginalised and stigmatised by health care professionals, their personal networks, and the wider public. This invisibility, according to researchers at Lancaster University, is partly because chronic pain can be hard to turn into a story because of its unpredictability and resistance to clear cause and cure. So, rather than offering life story narratives to make sense of living with chronic pain, the university’s ‘Translating Chronic Pain’ Critical Creative Project focuses on representing fragments or moments of chronic pain experience through what they call ‘flash’ illness writing.
Sarah Wasson is a lecturer at the English Department in Lancaster University. She’s leader of the ‘Translating Chronic Pain’ project.
Sarah Wasson: Well, the project is really quite broad and has many components to it. But the bit that I’m going to talk about now is the creative project. And in that there are two particular sections, [but] the most significant [has] been the online anthology. We’ve asked people around the world to write short fragments of between five and 150 words that respond to or capture something about the experience of living with pain, or caring for others with pain, or working through some aspect of pain experience in the broader sense. So it’s a very broad call. The call for work was… we made it into a poem, after a collaborative project with pain charities and others. I felt very strongly that, if we were going to do a project like this, the goals of the project had to be specified and conformed collaboratively right at the beginning among many of us living with pain, pain charity representatives, medics, and academics. And it’s very important to me that, the whole way through, the project has not been about academics in one box, and people living with pain in another. Almost all the academics involved have either lived with pain themselves, or care for others who do. So there’s a lot of overlap between the creators and the academics and the people in pain. Many people are all three. We brought lots of people together and explored what short writing form might do; how it might be good, how it might be dangerous, what might be promising, and the perils of it, too. After that, I wrote the poem, which is kind of a call to arms – a manifesto. Shall I read it?
SINCE people living with persistent pain often suffer invisibility and struggle for legitimacy and credibility;
since long term pain is often assumed to be a temporary and unnatural state;
since pain experience is diverse and must be understood intersectionally (through interweaved categories such as gender, race, sexuality, and class);
since pain’s causes can be cryptic, multiple, personal, social, environmental, transgenerational, and hidden;
since pain science is neither widely understood nor well-funded, and requires wider dissemination;
since pain experience exceeds the language of medicalisation;
since pain undercuts illusions of human autonomy and self-sufficiency, showing all people are vulnerable and interdependent;
since pain may impair the ability to work, in which case those living it may be seen wrongly as not living a ‘useful’ life;
since witnessing pain makes profound claims on – and poses challenges for – carers, family members, and healthcare practitioners;
and since chronic pain affects every dimension of life…
…I call for creative work that engages these invisibilities, these lacunae, these intersections – moments in public or in shadows, in loneliness or connection.
YET – pain experience may not lend itself to established forms of either illness narration or survivorship story:
the experience may lack an ending where resolution is reached;
it may lack a beginning, its causes hidden;
it may break the positivity imperative – to be hopeful, a warrior, a survivor, a meaning finder;
it may be incommunicable, resisting representation, yet may simultaneously engender language;
it may be a story not (only) of a personal journey, but of wider social calamities and inequalities:
and it may resist plot, instead being a thing of fragments, glimpses, and moments.
Evans: This is the first time we’ve met. I don’t think that somebody who wrote that would not have experienced chronic pain.
Wasson: [laughs softly] Well, I can’t take full credit for writing it because it was… it emerged from the creative summit. But yes, I definitely do live with pain myself. I’ve got about – I think, at the last count – eight different ways in which… conditions [in] which that is part of it. I don’t generally share that as the first thing in the project, though, because I felt very strongly right from the beginning that I don’t want to limit the pain story or in any way set myself up as an authority. So I tend to be in the background with that.
Evans: It’s very interesting; you were talking about storytelling involving chronic pain. I can’t think of many great stories in popular fiction or television dramas, in fact, that feature chronic pain.
Wasson: I was thinking about this this morning, actually, when I was looking again at Virginia Woolf’s famous and amazing essay on being ill. And there’s that extraordinary line there, where she talks about how, when it comes to describing a headache, there isn’t really a long lineage of literary representation. And instead, what she says she wants to do is to grab the pain in one hand, and a lump of sound in the other, and squash them together to create something primitive, sensual, and obscene, which is an extraordinary kind of call for innovation. And there are many ways in which poets – and I’m thinking again of Emily Dickinson, in particular, actually – have tried to bend language in the way Virginia Woolf called for, but there’s still more to be done because there is something so subjective and elusive about that experience. And to get it to be taken seriously.
One of the things that probably drove me to do this – bring all these different activities together – [was] profound sadness at how much social science research has shown people living with pain feel invisible. And the word ‘delegitimate’ gets used a lot somehow – not rendered valid. And this came out through so much research, across all different countries I was looking at, and it’s a tiny response to that, I guess. It’s a way of trying to find ways of vividly communicating in short form. Also for hearers, to try and help [to make] the reality of that experience more available to people who perhaps don’t have that experience. It’s to try and help people on all parts of the continuum. That’s the hope.
Evans: Holly Hirst is a PhD associate lecturer. She has chronic pain and contributed to the ‘Translating Chronic Pain’ project.
Holly Hirst: I wrote two pieces about, sort of, different aspects of living with pain. One was about sort of the spiritual aspect, and one was about communication, I guess. So, one that I wrote was ‘The Exorcism of Spasmodic Torticollis’, which is what I have.
Evans: Spasmodic Torticollis… What is that?
Hirst: It’s an inherited neurological condition, which is one of the dystonias. It means that I can’t control the muscles in my neck frequently, and so that they spasm, causing pain, and that has… It can also spread through the body, so my arm and shoulder and top of my back are also spasmodic. So:
‘This is my best exorcist impression,’ I tell you with a grimacing grin.
I tell you it’s a horror movie to make you laugh. So that you can laugh at the girl controlled by demons. As her head turns full circle on her neck. As her smile screams with silent blasphemy. Because if you don’t laugh, you turn away. You’ll never follow Karras through the window. You’ll turn and walk downstairs, sit with Chris and hope it goes away.
Evans: The other fragment is ‘Doubt There Is No God’.
Hurst: So:
There is no God. I know it. I feel it in this agony. This violence. As my brain tricks my body into ripping itself apart. There isn’t. There can’t be. Please God. There can’t be.
One of the things that I really appreciated about this project is the ability to convey a moment, rather than to convey a narrative. And this idea that this could be a moment of thought, of experience that you have – that it doesn’t have to be a summary of your whole story. But those moments of desperation when, you know, you wake up in the middle of the night, and your body’s screaming, and there’s nothing you can do about it. When you’re trying to achieve something that you simply can’t achieve because your body won’t obey you. When you’ve been spasming for a couple of hours, and you can’t do anything about it, and people tell you things like, ‘Well, it’s all in God’s plan,’ or…
Evans: ‘I know how you feel.’
Hurst: ‘I know how you feel.’ And what your brain tells you – what your body feels – is that that cannot be true. Because this is so horrendous. When people say things like, you know, ‘The creation of the body is a wonderful thing,’ I don’t know what went wrong with mine. [laughs] So it’s that kind of experience, that kind of moment, without trying to put it within the context of humour, or telling a story about my whole, sort of, journey of faith. But just that moment that’s very real, I think, when you’re in it.
Evans: The fragment of time, the moment… We’re not talking about ‘This is my illness; this is how it affects me from day to day.’ It’s my thought, at a certain time.
Hurst: Yes, one of the pieces that moved me most: one simple phrase repeated multiple times. And that spoke to me a great deal because that is the experience that you have. I mean, I don’t know about everyone else, but my brain skips when I’m in pain. So I can’t think – I get stuck. It’s like my brain stutters, and that thought will just come again and again and again.
Unknown speaker: ‘I Want My Mom’ by Socks.
i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom…
Evans: Those feelings… I think many people with chronic pain have actually felt that. You know, we know all the management techniques – this, that, the other – but there are times when you just think ‘I hate this.’
Wasson: Yeah… This is something that I was so grateful to see happen. I didn’t know what kind of range of work we would get, but the emotional range has been colossal. So there have been works of a hopeful moment, and which we all have also. But somehow the fact that it was a moment or glimpse meant people were freed from the compulsory optimism of the long story, which is a bit of a fierce way of putting it. People living with pain do have to internalise certain kinds of management strategies that do tend to orient more towards the hopeful. But this kind of seemed to give a safer space where people could explore a range of emotions, which weren’t always totally just upbeat – they were a range. One of the poems that came early in, and I would love to read, was Roseanne Watt’s ‘The Diagnosis’. I thought this was such an extraordinary work because it captures that suspense and fear that can attend on a diagnosis [while], of course, on the other hand, many people living with pain do not get one – do not get a diagnosis – and really would like one to be taken seriously, as well. So, this is what Roseanne wrote about with ‘Diagnosis’:
A rookery, long abandoned now,
had been built inside my body.
I don’t know where the birds went
or why, one day, they uninhabited,
leaving only their barbed-wire
residues, strung across the boughs
of my hips; all sticks and spit,
all hollows meant for holding
something small, still desperately
alive. I’m sorry – I’m afraid
I know only my own dark canopy,
its filtering bones of light
Evans: It’s very, very… moving, and obviously very, very personal. I don’t know what condition Roseanne lives with, but there is a common sort of feeling. I thought when I found out about this, ‘Well, I’m going to write something myself.’ I couldn’t do it.
Wasson: [gasps in astonishment]
Evans: Because it was almost like, learning to live with a condition, you are conditioned to that condition, and I don’t want to step off that condition, and let my barriers down, if you like.
Wasson: Yeah… Very interesting.
Evans: Because a lot of these are pretty dark.
Wasson: Something that’s been very striking in the way that people have responded to the project, the email and the feedback that we’ve had, which has been very moving, has been relief at the validation of those moments, actually – of the not feeling alone, and the waking at 3am, as you said, Holly, you know. Without saying that despair is the only way in, I think it sometimes is part of the moments and fragments. And I guess if part of that’s what this anthology is showing, then I’m glad.
Unknown speaker: ‘pain and Pain’ by M-S-Y from the United States.
The difference between lowercase-p, pain, and uppercase-P, Pain, is huge.
Bigger than just a shift-key should make it.
The difference between ‘Yeah, let’s go on a hike today!’ and ‘I can’t walk today.’
The difference between pain that ends, and Pain that just backs off for a while.
The difference between the morning pills and the afternoon pills and the evening pills and the night pills and the pills and the pills and the injections and the appointments and the Pain.
The differences between the screaming in your head and the screaming locked in the gilded cage in your throat, and the knowledge that it is a bird that will never die, it will just remain in you, like a bird throwing itself against a window pane. Yes, pain and Pain are so completely different, I can’t believe they’re even spelled that same way.
Evans: Ones that I found rather moving, and I think – perhaps I’m wrong here – it’s about relationships, it’s about loneliness…
Wasson: Yes, this beautiful fragment by Lucy Goodwill:
She is struggling with the concept of her body as a sensual object. She lifts the covers, brings her feet to meet the floor and winces as she stands. Legs laced with his now buckle as she walks, and shockwaves sparked by his touch are replaced by short-circuiting pain in her nerves.
Soft lips, coarse hair, hot skin, cool sweat, forget the pain, leave that ‘til morning. She makes it to the door; tries not to wake him so he won’t see her transformation. From time to time she indulges in the mythology of her beauty; an existence where physicality means something other than her suffering.
She pours the coffee that will focus her, swallows tablets that will soothe, takes a shower and embraces the heat that reaches deep into her bones. She follows the steps that will make her feel human and, symptom by symptom, she rebuilds the myth.
Evans: It’s written in the third person, but I’m assuming it is that she is the person. To me it appears it’s somebody looking in a mirror at somebody who’s not there.
Wasson: The extraordinary thing that strikes me through a lot of the writing in the project, and indeed in a lot of the other writing around chronic pain in memoirs, is the strange play of absence and presence to the self. The ways in which, in some ways, one’s experience becomes so… almost overwhelmingly alien, and one’s body becomes deeply estranged sometimes. And I think that the third person captures it so well. [Also], what I love so much about this poem also is it shows how pain affects subtle, intimate parts of life. And, in this case – both her romantic and sexual relationship – it’s of the persona and the speaker, but also the sense of one’s own appearance, and the labours – the everyday, ordinary labours that everyone does… kind of, you know, hygiene – that become much more complicated and interesting. And the myth of her beauty, the mythology of her beauty, is something that’s presented as achieved with extra labour effort. It’s almost a lie, yet a lie that she’s invested in.
Unknown speaker: ‘Food for Thought’ by Ryan Michael Dumas.
Just got a letter from disability insurance: Denied. I’m not disabled enough to get anything. After months of trying to convince them.
How do you prove you can’t work?
I cannot sit up, stand, or walk hardly at all. There is no job I can do while laying down, without having to make phone calls.
Just laying here, my back aches. But it’s the most comfortable position I can find. (It hurts my hips but those aren’t important.)
If I dared to sit up, my lower and upper back would scream in agony. It would not end until I laid back down.
I couldn’t keep working; had to move back in with my toxic parents. I have no money, no freedom, and no chance. I have no future. And that terrifies me.
I’m a survivor. The world wants me dead. It’s only a matter of time.
Evans: The creative arts have been used as a way of managing pain. Music, going to sing in a choir, group participation in the arts… But this is much more digging into yourself – private stuff.
Wasson: On their own, each one is a kind of separate jewel, [and] can seem quite, perhaps, introspective and… kind of individual. But the mass of all nearly ninety of them together, and the way that one navigates through the site using the ‘randomiser’ button, for example, makes them feel like they come into interesting points of tension and conflict and reinforcement. So it’s a very vibrant encounter, I found, and the credit for that must really go to Zoe and our other colleague, Jenn Ashworth, who had the idea for having that navigation interface.
Zoe Lambert: I’m Zoe Lambert. I’m a writer and lecturer in creative writing. I run one of the workshops to help develop writing in pain and chronic pain. Sarah asked me to be involved because I’ve done quite a few community-based workshops; also because I come from experience of pain as a carer. And, having witnessed the unusual forms of pain, of multiple sclerosis, that my mother’s had for twenty years… [and] how sometimes she’ll try to describe the strange sensations, and really struggle because it’s not just ‘Oh, it hurts’ – it’s a lot different. And that really influenced my approach to the workshop because I was thinking around touch, and ways of describing sensation and feelings, and brought that in, in different ways, in the kinds of activities we ended up doing on the day.
Evans: As a carer, highly involved with something – an outsider, in many ways, looking into somebody’s pain.
Lambert: Yeah, I kind of appreciated what you said before around finding it difficult to start writing about pain. And, in the workshop, I kind of wanted the activity to offer ways in – in how you might describe pain through metaphor and images. I did a warm-up exercise around fabric, which [hasn’t] really got anything to do with pain, but I was thinking more about sensation, because even how [you] describe sensations and how things feel like isn’t easy. So I brought in lots of pieces of fabric – you know, cut offs. I saw some, kind of, scratchy, soft things – fluffy, feathery – and used that as an opening exercise to write about the fabric and how it made you feel, and the sensations, and then, kind of, words that you associate with that feeling. And the sensation of touching it, and then if any images or memories were then generated from that. So, kind of using this idea of touch as a way to think about our body and how we feel, because you’re not having to write anything personal there – it’s more about the fabric.
And I often find that objects are very useful for tricking people into writing without worrying about it… and overthinking. From that, thinking about how you can write about pain through images and metaphors, and getting the participants to write lots of different ones. So that you’re not… you don’t feel like every word has to be precious. So, pain is a colour, an object, a place, a number, a city, a time of day, a sound, and [also] what pain isn’t. And so, with the same idea: so, pain is not a colour, pain is not a certain object or place. If you write quite a few of them, you’ll have lots of different ones, and maybe just one stands out, and you like that, and you’re like, ‘Aw yeah,’ and then running with one and developing that idea. And, oh look, you’ve got a poem – and without even trying.
And also, I was interested in medicalised spaces as well. If you’re ill or a carer, you often spend a lot of time in doctor’s surgeries and waiting rooms and hospitals, which are very particular. And they smell certain ways, don’t they? And there’s a certain kind of look to them. So, I got participants to kind of write about that and… and I think that’s another way in, and that sense of a moment, a moment of waiting.
Unknown speaker: The way the scent of the air changes as the day goes on: the warming sweetness of morning; the sharp resin of fir trees as the sun heats the day; the cool, soft evening air with the ground and lake and all the waving leaves mixed in. The way the early evening light strikes the birches and makes them chiaroscuro dramatic. The way my feet burn. The smudged charcoal underbellies of terns over the green water. Their sliding paths through the air. This deep, stabbing pain in both temples. The buzzing flight of sugar-fuelled hummingbirds. The way my entire body is filled with pain and unable to move from this chair. Heavily, here, just so. That bird, there, hopping from branch to branch. Almost hidden. The feel of my skin as a gentle breeze touches the side of my face. The things I long to do. That dragonfly, there, and the sun behind its wings. Every dancing leaf. The air again: changing.
Evans: ‘In Stillness’ – a fragment, a moment, contributed by D. Phoenix from Canada to the ‘Translating Chronic Pain’ project.
Now, I just need to remind you, as I always do, that we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available. You should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you, your circumstances, and therefore the appropriate action to take on your behalf.
You can download all editions of Airing Pain from Pain Concern’s website, which is… painconcern.org.uk.
The ‘Translating Chronic Pain’ project is ongoing, so we can carry on submitting our own moments or fragments at the permanent website, which is: wp.lancs.ac.uk/translatingpain. Or just put ‘Translating Chronic Pain Lancaster’ into your search engine.
Wasson: The site has a lot of resources on it that would be of interest, including pain support, and information on the academic dimensions of the project. But the absolute priority of the site is the Anthology, and the Creative Manifesto, and we welcome submissions from anybody who feels moved to contribute. We don’t mandate that they have certain kinds of pain, or that they are living with pain, or that they are specifically carers or practitioners, and it’s international.
Evans: What sort of advice would you give to people who are listening to this now, who would like to write something, but they don’t know how to do it?
Lambert: Get a nice new notebook, first of all. If you’ve followed the metaphor ideas, and then, kind of, the idea of listing different images, or ways in of describing pain, and doing a lot of it, and then writing lots of different images. There’s a lovely writer called Natalie Goldberg, who’s written a wonderful book called ‘Writing Down the Bones’. And I think that’s an amazing book for helping people to start writing, and throw off the shackles and fears, and any little voice in your head that might be saying, ‘Oh, you’re no good – you got terrible marks at school in English,’ you know, or anything like that. And because it’s all about practice… And starting a diary can be really good. The daily practice of writing, of just getting your thoughts and feelings down, and not judging yourself as well, not letting that little voice in here say, ‘Oh no, no one wants to listen to what you have to say’ – anything like that. But just getting it down. And I think building up a writing practice of writing every day is really important. We always expect ourselves to write brilliantly the first time. That’s not true. So you have to let yourself develop your voice and just get words on the page.
Wasson: There’s a lovely poem that’s occurring to me now by Ruth Victoria Chalkley, who submitted several beautiful works. And it’s a response to getting new splints. So, taking just a moment, thinking of the moments and glimpses as an empowering framework, you know – just a moment in a day – she gets these splints, and she thinks about how they rattle, and kind of scrape, especially when they’re new and [scratchy], as many of us will probably remember. So, little details like that – taking a detail and just hanging out with that detail, that moment of time, without the burden of trying to make sense of one’s whole life in prose. Just, where are you right now? Sitting in your chair, standing, moving, thinking about something… Just that moment. Let’s have that glimpse. Let that glimpse breathe.
Hirst: For me, the thing that I would say is: take the thought that you keep having that you can’t tell people about – that you don’t express to people. So, for me, for example, ‘There is no God’ – that’s a thought that’s gone through my head multiple times. But it’s not something you talk about because then it becomes a narrative and a drama. A phrase that you know that the people who you’re with won’t be comfortable with you saying. Things like ‘Don’t go away, don’t touch me… right now,’ and you can use that, and develop from that. Use those things that you’re not allowed to say or you’re not allowing yourself to say, and work from there as another sort of place to start. Or take the thing in the other poem that I wrote; take the thing that you always say but that you’re hiding behind, and let yourself be seen behind it.
Evans: And, what I would say, whether you write something or not, just read them, and that might inspire you to write.
Wasson: I think it really will because there’s so many different ones, aren’t there? There’s such a range of voices, and so inspiring. Many people using photographs and artwork alongside it, too. Each really giving you a momentary glimpse. And, the more, the better, because pain needs to be seen and needs to be heard.
Contributors:
Dr Sara Wasson, English and Creative Writing Lecturer, ‘Translating Chronic Pain’ Lead Investigator, Lancaster University
Holly Hirst, PhD and Associate Lecturer in English, Manchester Metropolitan University
Zoe Lambert, Lecturer, English and Creative Writing, Lancaster University.
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