In the second part in Airing Pain’s series on complex regional pain syndrome, Paul speaks to specialists and patients at the Royal National Hospital for Rheumatic Disease CRPS rehabilitation programme in Bath.
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This programme was funded by grants from the RS MacDonald Charitable Trust and the Hospital Saturday Fund.
Complex regional pain syndrome affects 1 in 3,800 new people every year in the UK. It is a poorly understood condition and it can be frustrating for patients who are suffering to find peace of mind. The Royal National Hospital for Rheumatic Disease in Bath began its rehabilitation service for individuals with CRPS in 1999 and is one of the very few in the UK with outpatient and inpatient care dedicated to CRPS.
The centre, led by Professor Candy McCabe, strives to improve patients’ lives through up-to-date multidisciplinary techniques ranging from occupational therapy to mirror visual feedback (MVF).
Michael and Julie, patients currently enrolled in the rehabilitation programme, speak to Paul about the injuries that caused them to develop the syndrome, how it affects their lives, and how the programme is helping them cope.
Paul also sits in on a session with Senior Physiotherapist Emma Houlihan and patient Chris, whose entire left side of his body has been affected by CRPS, to explore the therapies used at the centre to try to help him regain normal sensation.
Clinical Specialist Physiotherapist Jane Hall describes the process that new patients will go through, and how the centre helps patients even after they have left the programme.
 NHS: http://www.nhs.uk/Conditions/Complex-Regional-Pain-Syndrome/Pages/Introduction.aspx
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, and this is the second on a series of programmes about complex regional pain syndrome or CRPS. It is funded by grants from the R S McDonald Charitable Trust and the Hospitals Saturday Fund. In the previous edition of Airing Pain no 94 which you can download from the Pain Concern website we established that CRPS is a condition in which a person experience persistent severe and debilitating pain which is usually confined to one limb but can spread to other parts of the body. The skin of the affected body part can become so sensitive than even a slight bump or even change of temperature can provoke intense pain. Professor Candy McCabe, Clinical Lead for the National Centre for the management of CRPS at the Royal National Hospital for Rheumatic Diseases in Bath. I will just remind you about what she said about a new approach for managing CRPS that they are adopting with their patients.
Professor Candy McCabe: Try and access that information underneath the pain because it is there, try and find it and its really extraordinary how people can suddenly find that information that they though was lost to them and low and behold and start the focus away from pain into more normal sensations. So we just starting on this journey, still very experimental but it intuitively feels the right thing to do. It’s really exciting.
Paul Evans: such enthusiasm can’t go unchecked so I went along to the National Centre for the management of CRPS in Bath where senior Physiotherapist Emma Hollihan was working with CRPS patient Chris Jones.
Emma Hollihan: Again just try to remind yourself what was so nice about it. That nice feeling of just being there with your brother and sister and it was stone wall you were sitting on wasn’t it. Just trying to remember how you could just let everything go while sitting on the while. Can you get that feeling of how it felt to let it go on the right side, how that felt?
Chris Jones: Sitting there basically kicking this leg around
Emma Hollihan: so this is a memory from when you were younger?
Chris Jones: Yes
Emma Hollihan: and it’s still a nice memory?
Chris Jones: Still nice memory yes, still do that
Emma Hollihan: Do you?
Chris Jones: Yes can’t really do as much now
Paul Evans: We will get back to Chris and Emma later. In the meantime let’s find out more about the CRPS rehabilitation programme in bath. Charles Smith in clinical specialist in occupational therapist on the team
Charles Smith: – It’s a great programme we are really proud of how it has developed. It has been developed over a number of years but basically come here for two weeks and they live with us in the hospital here and have a full programme of activities so every day they have physical therapy, occupational therapy and hydrotherapy and we access to phycologists and a mixture of one to one sessions and workshops which are short and sweet half hour sessions on things like, managing your sleep, nutrition and longer sessions like understanding CRPS and how to communicate with people about pain, thinking about how your manage your own activity, control of life again. Broad ranging programme. We do relaxation every day but we found it very important for people to dampen down their nervous system when treating CRPS and it is helpful can carry on and do that themselves when they leave, It’s a great programme and quite intense people get a lot out of it.
Michael Kennel: aged 56
Jane Morrison: aged 46
Paul Evans: We are on day four of your CRPS rehabilitation programme program in Bath. How did you get CRPS?
Jane Morrison: I got thrown from a horse and from there I had lots and lots of operations and it just caused it basically
Paul Evans: What does it feel like?
Jane Morrison: Very painful, horrendous and people just believe you because they can’t see anything
Paul Evans: That is very common with chronic pain conditions
Jane Morrison: I think if I had got my arm in a sling it would be better, people would stay away from me but because they can’t see anything you just have so many people touch you and it just so painful and they can’t work out why that was so painful and it was only a little touch and it should not have hurt
Michael Kennel: Mine was an accident at work, it was something as simple as just changing a water bottle, one of the bigger ones pulled a muscle in my arm, the op went ok but they had to keep in a plaster cast for three months than further three months for muscle to grow back on. When they took the plaster cast off it still felt like it was on. I started to get some really bad feelings on my skin with it being red hot, freezing cold, no sense to it, arm swelling up and caused pain from the swelling and it has now settled itself to the lower part of my arm but it is spreading to my face, back and right leg now through one simple accident but again as Jane said it is very difficult to explain to people, constant pain the constant swelling you just can’t get it out of your head, it’s there all the time. It’s almost like someone has put massive chunk of chain mail on one side
Jane Hall: My name is Jane Hall and I am Clinical Specialist Physiotherapist with the CRPS service with the Royal National Hospital of the Rheumatic Diseases. So at a new patient appointment they will see Dr Brook who is our pain consultant and Professor Candy McCabe who is our clinical lead. They will confirm or refute the diagnosis of CRPS because quite often we get sent patients who don’t actually have CRPS. They must have something completely different like fibro, and because we have seen so many patients with CRPS we are quite good at telling, so at that appointment patients will be given a diagnosis or a different diagnosis may be given or we will say we don’t know we need to refer you on to a different specialist but it is not CRPS. If it is CRPS then patients will be invited to come back to see us in about 6-8 weeks to an appointment where they will see myself as a physiotherapist or my colleague who has a similar position to me as an occupational therapist alongside our psychologist and we will assess on how the patient has engaged with any of the initial recommendations that were given in the first programme but equally it’s not just our decision, crucially it is the patient’s decision. Do they want to come? And for them to know whether they want to come they need to understand what they are coming too, so we spend a lot of time explaining about what we do here. We give them a leaflet which tells them about the programme, very often they would have read this on-line before they come and we often ask them to have a look at our you tube video which talks about the programme, so they can make as informed a decision as they can about coming
Paul Evans: I will give you all the details about where to find this information on the CRPS rehabilitation programme in Bath later in the programme. Now at this point I will just remind you of the small print in that “whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available you just always consult your healthcare professional on any matter relating to your health and wellbeing. He or she is the only person who knows you, can offer advice on your behalf and don’t forget you can download all editions and transcripts of Airing Pain on Pain Concern’s website which painconcern.org.uk and there you will find information and support for those with chronic pain, our families and carers and for healthcare professionals. There is also information on how to order Pain Concern magazine “Pain Matters”. Now back to Chris Jones who is a Senior Physiotherapist of the National Centre for the Management of CRPS Emma Hollihan.
Emma Hollihan: Did you have a go at using that memory?
Michael Kennel: Yeah and I tried it this morning and last night and whatever twitch was it still invigorating
Emma Hollihan: – Good good, nice
Michael Kennel: The goose pimples on the side of my face
Emma Hollihan: yeah but that is a different sensation to what you normally getting and it doesn’t sound like it is massively unpleasant, is that right?
Michael Kennel: no it’s not massively unpleasant it is unknown, I have not had that sensation, I don’t recognise that sensation
Emma Hollihan: we know what you have difficulties in understanding what is happening on the left side especially in your leg because this is what we are focusing on now so I will just talk about your leg for the moment. What we are trying to do is to is change some of sensation he is experiencing so at the moment you are just experiencing lots of weird things and you don’t really know what is going on with that side
Michael Kennel: it’s new
Paul Evans: what are you feeling?
Michael Kennel: I don’t really connect to the leg at all, I don’t have any feeling, it’s all disassociated, to feel a new sensation that I have not felt for seven years is mind-boggling to me
Paul Evans: so this is a new sensation you are feeling since coming to the rehab programme
Michael Kennel: – yeah and its exciting on one hand but on the other and there is also anticipation on the other on what’s next or how I respond to that sensation which yesterday was building this morning
Emma Hollihan: that can be really common with these kind of things, we are doing lots of work in trying to use memories of how things felt in the past so how just trying to retrain how to feel I suppose so we do use memory work around how did it feel before to try and retain the nervous system to search for more normal sensations and to recall those more normal sensations as opposed to just you experiencing lots of weird and really uncomfortable sensations on your left side and it can be quite emotional and actually that can help.
Michael Kennel: I think that is why it has been building since this morning
Emma Hollihan: yeah yeah
Michael Kennel: so not connecting to the group correctly and just wanting to take a bit of time out to make sense of what has been happening.
Emma Hollihan: – yeah yeah it is really common to feel like this and to feel about funny about it all and just wondering what the hell is going on
Paul Evans: So just explain to me in the last edition of Airing Pain I spoke to Candy McCabe about this process of tricking the brain to remember what is was like before
Emma Hollihan: when we are doing this it’s not really like trying to trick the brain, it is just trying to get the brain to reengage with this side of the body and just trying to get the brain to recall how normal sensations felt and trying to bring that into the present day so we do a lot of work if you were trying to remember how it felt to sit on this wall and it was a really nice memory because you were there with family members and because it is such a clear memory I suppose you are telling the nervous system this is how it felt this is how it should feel and trying to bring this to the forefront of your mind to bring it to the present day. It might sound like it is a really psychologically heavy technique but it just trying to get the brain to search for more normal sensations and to remember what normal feels like
Michael Kennel: yeah because I don’t see parts of my body, if I shut my eyes and try and remember what the body looks like I don’t see that so these new twitches and connections that I am trying to make right now is unnatural
Paul Evans: I don’t understand what you mean by you can’t see your body?
Michael Kennel: I can’t see/picture the left hand side of the body. If I shut my eyes and think about what it looks like I can’t picture that. There is limbs missing there are parts of things missing so to try and connect with the leg that doesn’t actually fit into my memory then it is unnatural
Paul Evans: I wonder if people come here who are jaded in that this is just another island that I have been pushed to one and the other that they could become jaded or they could become really buoyed up, that it is I have arrived
Emma Hollihan: so we get both and it is about managing expectations so when patients are very buoyed up because they have been referred to the National specialist centre for CRPS they come with very very high expectations which usually involve “I hope they are going to cure me” and we have to help patients manage those expectations because unfortunately we cannot offer cure, we can teach patients ways of managing their condition better. Equally when patients come very jaded they often feel what is the point of coming, so again we encourage them to look at our information and say what have you go to lose by trying it, come and see what you think. Generally I would say of the patients we see about 80% or 90% percent will come on the programme. Sometimes we get patients though who don’t really need to come on the programme but because they have fantastic local input or the severity or impact of their condition means that there would be an awful lot for us to do on the programme so those patients are managed in the outpatient clinic and generally what we do is treat the patient what they need to go away and do and then ask the patient to come back and see us 3 months or 6 months later having put into place these different aspects and see how they get on and that can work really successfully
Paul Evans: tell me what state you were when you came in and what state you hope you will be in when you leave in six days’ time
Michael Kennel: I came in in a slightly negative state, just because of past experiences and I didn’t know whether or not these could put me in a positive frame of mind but I am giving it all I have got and I have made some progress and I will continue to make progress. The hardest part is going to be putting a flat foot on the floor but I think I will make that in the next week
Emma Hollihan: yeah there is every chance, it is a changeable condition so it is really important to keep that in mind and I think you are making some really good progress. It is possible it is just taking it day by day and really just trying to pace things, give things a go and keep an open mind with it as some of things seem a bit weird don’t they, like some of the techniques used, they are a bit strange but you are going to have to crack on with I am afraid
Paul Evans: moving on to now or rather four days ago when you started this rehab programme, what were your expectations?
Chris Jones: mine are just basic things, I just want to show them ways to manage the pain more in practical level, just to do my own hair, it sounds really silly but you just get your independence back then so you can get yourself up and out. I am reliant on somebody all the while, this was my aim to manage it, because you don’t and that makes it worse you get stressed because you are in pain and that makes the pain worse
Michael Kennel: I think it is slightly easier for a man because ok I might occasionally get the wife to wash my back or something if it is a bit difficult for me in the shower, because it is difficult to just get water to touch your skin
Chris Jones: water is a killer on your skin
Paul Evans: I was just taking with Julie who was talking about showering which I can’t remember the exact words she used but basically it is terrible. How do you help someone like that?
Emma Hollihan: That is probably where I would hand over to Kerry who is our specialist physiotherapist.
Paul Evans: I have never heard the buck shifted so fast
Kerry: I know but it is the way we work so we in an multi-disciplinary model and we work very very closely probably more closely than a lot of multi-disciplinary team environments. There is a huge amount of overlap in terms of what we do in relation OT and physio. We don’t think about it as stepping on each other toes we think about it in enhancing very much what each other do, so we will constantly be talking about how we can complement the treatments. So with something like that it might immediately appear to be a very functional issue which people might think that OT completely and some of it might be, so we may some involvement from the Occupational Therapists down in hydrotherapy for example helping with practical side of showering and helping to improve it from that prospective and also we would work and I know you spoke to Emma earlier on a little bit about our neuro cognitive approach that we use. So we could along with the OTs, use various form of along with a neurocognitive approach to help improve the patients perception of water, so usually when someone is struggling with water in that experiencing that as a painful stimulus it is when they have CRPS because their perception of contact from water is altered. So we know that the contact from water should not be a painful stimulation but for them it is experienced in a painful way but that is because they are misperceiving that contact so we would work using the neurocognitive process in order to alter the way they perceive that and try and normalise it. So basically teaching their nervous system to experience water in a normal way again and we would use that therapeutic process as physios but also working closely with the OT to kind of integrate those techniques into everything the patient is doing and it may be not that water is a complicated one, so I think we would not actually start with water we would probably start in another way but it would probably be working towards achieving that as a goal
Paul Evans: I make the faux pas earlier of calling what Emma is doing a talking therapy, a psychological approach and I was corrected, what is the difference between a psychological approach and neurocognitive approach?
Kerry: Again there is an overlap and I would not want to way there is no psychological aspect to that at all because of course there is with anything that you do in that way, there is going to be a psychological element to it. I think the way we like to think about it is that it is not about using psychology to change how you feel about things. Reducing someone’s anxiety about for an example a particular contact if we were talking about contact with water will help of course if someone is more comfortable with the idea of being touched with water, less anxious about it that that is going to mean they have a better neurological experience of it and we know from the literature as well in that if you change someone anxiety about something you will not only change their behaviour but their experiences and how they feel but the neurocognitive approach is actually more than that it is actually about changing your nervous system’s ability to perceive things. It is working with your nervous system, not just your brain in term of the psychological side of things
Emma Hollihan: so what we happening with that memory
Michael Kennel: I was just sitting on the edge of that bridge, it was way way back, gently kicking the right leg about
Paul Evans: So what did you feel your left side there?
Michael Kennel: it is sort of like a leg twitch but I have never had that type of sensation, not for the seven and a bit years. That is quite scary for me because that means something is engaging and to me that is quite overwhelming. I can feel myself can quite upset about it because it’s like a new sensation and to have been in this position for the last few years it is quite overwhelming
Paul Evans: as Emma was working with Chris who has no sensation of feels his left hand side, is not there, what I call visualisation in what he was doing in taking me back to a place where I was very happy so I saw that as visualisation but he had a physical reaction to it but I just had a feeling about it.
Kerry: this is a very important differentiation to make actually that you have picked up, it is not a visualisation, often the patients will start with the visual aspects so if you were to do it as a relaxation of mediation you would focus less possibly on the visual side. For neurocognitive approaches it is really important that you focus on the sensory aspect, so focusing on what you physically experience and sense within that memory. So again you have the phychoi8lical aspect of the fact that it may have a very relaxing pleasurable experience but equally we really need people to focus on what they are experiencing on a sensory point of view and that is really what makes the sensory memory effective in this technique. So the sensory aspect is more important than how the memory made you feel of being able to visualise it. You can start off with that but we have to very quickly guide the patient to the sensory aspect of it and the physical experience
Paul Evans: patients can spend a fortnight here and in this environment they could be really enthused and with your support and the support of all the staff here it is a fantastic facility and on that second Friday do you pull the rug out for underneath them and say you are on your own
Emma Hollihan: So the patients know what to expect. We warn patients that when they go home they lose that cocoon like experience and everybody understood them and that can be quite hard for patients so we warn them quite often their mood can often that there mood can go down after they have been here but we also hope that we have given them sufficient self-management tools so that they know how to get back out of that and don’t forget they have ben with six or seven eight other patients who have a similar condition who they have bonded with over the two weeks and we are quite keen for them to use that social network to help them. They also have the CRPS website which my colleagues Dr Jenny Lewis and Lisa Buckle are responsible for. Although the team obviously helped so the CRPS website allows our patients to log on and effectively recreate their two week programme with the information and the videos that are open that site. So they can listen to Charlie giving a relaxation tape from the comfort of their own home. They can see myself doing Chegone with Kerry so we very much encourage patients to go on that website. They also know that they are coming back to see us at a three month review appointment. Where we evaluate how they have got on with all the information we give them on programme and to help them set new goals.
Paul Evans: so you are not throwing them to the wolves?
Jane: we are not throwing them to the wolves at all – after three months patients are invited to come back at a six month review. At that stage we are generally saying to patients. Ok well you know we have taught you what you need to know, here is the CRPS website which is your choice to use or not and we think you are ready to fly on your own now so let’s give you a little bit of support with that and do kind of graduate it to hand holding and lets transfer you to what we call the open access phase of the programme and this phase essentially allows for patient initiated follow-up so it very much puts the onus on the patient to contact us if they feel if they need us
Paul: Before Jane we heard clinical physiotherapist Kerry Johnston. Now those all important links for patients and healthcare professionals
The National Centre for the management of CRPS is in Bath and the website is RNHRD.nhs.uk/page/79 but if you put CRPS Bath into your search engine it should get you there. The CRPS network is also run by the team in Bath is another excellent resource and that is at CRPSnetworkuk.org. Don’t forget you can download this and every edition if Airing Pain at painconcern.org.uk and please do leave your comments in the feedback section. I will leave you with Mike and Julie
Michael Kennel: these guys are absolutely brilliant, the programme they put you through here because this is my second time and you do get the stage where you can’t cope so you have to come back and the programme they set out here is too allow you to pace life and enjoy a little bit of life back and they can only help you cope with the pain they can’t take it away from you and I think that is the first learning curve you need to learn here. They can take away as much as they can with drugs, living with it and managing it
Paul Evans: and learning how to self-manage it?
Michael Kennel: yes that is absolutely spot on because when you walk away from these guys, you are only hear for a short period, as soon as you walk away from these guys you are back in the outside world by yourself. The most that we have found is social media networks for opening up CPRS up to people. We have found some much information on line and you get to talk to other people is where you need to go to see how they manage it, what they do, their little tricks and some of them are absolutely brilliant you might not have thought of it yourself but it is just tiny little stuff
Jane Morrison: it is good to be here though because you just – for a better word you feel normal because there are other people and you don’t have to pretend that everything is ok when it is not really
Michael Kennel: and these guys know that you have a problem
Jane Morrison: that makes it feel better
Michael Kennel: because they know directly that you have got a problem full stop. They don’t have it themselves but they see so many people who have got it they know what you are going through
Jane Morrison: They are just believing in you
Michael Kennel: that’s it
Jane Morrison: just to believe that is real is so good
- Professor Candy McCabe, clinical lead for the complex regional pain syndrome service.
- Emma Houlian, Senior Physiotherapist
- Charlie Ewer-Smith, Clinical Specialist Occupational Therapist
- Dr Jane Hall, Clinical Specialist Physiotherapist
- Keri Johnson, Clinical Specialist Physiotherapist
- Chris, patient in the rehabilitation programme
- Michael, patient in the rehabilitation programme
- Julie, patient in the rehabilitation programme
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