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Transcript – Programme 2: Nerve Pain and How to Manage it

How prob­lems with the ner­vous sys­tem can give rise to chron­ic pain, a per­son­al suc­cess sto­ry of pain man­age­ment and a Q&A with pain spe­cial­ist Dr Mark Turtle

To lis­ten to this pro­gramme, please click here.

Eliz­a­beth Car­ri­g­an of the Aus­tralian Pain Man­age­ment Asso­ci­a­tion talks about how pain man­age­ment tech­niques helped her come to terms with chron­ic neu­ro­path­ic pain after spinal injury. We speak to experts on neu­ro­path­ic pain about how nerve dam­age can lead to pro­longed pain and the drug treat­ments avail­able, includ­ing amitripty­line, anti-epilep­tic drugs and the more con­tro­ver­sial opi­oids. We also take a look at the issue of chron­ic pain after nerves are dam­aged in surgery or chemotherapy.

Also in the pro­gramme: Dr Mark Tur­tle is in the chair for our Q&A ses­sion pro­vid­ing answers to your ques­tions about liv­ing with and man­ag­ing pain.

Issues cov­ered in this pro­gramme include:  Activ­i­ty, amitripty­line, anal­gesic, anti-epilep­tic, anti-inflam­ma­to­ry, can­cer pain, cap­saicin cream, CBT/cognitive behav­iour­al ther­a­py, chemother­a­py-induced pain, chick­en­pox, codeine, dia­betes, drug, exer­cise, gabapentin, her­pes, hyper­sen­si­tiv­i­ty, irri­ta­tion, joint, med­ica­tion, mor­phine, nerve dam­age, ner­vous sys­tem, neu­ro­path­ic pain, opi­oids, post-her­pet­ic neu­ral­gia, post-sur­gi­cal pain, pre­ga­balin, pre­scrip­tion, psy­chol­o­gy, rash, relax­ation, shin­gles, side-effect, spinal injury, stretch­ing, TENS, tri­cyclic anti­de­pres­sant, Vel­cade and Versatis.

Rachel Yorke: Hel­lo and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern. We’re a UK char­i­ty that pro­vides infor­ma­tion and sup­port for those who live with pain. We won first prize in the 2009 NAPP Awards in Chron­ic Pain, which has enabled us to make this series of pro­grammes. We also have addi­tion­al fund­ing from the Big Lot­tery Fund’s Awards For All pro­gramme and the Vol­un­tary Action Fund com­mu­ni­ty chest.

Dr Bev­er­ley Col­lett: There are 7.8 mil­lion peo­ple in the UK with chron­ic pain ­– that means one per­son in every four house­holds has chron­ic pain.

Dr Sher­rill Snel­grove: There are reports from patients that they are not under­stood very often and that they feel they are giv­en a low pri­or­i­ty in the health services.

Kiera Jones: I’ve been through the whole rig­ma­role of doc­tors, spe­cial­ists, MRI scans, x‑rays, ultra­sound scans — the lot.

Yorke: I’m Rachel Yorke and I’ve been in chron­ic pain for six years. Each fort­night, Air­ing Pain will look at the top­ics that affect us: the cop­ing mech­a­nisms, med­ical inter­ven­tions and ther­a­pies that might help us to regain con­trol of our lives.

Dr David Laird: On a good day we want to do things – we want to achieve things – and that means that we over­reach, we’re over­ac­tive, and we want to live our lives with­out the pain inter­fer­ing. And that’s part of the whole aspect of the loss that pain induces.

Yorke: But look, the pro­gramme isn’t just for those who have chron­ic pain. It’s for our fam­i­ly mem­bers, friends, sup­port­ers and car­ers, and also for health pro­fes­sion­als who wish to have a bet­ter under­stand­ing, and share the views and strate­gies of col­leagues and patients.

Dr Steve Allen: More and more we’re begin­ning to under­stand what goes wrong with peo­ple who have pain and more and more we can do some­thing to fix that.

Yorke: But first a word of cau­tion – that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­al, who’s the only per­son who knows you and your cir­cum­stances, and there­fore the appro­pri­ate action to take on your behalf.

Now, in the last edi­tion of Air­ing Pain, Lionel Kelle­way out­lined some of the basics of pain. Don’t for­get that you can still down­load that pro­gramme from, or obtain copies from Pain Con­cern. I’ll give you details on how to con­tact us lat­er in the pro­gramme. Ear­li­er in the month Pain Con­cern were for­tu­nate to receive a vis­it from Eliz­a­beth Car­ri­g­an. She’s founder and sec­re­tary of the Aus­tralian Pain Man­age­ment Asso­ci­a­tion. She was diag­nosed with chron­ic pain in 2008 fol­low­ing a spinal injury and the sub­se­quent oper­a­tions to try and repair the damage.

Eliz­a­beth Car­ri­g­an: While I was recov­er­ing from those oper­a­tions, the pain wasn’t improv­ing. I was hav­ing phys­io­ther­a­py and reha­bil­i­ta­tions and those sorts of things. And it was the phys­io­ther­a­pist that said to me, ‘Look, there could be nerve dam­age which is real­ly caus­ing you ongo­ing pain.’ And she referred me back to the sur­geon, who then referred me on to a pain specialist.

When I did, I got the appro­pri­ate med­ica­tion which real­ly took away the pain, maybe 30–40 per cent. So I wasn’t great, but it was a lot bet­ter than it had been. One of the oth­er things that he rec­om­mend­ed that I could do if I want­ed was to attend a pain man­age­ment pro­gramme, so I did. And that was when things changed around for me. So, it was learn­ing about self-man­age­ment prin­ci­ples; it was learn­ing about the nature of per­sis­tent pain; and it was then apply­ing that pain man­age­ment regime on a day-to-day basis. So I couldn’t let up, I had to do those things dai­ly and I still have to, so it’s still a dai­ly man­age­ment process for me.

Yorke: We’ll be fol­low­ing Eliz­a­beth Carrigan’s progress through­out the pro­gramme. But let’s explore in a lit­tle more depth the point she raised about under­stand­ing the nature of per­sis­tent pain, par­tic­u­lar­ly the type of pain that affects her and count­less oth­ers: neu­ro­path­ic pain.

Dr Steve Allen: Neu­ro­path­ic pain is nerve dam­age pain, things like shin­gles pain, dia­bet­ic pain; it’s a whole wide range of things.

Blair Smith: Oth­er types of pain are caused by dam­age in the tis­sues – the bone or the skin or the joint. In neu­ro­path­ic pain, there are abnor­mal sig­nals being sent through the ner­vous sys­tem up to the brain and it caus­es a par­tic­u­lar­ly unpleas­ant sen­sa­tion which is there all of the time.

Lionel Kelle­way: The best way I can describe it is that it’s like hav­ing my hand in a big pan of boil­ing water and just being unable to take it out.

Jan Bar­ton: It felt like some­body had stuck a blender in the back of his leg and turned it on.

Yorke: Speak­ing there were Jan Bar­ton, moth­er of Sam whose sto­ry you’ll be hear­ing in the future; broad­cast­er Lionel Kelle­way; Blair Smith, who is pro­fes­sor of Pri­ma­ry Care Med­i­cine at the Uni­ver­si­ty of Aberdeen; and Dr Steve Allen, a con­sul­tant in chron­ic pain man­age­ment at the Roy­al Berk­shire Hos­pi­tal in Reading.

I’m Rachel Yorke bring­ing you this edi­tion of Air­ing Pain. In these pro­grammes, we’ll be focus­ing on top­ics and ques­tions that you’ve raised with us. Dr Steve Allen men­tioned shin­gles in con­nec­tion with neu­ro­path­ic pain and that’s a recur­ring top­ic. One ques­tion­er has asked: ‘Ten weeks ago I devel­oped shin­gles. Although the rash has gone, I’m still in quite a lot of pain. How long will it last and what can I do?’ We phoned con­sul­tant anaes­thetist and pain spe­cial­ist Dr Mark Tur­tle on your behalf.

Mark Tur­tle: The pain that you’re expe­ri­enc­ing is nor­mal­ly referred to as post-her­pet­ic neu­ral­gia. Her­pes is the virus which caus­es shin­gles – it’s actu­al­ly relat­ed to the virus which caus­es chick­en­pox. That’s thought to be a recrude­s­cence – that is the virus that has lain dor­mant in the body after an attack of chick­en­pox sud­den­ly releas­es itself. What we think hap­pens is that the virus breaks out and you expe­ri­ence a rash, but the virus has a ten­den­cy to attach itself to the local nerves, and that’s the rea­son why the rash is localised to a par­tic­u­lar part of the body.

Ini­tial­ly, the pain – which some­times pre­cedes the rash – will be relat­ed to the acute activ­i­ty of the virus. But as that virus calms down again, pain con­tin­ues and one pre­sumes that that is because the nerve itself has been dam­aged. And so, the patient then expe­ri­ences a pain due to nerve dam­age, which is a type of neu­ro­path­ic pain. Now, the num­ber of peo­ple expe­ri­enc­ing this post-her­pet­ic neu­ral­gia declines quite sharply with time over the first six to eight weeks and there­after that improve­ment becomes very, very slow. So I’m afraid I’ve got to give a very neb­u­lous answer as to how long it will be, but there’s a jol­ly good chance at this stage that we’re going to have a prob­lem that could last for many months.

Now, the man­age­ment – well, it’s impor­tant to go and see your doc­tor about this and depend­ing on his knowl­edge or inter­ests, he may need to refer you on to some­body. But just very briefly, sim­ple painkillers – parac­eta­mol, anti-inflam­ma­to­ry drugs or opi­ate drugs – can be quite help­ful; local stim­u­la­tion tech­niques such as a TENS machine or a local mas­sage can be quite help­ful; there is a spe­cif­ic type of cream called ‘cap­saicin cream’ which can be very use­ful – it actu­al­ly is absorbed into the skin and the nerve cells and pass­es back along them to the spinal cord, where it’s said to have an inhibito­ry effect, but in the mean­time it can cause a lit­tle irri­ta­tion. If the per­son is expe­ri­enc­ing a great deal of sen­si­tiv­i­ty on the skin, there is a patch called ‘Ver­sa­tis’, which con­tains lig­no­caine, which is believed to absorb in the skin and counter some of the hyper­sen­si­tiv­i­ty of the nerves.

There is pos­si­bly a place for local anaes­thet­ic nerve blocks, which tem­porar­i­ly reduce sen­si­tiv­i­ty, and block­ing of par­tic­u­lar sorts of nerves called sym­pa­thet­ic nerves. This is quite a spe­cial­ist pro­ce­dure, although very eas­i­ly done by some­body who under­stands it and does them reg­u­lar­ly. It’s quite con­tro­ver­sial, but there is some evi­dence to sug­gest that if these are done with­in the first few months, they can be quite effective.

There’s anoth­er group of drugs which can be very effec­tive. First­ly, we have the tri­cyclic anti­de­pres­sants, such as amitripty­line, which can be very effec­tive on this type of neu­ro­path­ic pain and the sec­ond group is the antiepilep­tic anal­gesics. Two com­mon­ly used exam­ples are gabapentin and pre­ga­balin. These are par­tic­u­lar­ly use­ful if there is a lot of hyper­sen­si­tiv­i­ty or if there’s light­ning momen­tary shoot­ing pains. Final­ly, if the drug ther­a­py hasn’t real­ly proved to be of any val­ue, we real­ly look at tol­er­a­tion of the sit­u­a­tion and this involves a cog­ni­tive behav­iour­al-based pain man­age­ment programme.

Yorke: That’s Dr Mark Tur­tle answer­ing your ques­tions about shin­gles. And don’t for­get that med­ical advice spe­cif­ic to you can only be giv­en by your own GP or health pro­fes­sion­al. You’re lis­ten­ing to Air­ing Pain, with me, Rachel Yorke and we’re talk­ing about neu­ro­path­ic pain. Dr Mike Ser­pell is a con­sul­tant in Pain Med­i­cine at the West­ern Gen­er­al Infir­mary in Glasgow.

Dr Mike Ser­pell: Neu­ro­path­ic pain, by def­i­n­i­tion, is pain that’s caused by dam­age to the sen­so­ry ner­vous sys­tem. So that could be a periph­er­al nerve injury – such as a lac­er­a­tion at the wrist cut­ting the medi­an nerve – or it might be some­thing more prox­i­mal, what we call ‘cen­tral neu­ro­path­ic pain’ – such as occurs after spinal cord dam­age caus­ing para­ple­gia, or even after a stroke where you’re left with post-thal­a­m­ic pain syndrome.

The nerve dam­age may be cured, it depends on what the lesion was: if it was a lac­er­a­tion, for exam­ple, yes, that can heal com­plete­ly if the nerve is not dis­placed or it may need resu­tur­ing back into place by a sur­geon and the chances of recov­ery are very good. But, gen­er­al­ly, nerve injury can be pro­longed. Nerves aren’t very good at recov­ery and you can allow up to two years for the nerve to recov­er, but after two years you’re like­ly to get no fur­ther improve­ments. So up to a degree they are recov­er­able, but you real­ly need to ful­ly assess that and treat ear­ly on.

Car­ri­g­an: I remem­ber real­ly clear­ly that first appoint­ment with the neu­ro­sur­geon where I roused on a lit­tle bit and he said: ‘Look, real­ly you’d be in a much bet­ter posi­tion if you’d come and seen me when you could still walk, rather than just leav­ing your con­di­tion to go on so long and not get­ting appro­pri­ate med­ical treat­ment for it.’ And I guess that’s a lit­tle mes­sage I’d like to give oth­ers: if you’ve got excru­ci­at­ing pain – which is gen­er­al­ly a warn­ing sign in the body that something’s wrong – to real­ly act on it, promptly.

Yorke: Eliz­a­beth Car­ri­g­an. And with that in mind there are sev­er­al forms of man­age­ment for neu­ro­path­ic pain, but let’s start with con­ven­tion­al drug treat­ment. Dr Steve Allen of the Roy­al Berk­shire Hos­pi­tal in Reading:

Allen: For neu­ro­path­ic pain, nor­mal con­ven­tion­al anal­gesics are rarely of any ben­e­fit, because the physiology’s dif­fer­ent, the way in which the pain is pro­duced is dif­fer­ent. So we’ve got to use a whole wide range of dif­fer­ent drugs, and the posh term for that is co-anal­gesics. The two com­mon groups are the tri­cyclic anti­de­pres­sants, of which amitripty­line is prob­a­bly the most com­mon­ly used, and the antiepilep­tic drugs.

Now, why are we using anti­de­pres­sants for pain? Well, it’s because it’s all to do with the phys­i­ol­o­gy of your brain and the chem­i­cals in your brain that are involved. When you’re depressed, you don’t have enough in your brain of two chem­i­cals – one’s called sero­tonin; the oth­er one’s called nora­dren­a­lin – and the anti­de­pres­sants raise the lev­el of these in the brain and lift the mood and lift the depres­sion. The same two chem­i­cals involved with depres­sion are involved with the bits of your brain which deal with pain. So there’s a crossover effect for some patients. Not only are anti­de­pres­sants an anti­de­pres­sant, but they can help the pain as well. And inter­est­ing­ly we need prob­a­bly, what, a tenth, a fifth, of the anti­de­pres­sant dose to be anal­gesic. So yes, they’re anti­de­pres­sants, but they’re being used in a very, very dif­fer­ent way.

With neu­ro­path­ic pain, the pain’s being pro­duced by a sen­si­tive nerve, if you like. The sim­i­lar­i­ty with epilep­sy and why we use antiepilep­tic drugs, is that an epileptic’s got a sen­si­tive bit of brain which fires off when there’s no need to do so and stim­u­lates the brain to pro­duce a fit. So you damp down selec­tive­ly that very high­ly-sen­si­tive area with antiepilep­tic drugs. If your pain’s being pro­duced by a very sen­si­tive pain nerve, then you can use the same drugs to damp down that pain nerve and try and reduce the patient’s pain.

And there are a wide range of those again that we use. When I first start­ed, the com­mon ones were drugs called car­ba­mazepine, sodi­um val­proate and epil­im, which weren’t par­tic­u­lar­ly use­ful. The best thing that hap­pened to neu­ro­path­ic pain in the last ten years was a group of drugs – one’s called gabapentin and the oth­er one’s called pre­ga­balin. And it’s just to do with the way they work – they’re much bet­ter at what they do and they’re much bet­ter at con­trol­ling the neu­ro­path­ic pain.

Yorke: Dr Steve Allen. Now, one group of drugs often used to relieve acute pain is opi­oids but their use for neu­ro­path­ic pain is more con­tro­ver­sial. Dr Mike Serpell:

Ser­pell: Opi­oid med­ica­tions are painkillers derived from opi­um, which is the mor­phine base. So they’re a com­bi­na­tion of dif­fer­ent drugs. The most com­mon­ly used ones that peo­ple might be famil­iar with are the names of codeine and mor­phine. Some pains are more respon­sive to opi­oids; inflam­ma­to­ry pain is more respon­sive than neu­ro­path­ic pain, but even neu­ro­path­ic pain is respon­sive to a degree. Some types of neu­ro­path­ic pain are less respon­sive than oth­ers; for instance, cen­tral neu­ro­path­ic pain is much less respon­sive. So part­ly it’s the pain mod­el, but also part­ly it’s the patient.

There are cer­tain risks with every­thing in life. The risks with opi­oids are obvi­ous­ly the well-known phar­ma­co­log­i­cal side-effects of opi­oids which are well doc­u­ment­ed, things like con­sti­pa­tion, nau­sea, drowsi­ness. But there are oth­er side-effects which we’re not quite sure about in the long-term use, such as effects on the immune sys­tem, the hor­mon­al system…

There’s always the risk of addic­tion and we are very mind­ful of that. But I think there is a fun­da­men­tal mis­un­der­stand­ing about opi­oids. Step two opi­oids like codeine and dihy­drocodeine are prob­a­bly used far in excess, cer­tain­ly for chron­ic pain. I think they’re fine for acute pain, but for chron­ic pain, I think there needs to be a re-eval­u­a­tion of how we pre­scribe them. And the new British Pain Soci­ety guide­lines go some way to doing that. But we need to keep the work up, keep on research­ing it and keep on improv­ing the edu­ca­tion and the mon­i­tor­ing of how we pre­scribe opi­oids to make sure that we are con­tin­u­al­ly get­ting feed­back and improv­ing the way that they are administered.

But opi­oids are one form of anal­gesic – there are many oth­er types of anal­gesics and gen­er­al­ly opi­oids are used as one of the last types of anal­gesics because of the very issues of them. And so there are plen­ty of oth­er anal­gesics. And it’s our job real­ly as a pain clin­ic ser­vice to make sure that patients are exposed to every­thing appro­pri­ate before they come to opi­oids, unless there’s a par­tic­u­lar rea­son for opi­oids being used very ear­ly on.

Allen: It’s some­times actu­al­ly very dif­fi­cult to know which is the best treat­ment and cer­tain­ly there are no hard and fast rules. Yes, per­haps for neu­ro­path­ic pain, tri­cyclic anti­de­pres­sants and anti-epilep­tics would be the first line drug of choice, but you can’t always say this is the best treat­ment for any par­tic­u­lar con­di­tion. Now, there are argu­ments between experts about what you should do first and there are many of my col­leagues who like inject­ing, there are many of us who find a dif­fer­ent approach and we use drug treat­ments first.

My view­point is that if we’re going to try and treat chron­ic pain bet­ter, we have to do that ear­li­er and bet­ter in the com­mu­ni­ty. Now that means, real­ly, drugs have to be – phar­ma­ceu­ti­cals have to be – your first line treat­ment, and psy­chol­o­gy; because you can’t do com­plex injec­tions in gen­er­al prac­tice. Now, I’m not say­ing drug treat­ment helps every­body, but it will help quite a large num­ber of peo­ple who are under­treat­ed. If you can treat them in the com­mu­ni­ty, pos­si­bly with drug ther­a­py first, then I think you’re going to advance things more quickly.

Car­ri­g­an: Most peo­ple I know with chron­ic pain need some degree of med­ica­tion or there might be med­ical pro­ce­dures, but there’s a whole oth­er sort of role that I think you can take on your­self. And it is about man­ag­ing a long term con­di­tion and learn­ing to do that takes time and patience and also edu­ca­tion. So if you have the oppor­tu­ni­ty to do a pain man­age­ment pro­gramme, I’d strong­ly advise any­one lis­ten­ing to do that. It is dif­fi­cult on a dai­ly basis to get off to those pro­grammes, but you’ll meet oth­er peo­ple with sim­i­lar long-term painful con­di­tions and you can get some strength from oth­er people.

You can also learn lots and lots of skills. So those skills will be about relax­ation, they’ll be about pac­ing, they’ll be about plan­ning ahead and get­ting to know what pain is all about and how it’s changed your cen­tral ner­vous system.

And it sounds a bit extra­or­di­nary that your body can do that. But when it does do that, you need to do things to calm down and qui­eten that cen­tral ner­vous sys­tem. So at the end of the day, you’re telling it that real­ly there’s noth­ing for it to get excit­ed and wor­ried about. It’s a bit like hav­ing a fire alarm going off in your body even though there’s no fire – the smoke detec­tor, the alarm, just won’t stop ring­ing. So you’ve got to do things to tell your body that there isn’t a fire there and qui­eten it down.

And you can have a good qual­i­ty of life even though you’ve got pain and you can get that pain down to five, or below, out of ten, I think, with self-man­age­ment tech­niques and with med­ical intervention.

Yorke: That was Eliz­a­beth Car­ri­g­an of the Aus­tralian Pain Man­age­ment Asso­ci­a­tion. This edi­tion of Air­ing Pain is pre­sent­ed by me, Rachel Yorke. And we’ll stay with the sub­ject of neu­ro­path­ic pain, but move on to how it affects some can­cer suf­fer­ers. Paul Far­quhar-Smith is a con­sul­tant at the Roy­al Mars­den Hos­pi­tal in Lon­don. He was involved in writ­ing the British Can­cer Pain Guide­lines, which is for all health
pro­fes­sion­als, and there’s also a ver­sion for patients.

Dr Paul Far­quhar-Smith: It’s esti­mat­ed in stud­ies… it’s been shown that after breast can­cer surgery, up to about 50 per cent of women get a chron­ic post-surgery pain. And when you imag­ine the num­ber of patients hav­ing breast can­cer surgery, this is a large prob­lem. And, indeed, I would say about half of my patients I see in the clin­ic have this sort of problem.

There is also the chemother­a­py-induced neu­ro­path­ic pain, and that varies very much depend­ing on what sort of chemother­a­py agent you had. There’s some that you’re very unlike­ly to get nerve pain from, and oth­ers that you are quite like­ly to get nerve pain from. The one I’m think­ing about is the so-called ‘Vel­cade’, which is the treat­ment for myelo­ma, and that has a pret­ty high instance – about 35 per cent of peo­ple get sig­nif­i­cant nerve pain, or nerve prob­lem, that may
include pain after their treatment.

Yorke: Dr Julie Bruce is a senior research fel­low at the Uni­ver­si­ty of Aberdeen. She has a par­tic­u­lar inter­est in the risk fac­tors for chron­ic pain fol­low­ing surgery. One study focused on women who had under­gone surgery for pri­ma­ry breast cancer.

Dr Julie Bruce: Three years after the oper­a­tion we found that 40 per cent of women report­ed chron­ic post-sur­gi­cal pain. Then we fol­lowed up this cohort of women nine years after their orig­i­nal oper­a­tion and we found that of those who had pain, half of them still had symp­toms nine years post-oper­a­tive­ly. And for the oth­er half, they had got bet­ter. We were able to look at qual­i­ty of life, and com­pare qual­i­ty of life scores, and we found that, unsur­pris­ing­ly, the women whose pain had resolved, their qual­i­ty of life had improved, where­as for the ladies who still had the pain, their qual­i­ty of life scores were low­er than you would expect.

Far­quhar-Smith: These women who come for exam­ple with the post-breast can­cer surgery pain, they often think that it’s a recur­rence of the dis­ease because they don’t under­stand how they can have pain in an area that’s com­plete­ly healed up and there’s no rea­son for them to have pain. We know that there’s a good rea­son why these peo­ple have pain, because of the alter­ations in the nerves that have been
inter­rupt­ed and both­ered by the operation.

So it’s a type of nerve dam­age – the small nerves around the area that’s been affect­ed by the surgery. And these nerves get upset and think they have got pain when there’s no rea­son to have pain. And these nerves can car­ry on feel­ing like this for months or even some­times years after the surgery.

There are quite a few effec­tive treat­ments that can address this, and these are usu­al­ly the same sorts of treat­ments as we use for oth­er types of nerve pain, such as the anti­de­pres­sants – not being used as an anti­de­pres­sant but as a spe­cif­ic anti-nerve pain med­i­cine – and anti­con­vul­sants – and, again, not being used because we think anyone’s got epilep­sy, but because they try and calm this over-activ­i­ty of these both­ered and dam­aged nerves.

Bruce: There are a num­ber of things that can hap­pen dur­ing an oper­a­tion so that nerves can be dam­aged or they can be cut and often this is an impor­tant part of the oper­a­tive process. So, for exam­ple, if sur­geons are try­ing to remove the tumour, they have to ensure that the whole tumour has been removed and this may involve dis­sec­tion or cut­ting of the major nerves and this is essen­tial to achieve full recovery.

But the unusu­al thing is that, even though a group of patients are sub­ject­ed to the same pro­ce­dure or broad­ly sim­i­lar pro­ce­dures, we know that for a third of patients that they have symp­toms post-oper­a­tive­ly. Yet for the oth­er two-thirds, they recov­er with­out any prob­lems. So we have to learn more about why these dif­fer­ences occur. So, real­ly, the research is try­ing to focus on being able to pre­dict who might be like­ly to have a poor­er out­come, to see whether we can help try and pre­vent this con­di­tion occurring.

Far­quhar-Smith: The treat­ments for can­cer pain are very var­ied and we have what we call a mul­ti-dis­ci­pli­nary, mul­ti-fac­to­r­i­al approach. So, the phar­ma­co­log­i­cal side, the med­i­cines and tablets, is only one ele­ment of the whole pic­ture, includ­ing psy­cho­log­i­cal sup­port, phys­io­ther­a­py, oper­a­tional health, pal­lia­tive care input. And all these things act togeth­er to try and address the pain, because the pain is not just the elec­tri­cal con­duc­tion down nerves that cause the brain to recog­nise pain – the pain is a human cog­ni­tive emo­tion­al expe­ri­ence and we have to address that in the treat­ment of it.

Yorke: Paul Far­quhar-Smith. Before him we had Julie Bruce.

Back to our mes­sage board and one ques­tion we get asked fre­quent­ly – and one that has no doubt been asked by the 7.8 mil­lion peo­ple with pain – is quite sim­ple: ‘where can I go for help?’ Answer­ing your ques­tions today is pres­i­dent of the Welsh Pain Soci­ety, Dr Mark Turtle.

Tur­tle: The most impor­tant con­tact point is your local gen­er­al prac­ti­tion­er. He is the key to it. He can give you a fair amount of sup­port, he can tell you what ser­vices there are local­ly to access once it is estab­lished that there’s noth­ing impor­tant that we need to miss. And, for exam­ple, if you want to go to the pain clin­ic or some oth­er hos­pi­tal or facil­i­ty, he can arrange access.

Most pain clin­ics will take peo­ple who are referred from their own gen­er­al prac­ti­tion­er. There are a few that will take peo­ple off the street, but not all that many. There are also a few that will only take peo­ple from oth­er spe­cial­ists with­in the hos­pi­tal. If you do have any dif­fi­cul­ty, it’s worth­while phon­ing, for exam­ple, NHS (Nation­al Health Ser­vice) Direct, who can tell you what facil­i­ties there are local­ly, and if they are able to actu­al­ly give details of the local pain clin­ic, you can go back to your gen­er­al prac­ti­tion­er and say: ‘This is the local pain clin­ic, to which you, my gen­er­al prac­ti­tion­er, have access. Please can you make a referral?’

Yorke: That was Dr Mark Tur­tle, one of our pan­el of experts who will answer your ques­tions. So please do con­tact us at Pain Con­cern via our web­site,, Face­book, twit­ter, email or good old-fash­ioned pen and paper.

And, final­ly, just to prove that you can have a ful­fill­ing life, even with chron­ic pain, we’ve been fol­low­ing the progress of Eliz­a­beth Car­ri­g­an – from debil­i­tat­ing pain two years ago to her arrival this sum­mer at Pain Concern’s offices near Edin­burgh. So has her pain-man­age­ment strat­e­gy been successful?

Car­ri­g­an: Well, I’d like to think that, giv­en I’ve trav­elled from Bris­bane in Aus­tralia to Edin­burgh in Scot­land that it’s been rel­a­tive­ly suc­cess­ful, because one year ago even, I wouldn’t have con­tem­plat­ed a trip like this. It was just not on my hori­zon. I would have thought it was far too dif­fi­cult a chal­lenge and if I’d set it as a goal, I would have thought it was quite unre­al­is­tic. So, in a year, I have made quite dra­mat­ic improvement.

And it’s a dai­ly chal­lenge and it’s a dai­ly man­age­ment process. So, for me, that starts as ear­ly as, you know, 6–6:30. So I wake up and I actu­al­ly take med­ica­tion then. The morn­ings are actu­al­ly very dif­fi­cult for me; it’s when I have sort of most pain, so I don’t move until the med­ica­tion has real­ly tak­en effect. But dur­ing that time – about half an hour lat­er – I’ll start doing some stretch­ing exer­cis­es and then I’ll plan the day.

And gen­er­al­ly I plan it so that I’m stay­ing with­in my phys­i­cal lim­i­ta­tions. I’ll also make sure that I’ve set aside some time, gen­er­al­ly between five and six, when I rest: so I’ll do some relax­ation and again some stretch­ing exer­cis­es dur­ing that time. I make sure I eat quite health­ily and gen­er­al­ly stay active and fit. And then at night-time I take the med­ica­tion again so I can get up and get din­ner ready and do all those sort of things that we’ve got to do in the evening because life doesn’t stop.

But I always plan some­thing nice for myself at the end of that day too. So I don’t know whether this is going to help any­body else, but I used to wear lots of browns and greys and blacks and things, but I just find since hav­ing chron­ic and per­sis­tent pain, just being able to dress up in brighter colours real­ly helps as well.

Yorke: Eliz­a­beth Car­ri­g­an, founder and sec­re­tary of the Aus­tralian Pain Man­age­ment Asso­ci­a­tion. This edi­tion of Air­ing Pain has been pre­sent­ed by me, Rachel Yorke, and I’d like to end with two obser­va­tions about pain man­age­ment from Eliz­a­beth Car­ri­g­an and Dr Steve Allen.

Allen: Very often we can’t reduce the actu­al inten­si­ty of a patient’s pain, but what we can do is help them to cope bet­ter. Now that may be me on my own talk­ing to the patient, it may be through more for­mal psy­chol­o­gy, pain man­age­ment or whatever.

So I think what we should nev­er do is just take the reduc­tion in pain as itself to be the only sign of suc­cess. It’s all about what we call ‘qual­i­ty of life’. And to be hon­est when we used to go to inter­na­tion­al meet­ings ten years ago and you said the words ‘qual­i­ty of life’, peo­ple laughed at you. And now they don’t. And that’s been a huge change in the last ten years – that we need to look at the patient as a human being and as a whole.

Car­ri­g­an: The qual­i­ty of life can still be very high. So you can still do fab­u­lous things like go on hol­i­day over­seas, you can still do things that ben­e­fit the com­mu­ni­ty. So your work life might be very dif­fer­ent, but it will still be a pos­i­tive life.


  • Dr Steve Allen, Neu­ro­path­ic Pain
  • Kiera Jones, Liv­ing with Pain
  • Eliz­a­beth Car­ri­g­an, Liv­ing with Pain
  • Pro­fes­sor Blair Smith, Neu­ro­path­ic Pain
  • Lionel Kelle­way, Liv­ing with Pain
  • Jan Bar­ton, Grow­ing Up in Pain
  • Dr Mick Ser­pell, Neu­ro­path­ic Pain
  • Dr Paul Far­quhar-Smith, Post-Oper­a­tive Pain
  • Dr Julie Bruce, Post-Oper­a­tive Pain.


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