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Transcript – Programme 115: Neuropathic Pain 1 of 2: Targeted pain management programmes

Explor­ing neu­ro­path­ic pain and the var­i­ous ways it can be managed

To lis­ten to this pro­gramme, please click 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.


  • 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.

More Infor­ma­tion: