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Transcript – Programme 29: Fibromyalgia

Liv­ing with fibromyal­gia, and the med­ical research offer­ing hope for the future

To lis­ten to this pro­gramme, please click here.

Fibromyal­gia affects an esti­mat­ed 2.7 mil­lion peo­ple in the UK, yet it is a con­di­tion which is poor­ly under­stood leav­ing the peo­ple with it often fac­ing igno­rance and prej­u­dice. Pre­sen­ter Paul Evans, who has fibromyal­gia him­self, talks with Lexy Bar­ber about her expe­ri­ences of cop­ing with it. We also hear form Pro­fes­sor Ernest Choy and Pro­fes­sor Dwight Moulin about advances in med­ical knowl­edge of the con­di­tion and pos­si­ble ways of man­ag­ing symptoms.

Issues cov­ered in this pro­gramme include: Fibromyal­gia, med­ical research, psy­chol­o­gy, chem­i­cal imbal­ance, mis­con­cep­tions, address­ing mis­in­for­ma­tion, mus­cle pain, fatigue, mem­o­ry, headaches, migraines, back pain, dizzi­ness, heart pal­pi­ta­tions, men­tal ill­ness, irri­ta­ble bow­el syn­drome, hyper­sen­si­tiv­i­ty, exer­cise, video games, Nin­ten­do Wii, restora­tive sleep and brain signals.

Paul Evans: Hel­lo, I’m Paul Evans and wel­come to Air­ing Pain. A pro­gramme brought to you by Pain Con­cern; the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us who live with pain. This edi­tion is made pos­si­ble by Pain Concern’s Sup­port­ers and Friends. More infor­ma­tion on fundrais­ing efforts is avail­able on our Just Giv­ing page at painconcern.org.uk.

Lexy Bar­ber: What peo­ple think is just a gen­er­al, minor knock when you are stand­ing shoul­der to shoul­der with peo­ple, is very painful when they are… actu­al­ly, it feels like they are just punch­ing you in the arm repeatedly.

Pro­fes­sor Dwight Moulin: It is not pri­mar­i­ly a psy­cho­log­i­cal dis­or­der, it is a chem­i­cal imbal­ance that caus­es a whole mul­ti­tude of symp­toms, but the pri­ma­ry symp­tom that caus­es the great­est dis­abil­i­ty is chron­ic pain.

Evans: Why should we on Air­ing Pain be even dis­cussing the valid­i­ty of a con­di­tion that affects an esti­mate of up to 2.7 mil­lion peo­ple in the UK? Well, I have fibromyal­gia and I can tell you it is very real, yet, for years the con­di­tion was con­sid­ered by the pub­lic, fed by an igno­rant press and, I have to say some of the med­ical pro­fes­sion, as a psy­cho­log­i­cal dis­or­der – some­thing in the imagination.

Even though fibromyal­gia is now recog­nised by the World Health Organ­i­sa­tion and the NHS (Nation­al Health Ser­vice), the spread­ing of mis­in­for­ma­tion per­sists. Only recent­ly, a colum­nist in the UK tabloid press wrote that his new year’s res­o­lu­tion for 2012 was to become dis­abled, noth­ing too seri­ous, maybe just a bit of bad luck or one of those new­ly invent­ed ill­ness­es, which make you a bit peeky for decades – fibromyal­gia or ME. Now, that is not only offen­sive and dam­ag­ing to peo­ple who have these con­di­tions, but to peo­ple with all disabilities.

So let’s put the record straight – what is fibromyal­gia? Ernest Choy is Pro­fes­sor of Rheuma­tol­ogy at Cardiff Uni­ver­si­ty, he is also on the Med­ical Advi­so­ry Board of Fibromyal­gia Asso­ci­a­tion UK.

Pro­fes­sor Ernest Choy: Fibromyal­gia in sim­ple words means pain in the tis­sue and, in the main, a patient with fibromyal­gia will have pain through­out their body in dif­fer­ent tis­sues. It is very com­mon – it affects some­thing like two per cent of the pop­u­la­tion. It tends to be more com­mon in women that in men. It can affect chil­dren as well as adults. The most com­mon age of onset is round about the 40s and 50s. It tends to last for a long time. One of the most frus­trat­ing aspects of the ill­ness, is that many patients do not have any out­ward signs of a phys­i­cal ill­ness, although they feel ter­ri­ble in them­selves, because they are in pain and often their friends, rel­a­tives, their col­leagues at work do not quite fath­om what the prob­lem is.

But we have start­ed to under­stand the con­di­tion a lot more over the recent years. First of all, the con­di­tion is not what I call homoge­nous – it means that there are dif­fer­ent kinds of fibromyal­gia. You can have dif­fer­ent events and ill­ness­es and fac­tors can pre­cip­i­tate and bring on fibromyal­gia, so in many ways, we do not always treat the patient in the same way – it real­ly depends on what we think are the main fac­tors that dri­ve or cause fibromyal­gia in the indi­vid­ual patients. But, in every patient with fibromyal­gia, what they do suf­fer from, is pain through­out the body – it may vary in inten­si­ty from day to day and it may move from one place to anoth­er but it is uncom­mon for the patient not to be hav­ing pain some­where in the body at some point.

Evans: Pro­fes­sor Ernest Choy. Now it is always good to talk with oth­ers who share your con­di­tion, to share notes and to com­pare cop­ing strate­gies, so recent­ly I met Lexy Bar­ber and this is how it affects her:

Bar­ber: It depends on whether it is a good day or a bad day and they tend to come in series – so it is more like a good week or a bad week. A bad week, a very bad week can be, par­tic­u­lar­ly if I have gone down with a cold or some­thing and I am recov­er­ing from it – then my mus­cles tend to go into flare and it is very, very ten­der and sore, so things like com­mut­ing on real­ly packed trains is not very com­fort­able at all because what peo­ple think is just a gen­er­al, minor knock when you are stand­ing shoul­der to shoul­der with peo­ple, is very painful when they are… actu­al­ly, it feels like they are just punch­ing you in the arm repeat­ed­ly. They obvi­ous­ly don’t realise that you are in pain and you can’t just shout out at them to not, because of the sit­u­a­tion you are in – that can be real­ly hard. On a good day, it doesn’t mat­ter quite so much, it is always there, it is always a bit painful – some­times you don’t know it is there, until some­one bumps into you or you acci­den­tal­ly walk into the door frame, as I have a ten­den­cy of doing.

Choy: Pain is one of the most com­mon and I would say, uni­ver­sal symp­tom, but there are lots of symp­toms asso­ci­at­ed with fibromyal­gia – fatigue, tired­ness is very com­mon; non-refreshed sleep – so peo­ple go to sleep, they may sleep for hours, but when they wake up in the morn­ing, nev­er feel that they had a good night’s sleep. ‘Fibro fog’ also means that peo­ple also have prob­lems with short term mem­o­ry, they don’t seem to be able to think clear­ly, peo­ple may have headaches, migraines, back pain, dizzi­ness, some­times even pal­pa­tions, anx­i­ety, depres­sion – all those are very com­mon symp­toms of fibromyalgia.

Evans: … and irri­ta­ble bow­el syndrome?

Choy: Irri­ta­ble bow­el syn­drome is a com­mon occur­rence in patients with fibromyal­gia, yes.

Evans: Now that is a lot of symp­toms, so what is caus­ing this?

Choy: For a while, peo­ple don’t under­stand why a fibromyal­gia patient has this whole range of symp­toms but it is now clear that one of the issues, in us cop­ing with pain, is that all of us have an intrin­sic mech­a­nism in the brain that con­trols pain. So when we expe­ri­ence pain, we will nat­u­ral­ly have a reac­tion to the pain because it stress­es us, makes us depressed, it makes us upset, irri­ta­ble. Nor­mal­ly, the body actu­al­ly has a way of sup­press­ing the sever­i­ty of the pain, to make it cope-able and man­age the pain – but what is clear, is that in a patient with fibromyal­gia, some of these intrin­sic mech­a­nisms are not work­ing very well – so they are less able to man­age to cope with the pain, so they get quite frus­trat­ed, they get quite tired with the pain and not sur­pris­ing­ly because they can­not con­trol the pain, they get more irri­ta­ble, they get more anx­ious, they get more depression.

Anoth­er aspect of it is, that because the pain is induc­ing stress which is the nor­mal reac­tion of pain – the stress also makes the whole body more sen­si­tive because actu­al­ly, one of the nor­mal con­se­quences of stress is to bring down the nor­mal ther­mo­stat of the body, it is like a cat hav­ing his hair on end when he’s stressed, that’s how he responds. In a patient with fibromyal­gia, the whole sen­so­ry thresh­old of the per­son gets low­ered down, so they just become far more sen­si­tive to where there is noise, where there is light, where there is move­ment in the bow­el – the whole per­son becomes on edge. I think then you can start to under­stand why they have this whole range of symp­toms just from a sin­gle illness.

Evans: My wife describes it as when I get like that – she says ‘you need to be turned down’ and I say ‘my ther­mo­stat is not working’.

Choy: That is exact­ly the rea­son why the whole body seems to be on edge and in many ways, our way of man­ag­ing the ill­ness is by [find­ing] how to turn down that thermostat.

Evans: Ernest Choy. Now before that offen­sive arti­cle that I referred to ear­li­er, was writ­ten, Pro­fes­sor Dwight Moulin, a neu­rol­o­gist at the Uni­ver­si­ty of West­ern Ontario in Cana­da chaired a ses­sion at the British Pain Society’s Annu­al Sci­en­tif­ic Meet­ing in Edin­burgh – it was under the head­ing ‘Fibromyal­gia – is it a cen­tral neu­ro­path­ic pain or a con­di­tion of psy­cho­log­i­cal distress?’

Pro­fes­sor Dwight Moulin: There has been a per­cep­tion that fibromyal­gia is a pri­ma­ry prob­lem of psy­cho­log­i­cal dis­tress and that’s been a mind­set that goes back decades. Prob­a­bly, where we are now with fibromyal­gia is the way we were maybe a hun­dred years ago with epilep­sy or, say, migraine or schiz­o­phre­nia, because a hun­dred years ago – if you had seizures, you might be in an insane asy­lum and nobody under­stood migraine either. And you can look at the brain in indi­vid­u­als with migraine or pri­ma­ry seizure dis­or­der and they look com­plete­ly nor­mal and we know now that these are con­di­tions or so called chem­i­cal imbal­ance, so there is a chem­i­cal imbal­ance in the brain that can cause peo­ple to have ter­ri­ble headaches, cause peo­ple to have con­vul­sions, but you can’t see it look­ing at the tis­sue under the microscope.

And it is turn­ing out now that fibromyal­gia is anoth­er con­di­tion of chem­i­cal imbal­ance: it is not pri­mar­i­ly a psy­cho­log­i­cal dis­or­der; it is a chem­i­cal imbal­ance that caus­es a whole mul­ti­tude of symp­toms. And one of the effects of this chem­i­cal imbal­ance can be to pro­duce psy­cho­log­i­cal dis­tress, includ­ing anx­i­ety and depres­sion – and these are comor­bidi­ties – but the pri­ma­ry symp­tom in fibromyal­gia that caus­es the great­est dis­abil­i­ty is chron­ic pain and that is part of this chem­i­cal imbal­ance. And in the past ten or twen­ty years, a lot of work has been done to show and val­i­date the fact that this chem­i­cal imbal­ance is respon­si­ble for many of the symp­toms in fibromyal­gia includ­ing pain and an inabil­i­ty to sleep and the sec­ondary anx­i­ety and depression.

Evans: Let’s go back on that, chem­i­cal imbal­ance – what chem­i­cals are we talk­ing about, what should they be doing and how are they out of balance?

Moulin: The cen­tral ner­vous sys­tem is an inter­play between fac­tors that excite neu­rons and oth­ers that inhib­it neu­rons. And there are neu­rons in the spinal cord that are respon­si­ble for trans­mis­sion of pain impuls­es. Nor­mal­ly if you stub your toe, or put your hand on a hot plate, you expe­ri­ence pain and that is impor­tant, because that alerts us to injury and so we with­draw right away and we do not hurt our­selves. In fact, there is a very rare con­di­tion where peo­ple lack aware­ness of pain and by the time they are teenagers, their hands and feet are muti­lat­ed because they do not have this pro­tec­tive reflex. So, that is good, that is nor­mal, and that is phys­i­o­log­ic pain that pro­tects us from injury.

But there are con­di­tions where a chem­i­cal imbal­ance occurs, where cer­tain chem­i­cals are not present in the cen­tral ner­vous sys­tem at lev­els that they should be to nor­mal­ly inhib­it impuls­es. And the two pri­ma­ry chem­i­cals that we are talk­ing about in the cen­tral ner­vous sys­tem are: sero­tonin and nora­dren­a­lin. Lev­els of these chem­i­cals in the cen­tral ner­vous sys­tem can blunt the pain response and pre­vent us from tip­ping over into a state of chron­ic pain.

We know now from many basic sci­ence stud­ies, that indi­vid­u­als with fibromyal­gia, are lack­ing in lev­els of these two chem­i­cals, to the point where things that nor­mal­ly should just be pres­sure or light touch are actu­al­ly expe­ri­enced as pain, because they do not have the nor­mal fil­ter mech­a­nism in the cen­tral ner­vous sys­tem to appre­ci­ate it just as light touch it actu­al­ly comes through as a painful impulse. The clin­i­cal side of this, in terms of the bed­side, is that there are drugs avail­able, essen­tial­ly they are anti­de­pres­sants, but they are anti­de­pres­sants that work as painkillers, that ele­vate lev­els of these chem­i­cals that help restore that balance.

Evans: Well, I am such a hap­py man, I can take one of these anti­de­pres­sants, if you like, and I will be cured?

Moulin: I wish that were true. It is not a cure, but it helps to restore that bal­ance, not in every patient, but in a sig­nif­i­cant number.

Evans: How do you diag­nose it?

Choy: We have cer­tain cri­te­ria, we base it on the symp­toms of the patient, typ­i­cal­ly a patient with fibromyal­gia will have a very char­ac­ter­is­tic area of ten­der­ness in the body, so if you press on cer­tain areas they jump and scream a lit­tle bit, because they are increas­ing­ly sen­si­tive to pres­sure, so light pres­sure caus­es a lot more pain than it should. We do blood tests, not because they are tests that will con­firm their fibromyal­gia, but, in the main, try­ing to exclude oth­er pos­si­ble caus­es of the pain. So it is not uncom­mon for us to do tests, in effect the tests are nor­mal, they are real­ly to exclude oth­er pos­si­ble caus­es of pain.

Moulin: There is no clin­i­cal diag­nos­tic test. There are research stud­ies that are not nor­mal­ly avail­able to help val­i­date fibromyal­gia. One of the exci­ta­to­ry chem­i­cals that is respon­si­ble for pain is some­thing called ‘sub­stance P’ ­– I guess maybe ‘P’ stands for pain, but I am not sure – but sub­stance P is an impor­tant fac­tor, in the gen­er­a­tion of pain. If you do not have these inhibito­ry chem­i­cals, lev­els of sub­stance P are ele­vat­ed. One of the most val­i­dat­ing aspects of fibromyal­gia is that indi­vid­u­als that have this con­di­tion, if they see a sur­face sam­ple through a lum­ber punc­ture, lev­els of sub­stance P in patients with fibromyal­gia are on aver­age three times high­er than they are in nor­mal indi­vid­u­als. That is a research tool but it is a test that helps to val­i­date this chem­i­cal imbalance.

Evans: Just tell me if I am right or wrong – sub­stance P is a chem­i­cal that is present (it is always present) but at high lev­els, it is present when one is in pain?

Moulin: Sub­stance P is a chem­i­cal that excites neu­rons that are respon­si­ble for gen­er­at­ing nerve impuls­es. So, ele­vat­ed lev­els of sub­stance P means more pain, if you inhib­it sub­stance P you can decrease the amount of pain that a per­son appre­ci­ates. And many of the anal­gesics that we have includ­ing so-called nar­cotics or opi­oids – what we refer to as mor­phine-like drugs – they inhib­it the release of sub­stance P and that is a major mech­a­nism pro­vid­ing pain relief because they decrease the release of this sub­stance that excites pain neurons.

Evans: So, here is the bil­lion Cana­di­an dol­lar ques­tion… What caus­es it?

Moulin: I do not think any­body knows what caus­es fibromyal­gia, but indi­vid­u­als with fibromyal­gia they are pain-prone indi­vid­u­als. So patients with fibromyal­gia have oth­er man­i­fes­ta­tions of this chem­i­cal imbal­ance: they have a high­er inci­dence of migraine; they have a high­er inci­dence of irri­ta­ble bow­el syn­drome; they have a high­er inci­dence of depres­sion… It is more com­mon in women, as many pain con­di­tions are, and often it will man­i­fest itself in women in their thir­ties and forties.

These are indi­vid­u­als who prob­a­bly are pre­dis­posed to this con­di­tion because they have inher­it­ed a defi­cien­cy in these two chem­i­cals – sero­tonin and nora­dren­a­lin – and then they will have an event like a whiplash injury and it just tips them over the edge. And that is enough to cause the symp­tom to man­i­fest. A typ­i­cal sto­ry is some­body will have a soft tis­sue injury like whiplash, then they will have chron­ic neck pain and it spreads to their whole body and about 50 per cent of patients with fibromyal­gia start­ed with a spe­cif­ic injury. These are indi­vid­u­als who prob­a­bly have innate… they are born with this chem­i­cal imbal­ance and over the course of a life­time of life events it man­i­fests itself, not just with this gen­er­alised pain, but these are indi­vid­u­als who have oth­er pain con­di­tions as well like migraine and irri­ta­ble bow­el syn­drome. It is kind of a nasty package.

Choy: Because of these dif­fer­ent fac­tors, one of the first things that we try to do is to under­stand ‘what are the char­ac­ter­is­tics of the patient?’ and ‘what are the fac­tors that may well be relat­ed to their spe­cif­ic fibromyal­gia?’ Just to give you an exam­ple, some­body who is a bit over­weight, who sleeps very poor­ly, snores very heav­i­ly, may well be wak­ing up very fre­quent­ly at night and that, trig­gered off by chest infec­tions, starts to devel­op fibromyal­gia. So in those patients we try to make sure that their sleep qual­i­ty is improved. Alter­na­tive­ly, in some patients if they have a very severe, uncon­trolled depres­sion, that is not well man­aged, then we will man­age the depres­sion. So I think that in indi­vid­ual patients there are dif­fer­ent aspects that we try to address.

Evans: What I find very dif­fi­cult, as some­body who has fibromyal­gia, is explain­ing to some­body else how I feel. I could just say ‘I feel rub­bish’ and that is the end of it. If I was sad enough to want some­body else to expe­ri­ence this, just briefly, how would I do it?

Moulin: One of the chal­lenges of fibromyal­gia is that peo­ple can feel hor­ri­ble: they have chron­ic pain, fatigue and depres­sion, but it is all sub­jec­tive, there is noth­ing… you can look at a per­son who has fibromyal­gia and they do not look any dif­fer­ent than any­body else, so it is a very sub­jec­tive con­di­tion. But indi­vid­u­als who do not have fibromyal­gia, if they are sleep-deprived because they are shift work­ers, or they have anoth­er con­di­tion, things called sleep apnoea, oth­er ill­ness­es that deprive indi­vid­u­als of sleep or some­body who just… There have been exper­i­ments done where indi­vid­u­als as exper­i­men­tal sub­jects have been sleep deprived for days on end. Sleep depri­va­tion in itself will pro­duce chron­ic pain, these indi­vid­u­als are pain-prone, indi­vid­u­als, they become obvi­ous­ly fatigued, they devel­op sec­ondary depres­sion and they devel­op chron­ic pain. It prob­a­bly leads to a chem­i­cal imbal­ance just with the fact that they are not get­ting nor­mal restora­tive sleep.

Bar­ber: I describe it as crash­ing fatigue. You could be get­ting through the day and sud­den­ly you will just think ‘I need to sleep, I do not care if it is on my key­board I have to sleep’, which is quite dif­fi­cult to cope with when you hold down a full time job.

Evans: That word ‘fatigue’. I find that peo­ple do not under­stand the word ‘fatigue’, they think of it as tired­ness. Now I describe fatigue as absolute exhaus­tion, being run over by a bulldozer.

Bar­ber: Yes, that is def­i­nite­ly it. You can sleep for 12 hours and wake up and think you have not slept at all and feel like you need anoth­er 12 hours sleep. You stop being able to form sen­tences properly…

Evans: I noticed!

Bar­ber: [laughs] You have not seen me on a bad day! It is not even form­ing sen­tences – I can often switch off mid­way through a sen­tence, think­ing I have com­plet­ed it and won­der why peo­ple are look­ing at me expec­tant­ly because they are wait­ing for the rest of the sentence.

Evans: Do you have those con­ver­sa­tions with peo­ple, where you are in the mid­dle of some­thing and you stop, pause and say ‘What was I talk­ing about?’

Bar­ber: All the time! I use the phrase ‘My words have fall­en out of my head!’ because it describes what has hap­pened. It is not just a blank mind, you could almost hear the words just tum­bling to the floor next to you and you are just scram­bling to find what you were say­ing, you com­plete­ly lose your thread of con­ver­sa­tion and then it is real­ly embar­rass­ing hav­ing to ask for prompts as well. I am lucky enough in that peo­ple who know me are now very famil­iar with this trait of mine and they will jump in before that hap­pens. If they see me reach­ing for a word they are not afraid to jump in and tell me the word that I was look­ing for. That keeps me on my train of thought a lot quick­er, than hav­ing to pause mid­way through a sentence.

Evans: And what about this thing we call ‘fibro fog’?

Bar­ber: Fibro fog, it can be a lit­tle bit like, if you’ve wok­en up in the mid­dle of the night and you’re still half asleep. Or it can be things – like the oth­er day, I was mak­ing my break­fast and I was hav­ing a bowl of cere­al and some pep­per­mint tea and I put the boil­ing water on the cere­al and the milk in the herbal tea, which doesn’t seem like a major thing but you don’t notice until you start eat­ing the cere­al or drink­ing the tea and think­ing this isn’t quite right. You have men­tal laps­es where you [laughs], sort of, go on auto­mat­ic and you don’t realise that your auto­mat­ic mem­o­ry is not quite as accu­rate as it should be.

And it can also be where you are stand­ing in the super­mar­ket look­ing at twelve dif­fer­ent vari­eties of cans of beans and think­ing, ‘I know I want beans. I know I nor­mal­ly get a par­tic­u­lar brand of beans. I can’t remem­ber which ones they are and I can’t remem­ber why I want beans’. I have been known to stand in the same aisle look­ing at the same shelves for over half an hour because it becomes over­whelm­ing when you realise, you don’t know what you are doing there, which is quite a scary moment when your brain just spaces out.

Evans: Have you ever had mar­mite on your porridge?

Bar­ber: I’m lucky enough in that I hate mar­mite any­way, so it’s not in my cup­board, but I’ve had similar.

Evans: I like mar­mite, but it doesn’t go with porridge.

Bar­ber: I can imag­ine not! [laughs]

Evans: My expe­ri­ence of fibro fog is on my com­muter route going across a cross­roads – which I did every day in my work­ing life, twice a day, once there, once back – and stop­ping at the lights and not know­ing where on earth to go even though it was straight on. It’s like you’ve been using autopi­lot but sud­den­ly the autopi­lot has failed.

Bar­ber: Yes, the oth­er day I had a social engage­ment and I thought it’s Wednes­day, I know that I have to do some­thing after work, I know that there is noth­ing in my cal­en­dar, there is noth­ing in my email cal­en­dar, I haven’t writ­ten any­thing down but I know I have to do some­thing and I had to resort to post­ing my sta­tus on social media, say­ing ‘I know I was sup­posed to be doing some­thing with some­one tonight, some­where. If it was you, please get in touch because I don’t know who I am meet­ing and why!’ And that’s real­ly embar­rass­ing to admit – you can’t remem­ber your friends.

Bar­ber: Lexy Bar­ber.

Now as we’ve heard, as yet there is no cure for fibromyal­gia but it can be man­aged. Pro­fes­sor Ernest Choy of Cardiff Uni­ver­si­ty again:

Choy: First of all, I think under­stand­ing the ill­ness is a big bat­tle. So I think it’s not uncom­mon for a fibromyal­gia patient to get very frus­trat­ed, so we need to give them an expla­na­tion of what it is. We need to help them to under­stand what the role of, for exam­ple, exer­cise, keep­ing warm, the impor­tance of med­ica­tions – they are not cures, but they help – what they can do is when the pain is bad. And also try to reduce a much as pos­si­ble, oth­er fac­tors that can make their pain bad.

Also to cor­rect some of the com­mon mis­con­cep­tions – unfor­tu­nate­ly, one of the nat­ur­al con­se­quences of pain is that when we get pain, we all stop and actu­al­ly for fibromyal­gia – it’s slight­ly coun­ter­in­tu­itive – because if you stop, the mus­cle will become more decon­di­tioned and over a long time actu­al­ly make the pain worse. And ini­tial­ly, when peo­ple get told that they need to exer­cise, often the pain gets worse and nat­u­ral­ly peo­ple want to stop, but actu­al­ly if you per­se­vere the pain will improve. So it is under­stand­ing that one needs to per­se­vere through the pain: it’s get­ting over, get­ting con­trol of the pain that is the key and that can only be achieved with a com­bi­na­tion of bet­ter cop­ing strat­e­gy and medications.

Evans: Describe what you under­stand as exer­cise. By exer­cis­ing, basi­cal­ly, I’m out of com­mis­sion for five days at least, so are you say­ing that per­haps I should per­se­vere – go through the pain bar­ri­er, if you like?

Choy: Yes, you cer­tain­ly need to go through the pain bar­ri­er. Now, it’s obvi­ous­ly eas­i­er said than done and I also appre­ci­ate that dur­ing the win­ter months, when fibromyal­gia is at the worst doing exer­cise is not the eas­i­est thing. But some things that are help­ful are: that if you can find a local swim­ming pool that is nice and warm, it’s very help­ful to exer­cise in warm water and you don’t even need to swim you just need to exer­cise in water.

The sec­ond thing that is actu­al­ly quite easy to do ­– there are lots of video games, it doesn’t mat­ter if it’s a Nin­ten­do Wii or Xbox – there are some nice fit­ness exer­cis­es that you can do in the com­fort of your own home. You can build up grad­u­al­ly. I’m not ask­ing peo­ple to go to the gym and do an hour with a train­er – that isn’t the idea. It is that you can grad­u­al­ly build up the lev­el of exer­cise that suits your own pace. Some­thing that is par­tic­u­lar­ly help­ful is that if you have those video games at home after din­ner, if you do some exer­cise and then you have a warm water bath, it’s much bet­ter then to go to sleep and it improves your sleep quality.

Evans: Con­sul­tant Rheuma­tol­o­gist at Cardiff Uni­ver­si­ty, Pro­fes­sor Ernest Choy. He is also med­ical advi­sor to Fibromyal­gia Asso­ci­a­tion U.K.

And this is a good point for me to reit­er­ate Pain Concern’s usu­al words of cau­tion, that whilst we 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’s the only per­son who knows you and your cir­cum­stances and there­fore, the appro­pri­ate action to take on your behalf and I think that advice holds good for peo­ple with fibromyal­gia start­ing out on an exer­cise plan.

Now, don’t for­get that you can put a ques­tion to our pan­el of experts or just make a com­ment about these pro­grammes via our blog, mes­sage board, email, Face­book, twit­ter and of course pen and paper. All the con­tact details are at the Pain Con­cern web­site which is painconcern.org.uk and, you can also down­load all edi­tions of Air­ing Pain from there too.

Now there’s plen­ty of good advice and sup­port for peo­ple with fibromyal­gia on the inter­net through char­i­ties such as Fibromyal­gia Asso­ci­a­tion UK, Fibro Action and UK Fibromyalgia.

So what’s the future for the treat­ment for the con­di­tion? Are there any major break­throughs on the hori­zon? Pro­fes­sor Dwight Moulin:

Moulin: I think because the mech­a­nism of fibromyal­gia is start­ing to unrav­el, that we will have prob­a­bly more spe­cif­ic drugs avail­able that will help to cor­rect this chem­i­cal imbal­ance with few­er side-effects. But in the short term, what all of this has done – the evi­dence from the clin­i­cal tri­als and basic sci­ence research in sub­stance P – the most impor­tant thing in the short term is that it has val­i­dat­ed this con­di­tion to make us all aware that this is a real con­di­tion. These are patients who, with the asso­ci­at­ed anx­i­ety and depres­sion, they won­der if they are imag­in­ing it, you know, they can’t get peo­ple to believe them and we know now that for patients in pain val­i­da­tion and accep­tance that they have some­thing that’s real is just as impor­tant to them as the actu­al treatment.

So all this research in the short term, what’s it done is help to val­i­date that this is as real a con­di­tion as pri­ma­ry epilep­sy, it’s as real a con­di­tion as migraine and it’s just a form of chem­i­cal imbal­ance that man­i­fests with pain and fatigue and all these oth­er symptoms.

Evans: What is your advice to peo­ple who are start­ing out on the fibromyal­gia jour­ney, if you like?

Choy: Well I think the most impor­tant thing is – don’t get com­plete­ly dis­cour­aged. There is no cure, [but] the dis­ease can be man­aged pos­i­tive­ly. And there are instances where, you know, peo­ple who have stopped work­ing for sev­er­al years after they devel­oped fibromyal­gia, man­aged to get their life back togeth­er and get­ting back to work, per­haps not at the same lev­el as before, but they’re still able to man­age a rea­son­able qual­i­ty of life.

Evans: I have to say, I gave up work two years ago and now I’m mak­ing Air­ing Pain for Pain Con­cern and it’s been an excel­lent feed back into the workplace.

Choy: Exact­ly! Exact­ly! Rethink about how you can adapt your life due to ill­ness and peo­ple some­times don’t believe me when I say that, actu­al­ly work is quite good for fibromyal­gia. It may not be the same job that you were doing before, but doing some­thing, is actu­al­ly quite healthy, makes the mind more healthy.

Evans: Tak­ing con­trol of your work.

Choy: Exact­ly!

Evans: …would be my advice!

Choy: That’s good advice!


Con­trib­u­tors:

  • Prof Ernest Choy, Pro­fes­sor of Rheuma­tol­ogy, Cardiff University
  • Prof Dwight Moulin, Pro­fes­sor in the Depart­ments of Clin­i­cal Neu­ro­log­i­cal Sci­ences and Oncol­o­gy, Uni­ver­si­ty of West­ern Ontario.

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