little schoolhouse

Non-drug approaches for people with fibromyalgia


ResearchBlogging.org
No-one wants to be told their pain is “in your head”. But given our increasingly sophisticated understanding of pain neurobiology, there’s plenty of reason to agree that thinking, feeling and doing things differently makes life far more rewarding and rich than feeling helpless, fatigued and sore. Some proponents of purely biomedical interventions argue that if only the “source of the nociception” was found, the nerve “zapped” or anaesthetised, then all this psychosocial claptrap could be safely ignored because people “return to normal”. I think this belief shows ignorance and perhaps even arrogance because people process and attribute meaning to everything that happens to them.

I originally entitled this post as “psychological” approaches for people with fibromyalgia, but I’ve changed it after reflecting that we actually do not know which of the various parts of non-drug therapy are most useful for people. There are some core components in self-management approaches, these include explanations (or reconceptualising pain), graded return to life’s activities or occupations, exercise (again, graded), and often some work around thoughts/beliefs/emotions that might get in the way of returning to activities, and some practical problem-solving and goal-setting to help people work out how they’re going to “get on with it”.

While the assumptions are cognitive behavioural in origin – that is, people can take control of what is happening around them, and respond differently even if the pain doesn’t change – most of what happens involves doing things differently in order to bring more of what the person values back into their life, rather than having life dominated by pain.

I’ve written before about ACT, Acceptance and Commitment Therapy, and I find it quite appealing. The ACT approach involves developing skills to be fully present, work towards living a life aligned with your personal values, being mindful of what is (rather than worry about what was, or what might be), being committed to taking action even if the process isn’t always happy-happy, joy-joy. I like it, and in my research it seems to fit quite nicely with what people naturally do. In ACT the coping strategies used don’t fall into “good” or “bad” dichotomies, instead they’re evaluated according to how well they’re working in light of each individual’s values. I like the respectful attitude towards people’s personal values and beliefs, and the flexibility of using “what works” and experiential therapy rather than sitting in a clinic room talking.

The question is whether ACT is any better or worse than any other psychological treatment – such as “traditional” cognitive behavioural therapy.

The jury is out. Frankly I am not sure it’s as much about the particular model or type of therapy used as it is about the way in which it’s introduced to the person. There are CBT clinicians who seem to be able to come alongside a person, help them work out for themselves whether their thinking is helpful or not, and help them shift their perspective nicely. Then there are CBT clinicians who leave people feeling as if they have “stinking thinking” or “maladaptive thoughts”, who “have” to change their way of life, who “must” do therapy “homework” – and blame the patient for failing to do “homework” or being “noncompliant”.  I can, of course, say the same about ACT clinicians and indeed any other form of clinician!

Where does this leave us?

Well, I’m not sure that much has changed in the 20 or so years I’ve been working in this field. What has happened is stronger evidence to show that thoughts, beliefs, emotions and behaviour are linked, and directly influence our experience of pain. People still need to understand, or make sense, of what’s happening to them, get more active and have more of what they want in their lives rather than feeling controlled by pain.

How we achieve this probably depends as much on the person who has pain as the clinician.

We also know that fruitlessly seeking pain reduction leads to demoralisation, frustration and increasing disability.

While I’ve put “fibromyalgia” as the type of chronic pain two of the papers I’ve cited refer to, really I’m not convinced that the problems people experience from their pain differs terribly much depending on the diagnosis. The effect of pain that goes on is the same – a diminishing sense of self identity, increased sense of helplessness and overall difficulty doing and being well. Addressing these effects is far more worthwhile in people’s lives than trying to control, avoid or abolish pain – because some pains just don’t go away.

Luciano, J., Guallar, J., Aguado, J., López-del-Hoyo, Y., Olivan, B., Magallón, R., Alda, M., Serrano-Blanco, A., Gili, M., & Garcia-Campayo, J. (2014). Effectiveness of group acceptance and commitment therapy for fibromyalgia: A 6-month randomized controlled trial (EFFIGACT study) PAIN®, 155 (4), 693-702 DOI: 10.1016/j.pain.2013.12.029
BERNARDY, K., FUBER, N., KOLLNER, V., & HAUSER, W. (2010). Efficacy of Cognitive-Behavioral Therapies in Fibromyalgia Syndrome — A Systematic Review and Metaanalysis of Randomized Controlled Trials The Journal of Rheumatology, 37 (10), 1991-2005 DOI: 10.3899/jrheum.100104
Williams ACDC,, Eccleston C,, & Morley S (2012). Psychological therapies for the management of chronic pain (excluding headache)in adults. Cochrane Database of Systematic Reviews (11) DOI: 10.1002/14651858.CD007407.pub3

 

NB: I have amended the first paragraph because it may have been viewed as unnecessarily pejorative towards a single type of clinician. The truth is, I point the finger at any clinician from any background or discipline if I think what is being done is harmful, illogical or maintains distress and disability, including my original profession of occupational therapy.  I was being simplistic to suggest a single profession is at fault. It’s not the profession per se, it’s the attitude that I strongly object to.  To those who were upset by my original wording, here’s an invitation: if you’re able to demonstrate HOW you integrate biopsychosocial approaches in your practice, I’ll publish it. That’s the beauty of dialogue, and particularly social media.

41 comments

  1. Bronnie, for what it is worth, I think you are “spot on” in your analysis. The label “Fibromyalgia” has outlived its usefulness in so far as the criteria for diagnosis are now so broad as to include most people presenting with chronic widespread pain who seek medical attention.

    The only way that I can make any sense of their predicament is to liken it to the sickness/stress responses long observed in our fellow mammalians.

    In fact all living organisms possess inbuilt evolutionarily-determined stress response systems that are usually kept under tight control. It is when the complex control mechanisms (enabling their self-regulation through self-inhibition) become faulty that things can go wrong.

    In humans we witness the clinical phenomena that we have chosen to label fibromyalgia, post-traumatic stress disorder, major depressive disorder, etc.

    If this hypothesis has “legs” it would explain why our attempts to treat each and every symptom (viz. widespread pain and allodynia, fatigue, sleep disturbance, cognitive problems, and mood disturbance) so often fail. In the end, polypharmacy reigns supreme.

    When dealing with such profound whole body disturbances, it makes sense to adopt a whole person system approach. We have termed this approach the wHOPE (whole person engagement) model of care.

    Patients who have been provided with this particular story do seem to find that it makes sense to them. However, there may be better ones out there that I have yet to discover.

    1. I agree John. I think people with fibromyalgia (and I’m one of them) accept the label because it has social utility. People know what we’re talking about when the term is used. It doesn’t, however, have clinical utility beyond indicating that people with that range of problems probably have a “sensitive nervous system” – and so far we have few, if any, pharmacological approaches to settle that sensitivity down.

      In terms of management, if medications don’t help, then we really are looking for lifestyle adaptation. This doesn’t mean giving up on doing things! It does mean gently and gradually introducing new things so there is more of life in life rather than pain.

      The fundamentals of managing chronic pain haven’t changed in the last 20 or so years. We’re a bit more confident about some of the mechanisms, but I haven’t seen any startling new treatments that can do much more than what we could offer in the 1980’s. Hopefully we’ve moved beyond jabbing and cutting and burning and drugging quite so many nerves, although I’m not entirely sure everyone has got this message (!), but despite the innovations in psychological approaches I think it does come down to what John Woden said “Do not let what you cannot do get in the way of what you can.”

  2. I do not have fibromyalgia, and my pain’s physical cause does cause me other issues. That being said, is there a way to just choose to say, “okay, my body does this, this and this, and now I am going to live like none of those items matters in any way?” In some ways, it sounds like this is the therapy’s objective (in part, the vernacular “just get on with it,” which suggests saying, “it happened, we know why, now it’s over and life is going to go back to what it was.”).

    Can I choose to quit all my pain meds and just get on with it, too? I have been wondering how much of my fatigue is from being up five to six times a night every night, and how much of it is side effects, and yearn for the woman who worked full-time, took care of my kids, and managed to paint a 1600 s.f. house (interior) in a week. I ponder bringing this up with my doctor – how do we go about withdrawal, and where will it leave me, you know?

    How do I know the right choices here? Would I have been better off not starting pain management 5 years ago?

    1. These are important questions that cannot really be answered. I do know that in America many pain sufferers have become disillusioned with their health care practitioners and are seriously questioning the efficacy and tolerability of the medications that they have been prescribed. Yes, it seems that a heart to heart discussion with your medical practitioner would be well worth pursuing.

      1. It is a hard thing, John, and made even more complicated by the current environment that surrounds pain management and pain patients in the US. Between advocates who are pushing for pain meds to be only available for limited post-surgical periods (a few weeks at most) and end of life for painful conditions and the “war on drugs” here that has demonstrated issues with pill mills, etc., many well-meaning doctors and sincere, well-behaved pain patients have been caught in the crossfire. The state I am in has not been a big problem area, so I haven’t had too much trouble so far; my first doctor retired (i was lucky – he had me as a patient seven years before the disease got to a point where it needed it, and I had been diagnosed with two other painful conditions and didn’t even ask for a tylenol; just said, “Okay, that’s what’s doing that” and moved on, so he knew that I was likely being honest, etc., with him; a level of trust was already there) and another doctor that I really like accepted me. I have had horror stories (interstitial cystitis patients tend to network with each other; sometimes that is a good thing, but with the wrong psychological issues, it can also be a really bad one).

        So, there is not only the worry of whether or not I am doing the right thing doing this, but also whether or not I will one day be faced with forced withdrawal in relying on this, plus reading all of the anti-long-term-narcotic arguments assuring me that my quality of life would be much better if I would quit being an addict and just get on with life. It is a hard question. I would have to admit that managing my pain has improved my quality of life – I can make a meal for my family, participate in some activities that I enjoy and my pain levels are manageable enough that it isn’t physically visible at a glance how bad it is (there were things I couldn’t control, such as pallor, sweating, etc.)

        The other day was a really difficult moment. I am scheduled for wrist surgery because of an injury, and was broaching the issue of my narcotic use and the doctor immediately filled in, ‘You’re an addict?’ In a physical sense, he is, of course, correct. It then asked me the larger question: even though I am a very well-behaved pain patient – I never concentrate my meds, never take more than prescribed, no matter how bad the pain gets in a flare or with infection, etc.

        Addict, with all of the negative connotations, has to apply to me; my body is physically dependent after this long, and would require withdrawal. I do not have drug-seeking behaviors, abuse them, etc., etc., but … I am an addict.

        That is a hard thing to be.

  3. It’s never as easy as “just get on with it”!! Never! And I think it’s unsafe to just quit medications cold turkey and begin doing everything just the way you used to – that will probably last about a day! Instead, I think the approaches that work most effectively involve gradually making sense of your pain (knowing what’s “normal” for you, your usual ups and downs of pain, what can provoke it, what can settle it down, the impact on fatigue and doing other things in life). Then choosing what’s important in your life and beginning to plan ways to begin to do these things again. Chronic pain does mean gradually increasing your activity level, findings ways around pain, deciding to allow your pain to come with you rather than waiting for it to settle, but at the same time not going mad and pushing yourself until you crash. It’s a bit of a tightrope balancing act, or at least mine is.

    I think it does begin with accepting that life won’t go back to the way it was five years ago – you’re not the same person as you were then, you’ve learned some, you’ve grown some, you’ve lost some. Priorities change. But looking at what it was about those things that made them important might help when deciding what to reintroduce to your life. Maybe painting the house was one way to express competence, maybe it was to show your pride in your home, maybe it was a challenge to yourself. How could you demonstrate competence, pride or challenge today? Maybe the activities are different, but you can get some of those feelings back again.

    As for quitting medications – this always needs to be done carefully and with the support and care of your healthcare team, particularly your doctor. Some people find medications really helpful – I use them for my mood, but find them next to useless for my pain. If you stop your pain relief you may find it tough dealing with an increase in pain – but at the same time you might find it easier to think more clearly.

    It’s OK to grieve for the things you’ve lost. Having chronic pain is not something anyone ever enjoys. It changes life. Acceptance doesn’t mean being happy about it, but it does mean acknowledging this is the way it is.

    And acceptance also means willingness to have the pain increase if it also means you do something you love again. For me this means I accept that I’m going to be tired after a long weekend away at a conference, so today I’m taking it more quietly and not expecting everything I usually do to get done. Not easy when I’m packing the house to move out for repairs next week! And yes, my FM pain has gone a bit nuts because I’m tired. But I had a great time at the conference and I know I’ll feel better in a day or so.

    I did find a good article on sleep, which seems to be your main problem – this is the link – http://www.ichelp.org/document.doc?id=187

    Maybe it’s time to see a pain management centre – not for medication, not to reduce your pain even, but to begin working with someone who is prepared to walk alongside you as you make plans for the future and begin getting them underway. What makes you feel joy? What would you be doing if pain wasn’t such a problem for you? What tiny steps could you take to get some of that joy and passion back?
    And yes, it’s absolutely fine to say “I’ve done enough for a bit” and take a rest – but if you do this for too long, I’ll bet you feel rotten, so set a time limit on it, and choose something you’ll do then. Maybe go have a pedicure or get some flowers or have just one perfect chocolate. Savour it and you’ll know that despite the pain and fatigue there are good things in the world.
    Thanks so much for posting – it would be so good if there were a set of rules you could do and know everything will turn out in the end, but instead it’s a shifting moving set of choices that could go any which way, and I’m so glad you feel you can make contact.

    1. Thank you for your response. I didn’t respond because I’ve had a million things to kind of manage lately – most recent adventures include having our driveway develop a sinkhole due to the massive recent flooding, as well as a pretty nasty kidney infection. Apologies for not responding…

      I actually do much of what is suggested in the article; I have read most of Doctor Moldwin’s works, and have a real appreciation for his passion for improving the quality of life for interstitial cystitis patients. That being said, because it is so hard to distract yourself at night vs. daytime, the only way I can go to sleep at all is by using a heating pad (WITHOUT auto shut-off; otherwise when it shuts itself off, I am immediately awakened by the my brain once again going, “hey, that burning sensation is inside, and that means that you must have to pee again…”). I have brought up this issue with every doctor – they allow me one soma (the first doctor was afraid of valium, no matter how prescribed, and preferred soma; when he retired, my new doctor said, “Why mess with what works?” I have second degree burns/”toasted tummy” from relying on heating pads to be able to doze off.

      I have honestly gotten desperate enough to consider cathing myself and using a bag at night sometimes, but that brings increased risk of infection, and I seem more prone to them in the past two years as it is. I do multi-modal therapy, i.e., tricyclics plus gabapentin to help calm down nerves, etc., not relying strictly on just on narcotics in and of themselves. With the heating pads and the med cocktail I use, plus the usual – the whole helping having sleep rituals, etc., once I can make myself STAY in bed (I have a 10-year-old cat who realized how radical my behavior got when my IC became very severe, and also realized that I hate moving him – after the fourth bathroom trip in 45 minutes he will climb on top of my chest and stay there, purring, until I doze off) I can usually sleep two to three hours if I haven’t had anything to drink for at least four hours before retiring.

      I have felt kind of unheard – I have brought up the fact that the only way to distract myself (that I have found that works) has been not just a heating pad, but playing with heat until it is warm enough that my brain isn’t sure if the heat is outside or inside. I now that prolonged behavior like this risks skin cancer, and that it is maladaptive, but I really struggle with the amount of medication I take already. Was raised in those Reagan years with “just say no,” and also read all of the lovely things about “drug-seekers,” etc., and cringe every time I ask for us to look at a new way to deal with this.

      The pain management person is a good idea, though with limited finances and far travel, a bit harder. It is one of the reasons I was relieved to have a hands-on, confident primary care doctor who will provide pain management and chronic disease management for patients who are stable on what they are doing. If I actually drink enough water to stay hydrated (rare; I can only do it if I plan to not leave my house), my frequency has me in the bathroom 3-4 times per hour, on average, with a voided volume between 75 and 100 cc.

      I actually have things I love that I still pursue, including music ministry at church (they are flexible if I miss, and have been known to sing acapella if I’m in the bathroom when they have another song), some small livestock (chickens only take 15 minutes a day, and a strong teenager can clean the coops), and supporting and mentoring newly diagnosed IC patients, because my own experience has taught me that as my knowledge and confidence increased, my anxiety (and to at least some part, the pain levels) decreased. When every uptick after diagnosis is “is this progression? A flare? How long does it last? How do I make it quit?” You end up in an even worse state. It is nice to look back from years of experience and be able to encourage others that it does get, at least… to a new normal.

      The other thing that I will probably always struggle with, even though I know on an intellectual level that my value is not linked to what I accomplish, is the very human way that we do that – if we aren’t doing for ourselves or others, it makes us feel like less of a person. I was “blessed” in a weird way – our family has a dominant hereditary brain disorder and my father was afflicted – his inability to do as much in no way affected my love for him, and, at least my BRAIN knows that I am not loved less for what I no longer can do for my family. Sometimes, though, my heart still yearns to be super woman. 😉

  4. As alluded to by John the best treatment approaches appear to be ACT or CBT which treats the suffering, the experience. Acceptence, present moment awareness, values based choices, commitment to action, defusion from unhelpful pain history and return to self as context. This helps people who are suffering. Be that FMS, CWPS, or the rest of the many facets of human suffering – depression, anxiety, suicidal ideation, schizophrenia, anorexia. We are not treating the cause because at the moment it is unknowable – but we can help you have a better experience of your inevitable suffering.
    Kind thoughts,
    Steve

    1. Bronnie and Steve, let us not fall into the trap of thinking we are treating experiences (pain and suffering) when in the clinical context we are attempting to help (treat) a distressed fellow human being.

  5. John, Is the distress at the experience not the only thing we can treat in conditions like FMS? Nothing else has any great evidence. Is that not why pregabalin is helpful for 1 in 6 – because it is acting as an agent to moderate generalised anxiety – and so treat the distress of the condition.
    Kind thoughts,
    Steve

    1. I know that if we help people reframe their experience, they report reduced pain intensity. I also know that if we treat depression, people report reduced pain intensity. Given that we can’t measure pain directly, what we obtain from people is their communication of their experience and this is undoubtedly a combination of pain intensity, pain quality, distress, predictions for the future, memories of the past and so on. I don’t think I’m directly influencing an individual’s experience – but what I am doing is giving them access to tools that may help them influence their own experience.

  6. I have had FM since 96 . Other chronic illnesses have followed and I’m up to six right now. I know the futility of chasing treatments that don’t work or only work temporarily. . I would like to know more about that acceptance and committment therapy because I am really struggling still with acceptance…it is very hard some days to keep going. I could go on and on but I won’t.

    1. Acceptance is really difficult – what it doesn’t mean is being happy about being in your situation. It means instead being willing to
      Accept your reactions and be present
      Choose a valued direction
      Take action
      So if you’re feeling grumpy or sad because of your situation, let that experience be present AND at the same time carry on doing what is important and brings joy and value into your life. So in my case I have a flareup of FM and I’m packing to move house, so I bring my irritation and fatigue with me as I pack the house – because I know that I’ll be feeling better with myself if I do keep on going. And if/when I feel I’ve had enough, I’ll stop – for a while – then return to it when I’m ready. It’s quite a flexible way of viewing the way we live life. I’ll post some more once our house shift is over, probably in the next couple of days.

    2. the word acceptance in this context does not have some of its more common connotations – I read someone describe it as “a moment by moment behavioural choice” the other day and I quite like that. We work to make the moments when we choose to move in the direction our values lead us out weigh the moments when we don’t. I feel this is sometimes more like when sailing people tack to get where they want to go against a head wind. You may be having the thought that other people do this better than you. Thank your mind for that thought too it probably is not helping – because they probably don’t.

      1. Love that description of acceptance! I’ve been struggling to put it into words, and I think that captures the essence – it’s not an emotion, it’s a decision.

  7. Bronnie, the evidence suggests that clinicians cannot but help influencing the experience of their patients. The very act of giving them access to tools can in itself be life-changing in this context. Furthermore, through these on-line discussions, where you inject your wise counsel, you have the potential to effect significant changes in your readers’ experiences.

    1. Thanks John, I hope we can (you and others commenting on here too) help people see their situation with fresh eyes and a sense of hope. In essence I think I try to help people develop an identity where pain is only a small part of “who I am”, and the rest of life is far richer and more important than the pain. What I don’t like seeing is when pain dominates everything and people feel they don’t have choices and where their identity and life is put on hold waiting for some kind of “cure” that can take all the pain away so things can get “back to normal”. The thing is, “normal” may never be achieved and in the meantime the things that make life what it is can slip away. If there is one thing I’d like to do it’s help people (clinicians especially) see that having pain is not inevitably a dire and dreadful situation, it’s just another part of life to experience. I hope I don’t seem like I’m trivialising having pain, because there are times when it does feel like it takes over, but what I have learned for myself and while working with people who have chronic pain is that while it’s not easy to have pain, it’s far far worse to be living in limbo land while some clinician goes about fruitlessly trying to “abolish the source of the nociception”.

  8. Bronwyn, perhaps you should have kept your original title of psychological approaches to fibromyalgia and stuck to your knitting, rather than lambasting another group of professional whom you clearly know little about. As a musculoskeletal physician, I can assure you we do not believe in purely biomedical interventions, but a wholistic approach to the person in pain. Fibromyalgia is one example of a chronic pain problem without an obvious peripheral pain focus where we all agree that psychosocial issues are at the forefront of therapy. However there are many chronic musculoskeletal pain problems that have a underlying pain focus that may have been ignored by so called “experts” in chronic pain management.
    Here is a simple example of chronic peripheral pain from personal experience: I have been putting up with a painful molar tooth for over one year now where I have not been able to chew hard foods on the left side of my mouth. My dentist filled a tooth a year ago that made no difference to the pain – maybe aggravating it. The pain waxed and waned and I put up with it for months. For a while the whole side of my jaw was aching and I had trouble localising the pain to a single tooth – I became more sensitive to cold foods, it was throbbing t times at night, Was I going mad or developing some sort of centralised pain phenomenon? Maybe? Finally I did narrow down the tooth options and went back to the dentist – rigorous testing identified a different cracked tooth and it was filled. It took 4 weeks to settle down – but it is 98% better now. My pain was getting me down due to loss of enjoyment in eating but did I need a psychologist or some one to tell me to learn to live with the pain?
    As a musculoskeletal physician in Melbourne, I work in a truly multidsciplinary team including a spine surgeon, physiotherapist, psychologist, occupational therapist, exercise physiologist where we give people evidence based options for treatment based on a thorough assessment of their pain and what may be causing it. The challenge in this field is identifying all the contributing factors and treating all of them equally. Fibromyalgia, whilst largely a central pain problem, may also benefit from a multipronged approach.

    1. Victor, I will take you up on two points (as I am sure Bronnie can come to her own defense):

      1. You have said: “[T]he challenge in this field is identifying all the contributing factors and treating all of them equally.”

      Assuming that a clever clinician is somehow able to accurately identify all the contributing factors to the biological predicament of a given patient with Chronic Widespread Pain, why would that clinician then need to treat them equally? Surely some factors might be more important than others. In case I have misinterpreted you, can you please explain exactly what you meant to say?

      2. Also that: “Fibromyalgia, whilst largely a central pain problem, may also benefit from a multipronged approach.”

      What do you mean by the term “largely a central pain problem”? How do you know this?

      The problem I see in with multi-disciplinary teams in this context is that the various team members may not be all “singing from the same song book”. Who is to be the choir master?

      1. Thanks John – note my response! I agree with your comment – if there is a multidisciplinary approach, it can so often become “serial monotherapy” as I’ve said before. Lots of people doing their thing in parallel yet not agreeing on the problem/s, the approach/es, or the priorities. It’s why I like the case formulation approach – it’s so very helpful for everyone.
        BTW I have had a clinician offer to give me tender point injections to address the “peripheral factors” involved in my fibromyalgia. The problem being – they move, they come, they go, and there are so many of them I’d be a lot like a porcupine. I don’t know the various factors associated with my widespread pain, I DO know some factors that help me manage both it and my life more effectively. I don’t think FM or widespread pain is a single entity, I think there are probably many shades of gray in this kind of pain.

        Here’s a question: do you think that if you knew there was no “cure” or solution for your pain, or for pain like the pain you have, would you adapt to it, develop acceptance, or continue looking for “something”? Expectations of complete pain relief are SO very high within our Westernised culture that I think this makes acceptance much more difficult. I recently listened to a wonderful talk by a doctor who worked in Nepal. The Nepalese carry enormous weights on their back, taking the weight completely through a head strap. The doctor said that he NEVER in all his time working at the hospital saw a person with neck pain. Back pain, now and then, but never neck pain. And people with OA knees and hips carried on working because (a) there was an expectation to (b) there is no social welfare and (c) they traditionally have no treatment for it. They still experience pain, but limited disability. Disability is the thing I want to address far more urgently than pain itself, because it’s being disabled that can lead to so much distress and socioeconomic disadvantage.

      2. Bronnie, I cannot honestly answer your question because I do not experience pain on a day to day basis. I suspect my answer would be YES.

        But I would steer well clear of the “dry needlers” who have in my opinion wholeheartedly embraced a bogus construct – that of the Myofascial Pain Syndrome (MPS).

        The MPS construct is best summarised in the words of one of its creators as a “complex of sensory, motor and autonomic symptoms that are caused by myofascial trigger points [1].” In turn, trigger points were defined by him as “spots of exquisite tenderness and hyperirritability in muscles or their fascia, localised in taut, palpable bands…”.

        In other words, myofascial pain is caused (sic) by painful loci in myofascial tissues – a classical circular argument. Milton Cohen and I first exposed the flawed argument in 1984 [2]. Our warning fell upon deaf ears.

        Irrespectively of this fallacy of logic, the scientific validity of MPS turns on whether this set of assertions does in fact explain and predict the natural processes that underlie localised deep muscular pain.

        In my opinion the evidence to date has been so unconvincing that “dry needling” can safely be relegated to the dustbin where reside so many other speculative systems of treatment that were once confidently inflicted upon desperate patients (= sufferers). The proponents of this and other modalities of treatment have conveniently ignored the possible significant contributions made by contextual factors when praising their efficacy.

        Of course in a free society, consenting adults can agree to inflict pain upon each other in whatsoever manner they see fit.

        References:

        1. Simons DG. Muscular pain syndromes. Advances in Pain Research and Therapy 1990; 17: 1-41.

        2. Quintner JL, Cohen ML. Referred pain of peripheral nerve origin: an alternative to the “Myofascial Pain” construct. Clin J Pain 1994; 10: 243-252.

      3. Contextual factors are incredibly powerful – and I can see how powerful the process of receiving a needle, under an image intensifier, in a hospital setting, with a promise of pain abolition can be. So much more powerful than taking a pill a day, or even using mindful awareness or breathing. And the notion of MPS has definitely had its day! I declined the offer of injections/needles, and, like the participants in my study, I think I live pretty well despite having pain.

    2. Welcome to the discussion Victor! I don’t want to provoke tangential discussion, but I DO want to point out that there are many clinicians of biomedical orientation who persist in tracking down the source of the nociception some years after the original onset of the pain. While this is not limited to musculoskeletal physicians, the current focus on diagnostic blocks followed by nerve ablation seems to have exacerbated this tendency within this group. While I pointed to musculoskeletal physicians in this instance, please note that throughout this blog I also point the finger at other health professionals including my original profession! Don’t feel singled out! It is good to know that you do work within a multidisciplinary team, many musculoskeletal physicians do not. This is particularly relevant where a GP becomes interested in musculoskeletal medicine and does not have a team within which to work. Ideally, of course, it would be an interdisciplinary team where the whole team has the same model of management and can work together (Linton & Nicholas, 2008).

      I would have been more persuaded that musculoskeletal physicians work in a biopsychosocial and interdisciplinary fashion had you given me an example of how you have done this with a patient.

      The tension is not necessarily around the primacy of biological factors versus psychological and social ones, it’s around the shift from pain reduction to pain management as the key focus of intervention. I’m sure there are many people who can recount similar stories to you and your sore tooth, and equally, there are people who can describe having tooth after tooth filled or removed as a dentist tries to find the source of their pain – to no avail (Tassinari, Migliorini, Girardini & Luzzani, 2002). I’ve certainly seen patients in this situation.

      The reason I’m critical of the ongoing pursuit of diagnosis or pain reduction is this: while a person continues to hope they will “return to normal”, they live a life “in limbo” (Hellstrom, 2001). They often find it difficult to plan ahead, not knowing whether to relinquish cherished dreams, approach them in a different way, or just wait until they can resume them. During this time it’s difficult for people to remain calm, maintain their relationships, keep working, keep having fun.

      At some point, and given the weight of evidence on the influence of psychosocial factors on chronic disability hopefully sooner than later, I think it’s important that people are given the clear message that their pain is likely to remain. This allows them the opportunity to begin the process of acceptance, something that seeking a cure does not do (Van Damme, Crombez, & Eccleston, 2008).

      One of the complications in healthcare, and something that psychologically naive clinicians fail to recognise, is that seeking treatment is, in itself, a pain behaviour – designed to communicate (Hadjistavropoulos et al, 2011). Treatment seeking is associated with higher levels of distress, catastrophising, disability and it’s a learned behaviour developed from childhood (Ferreira, Machado, Latimer, et al, 2010). Clinicians respond to treatment seeking, and particularly to distress associated with treatment seeking, thus reinforcing the process of seeking treatment. Responding to distress with analgesia, investigations, injections, infusions may settle the distress in the short term – but it fails to address the distress long term – in fact, it can amplify distress (Salkovskis, & Warwick, 2001). And given the relatively limited outcomes from medial branch ablations (roughly 50% success rate in a recently reported study (NZ Pain Society Conference 2014)) for example, the distress is likely to rise again.

      The fact is, while your pain bothered you, you did put up with it – using the very skills we encourage people with chronic pain to use. Unfortunately, for many people there is no effective treatment from a biomedical perspective. The longer the delay before these people can access self management using a cognitive behavioural approach within an interdisciplinary team, the more distress, disability and human tragedy we see. I think people with chronic pain deserve better.

      Ferreira, Manuela L., Machado, Gustavo, Latimer, Jane, Maher, Christopher, Ferreira, Paulo H., & Smeets, Rob J. (2010b). Factors defining care-seeking in low back pain-A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi: http://dx.doi.org/10.1016/j.ejpain.2009.11.005
      Hadjistavropoulos, T., Craig, K. D., Duck, S., Cano, A., Goubert, L., Jackson, P. L., . . . Fitzgerald, T. D. (2011). A Biopsychosocial Formulation of Pain Communication. Psychological Bulletin, 137(6), 910-939.
      Hellstrom, Christina. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi: http://dx.doi.org/10.1080/08870440108405493
      Linton & Nicholas. (2008), Harald Breivik, Michael Nicholas, William Campbell, Toby Newton-John (Eds.), Clinical Pain Management Second Edition: Practice and Procedures, 2008: CRC Press.
      Salkovskis, P. M. and Warwick, H., 2001. Making sense of hypochondriasis: a cognitive theory of health anxiety. In: Asmundson, G., Taylor, S. and Cox, B. J., eds. Health Anxiety: Clinical and Research Perspectives on Hypochondriasis and Related Conditions. New York: Wiley, pp. 46-64.
      Tassinari, G., Migliorini, A., Girardini, F., & Luzzani, A. (2002). Reference fields in phantom tooth pain as a marker for remapping in the facial territory. Functional Neurology, 17(3), 121-127.
      Van Damme, S., Crombez, G., & Eccleston, C. (2008). Coping with pain: A motivational perspective. Pain, 139(1), 1-4. doi: http://dx.doi.org/10.1016/j.pain.2008.07.022

  9. Steve – you say “Is the distress at the experience not the only thing we can treat in conditions like FMS? Nothing else has any great evidence.” Huh? Sure, we don’t know what FM is as a clinical entity, but that doesn’t mean we can only treat “the distress at the experience”. More and more I feel like people are judging people with chronic unexplained pain as if they have a bad habit they should be able to inhibit or control at will. “Distress at the experience” is understandable when the experience is pain. But I disagree that all that can be addressed is this reaction. Pain is an opinion to be argued with in many ways, but it still can be addressed at face value as simply pain- and pain by definition sucks. Anyway – lovely discussion you have started Bronnie and John! I agree- meds are not the end all be all and acceptance is powerful. Compassion may also deserve a place at the table.

    1. Hi Nancy,
      Compassion, yes. Our compassion for the patient to gently ease them from a medical model that disbelieves them, argues it is all in the head and frustrates them with reductionist medical approaches to each ache and pain as though the whole body pain was not the real issue. Nurturing an approach of compassion for self – which is often a challenge for our patients – who would not treat a friend the way they frequently treat themselves.
      My point is that all facets of FMS give rise to distress above and beyond just the pain. The ofg. The bowel. The fatigue. The inconstancy of experience. The way symptoms fade on holiday to return on coming home. The awful sensitivity to a wide variety of experience be that temperatue or noise or light or whatever. All I can see is the distress that these experiences generate. And whatever is found to be the root of this syndrome in the way the nervous system processes information I fear it will not be easily remediable by medicine. This will leave us still only able to treat the distress. Through re-assurance, understanding and techniques like ACT to defuse folk from the way their pain history has left them distanced from themselves.
      I work in a team that tries to do this with some patients with FMS and it works. The distress at the condition reduces quite a lot and the pain is reported as being slightly less. We don’t use drugs. We wean from meds once the self-management techniques are in place. We don’t focus on exercise – we let the patients values guide them back to the activity that they derive meaning from. We root it all in mindfulness practices which seem to have good evidence currently to help with pain. We try to do this in a group setting where folk make bonds of friendship which sustain them long after they finish with us (although we can’t make that work😉 ) but at least the isolation of the experience of FMS is undermined by sharing with others.
      My stance is that medically unexplained symptoms that cause distress are largely beyond an attempt to control with thought or will. That version of the medical model sets folk to fail as our thought are not in our control and or will is to my mind mostly an illusion of mind.
      But we are learning – listening, observing, reading and reflecting. We were not doing this sort of thing ten years ago and I will not be doing this this way in ten years time.
      So it goes.
      Kind thoughts,
      Steve

      1. Your eloquent description of how ACT can help is compelling and sensitive. Compassion is one of the main reasons for working like this, for me. We don’t have all the answers, and I can’t directly influence pain, but I can listen, I can be with, and I can come alongside – and hopefully we together can make room to have not only the distress, the pain, the fog (or the ofg!) and so on, but also the richness of life, peace of the sunrise, aroma of good coffee, intimacy of good relationships. And we can walk together, bringing all of this with us, and move closer towards the values we hold. And that is life.
        What I love about ACT is the generosity of people like you who share your experience and compassion with others. There is a community of ACT that is so very rich and supportive. Thank you for contributing to this discussion, I truly appreciate it.

  10. Lets get real here folks – there is very little evidence for any therapies in treating fibromyalgia – psychological therapy hasn’t been shown to be better than anything else. Why? – possibly because it may not be one single entity. There is still argument over diagnostic criteria – some argue whether it exists at all. There is overlap with post viral chronic fatigue syndrome / depression and irritable bowel syndrome. How many of these are primarily caused or aggravated by underlying psychological disorders nobody knows. I agree with you John it is fruitless trying to treat moving peripheral pain when the driver is primarily central in most cases.. However there is also a large group of people that develop widespread pain secondary to an initial localised pain – commonly seen in motor vehicle accident patients. The work of Lars Arendt Neilson has demonstrated that the degree of central sensitisation and spread of pain is directly proportional to the severity of pain and the duration of pain. The tender muscles which may contain taut bands are rarely the cause of pain – but part of the consequences. In some cases treating the local muscular component of pain can be dramatic. Experience working within a team is valuable, and I agree there are many solo practitioners in lots of different fields that fail to recognise their own weaknesses and biases.
    I am not sure I have ever seen evidence that telling a patient to accept their pain is permanent has better outcomes that giving patients hope that their pain may just get better with time. My experience over 28 years tells me patients do better with positive expectations ( where it is appropriate ). As we have no evidence that fibromyalgia is a terminal disease why tell patients that it is incurable??
    I’ll be happy to provide some more answers for you John Q on another night.

    1. Bronnie, I cannot agree that MPS has “had its day”. Many therapists around the world practice dry needling in a big way, alongside a variety of other passive and useless treatments. Furthermore, Lars Arendt-Nielsen (who is mentioned by Victor) is a prominent and prolific researcher who appears to be still wedded to the bogus MPS construct.

      I agree with Victor that engendering positive expectations in our patients is preferable to telling them that FM is incurable. As he points out, the current ACR 2010 diagnostic criteria are likely to meet with skeptical looks from hard-nosed clinicians, some of whom tend to find themselves strangely attracted to third party personal injury insurers. But that is another story!

      It seems to me that a biologically plausible explanation for the clinical phenomena of FM has to date been elusive. Many clinicians may not be aware that Lyon, Cohen and Quintner (2011) have published a scientifically credible hypothesis that is being increasingly welcomed by patients who have been awarded the FM label.

      Whatever other virtues it may have, it is the first hypothesis to transcend the body/mind substance dualistic thinking that has been so damaging to the credibility of so many patients.

      Reference: Lyon P, Cohen M, Quintner J. An evolutionary stress-response hypothesis for chronic widespread pain (fibromyalgia syndrome). Pain Medicine 2011; 12: 1167-1178.

    2. Hi Victor,
      Acceptance is pretty much the life’s work of Lance McCracken if you search for his many published articles which have the evidence for why it is often the critical factor in someone successfully ‘living with pain’.

  11. There are many studies showing that giving people clear, unequivocal advice about their health status gives them the opportunity to make their own decisions about what to do next. My study showed very clearly that people who were advised that their pain was unlikely to completely go were released from the need to wait around in limbo land for ‘normal’ to return. It’s not the only study showing this. It’s not about removing hope – but it is acknowledging the reality that we do not have very effective treatments for chronic pain, particularly fibromyalgia but not only FM.

    I think it’s in the way the news is given – and giving people false hope that life will return to normal ‘some day’ or ‘if we just look a little harder to find the source of your pain’ seems relatively harmless until you see people some 3 to 13 years later, life on hold, still waiting and hoping for a cure that works. I think that is cruel. I don’t know who is helped to feel better by doing this – it doesn’t seem to be the person with pain.

    While so-called psychological approaches have small effect sizes, what is in their favour is very few complications or adverse effects. No ongoing costs. And the skills are portable and have no calories! Remember too that most studies looking at CBT approaches are in relatively unselected populations, with individuals who have had pain for many years. The baseline recovery is very low. Yet programmes demonstrate effects that are small to moderate. Across the board in this very challenging group.

    What I find interesting is that once again, when we begin to discuss chronic pain, the old mind-body argument is thrown into the ring. Of course people with chronic pain have mental health problems, and of course there are psychosocial factors involved in the evolution from acute pain to chronic disability. What I think I’m hearing is ‘well, it’s not the treatment we’re giving that’s at fault, clearly the problem lies with the person.’

    One of the most effective and well-researched treatments for depression and anxiety is CBT, psychological approaches. My question is why people with chronic pain are not supported to access this option early in their trajectory of chronic pain. Instead, fruitless investigations and short-term treatments are offered, maintaining the belief that if only the source of nociception can be found, pain would be gone. What price knowing where the source of nociception but having a 50:50 chance of doing anything about it?

    More importantly, who benefits more? The practitioner who avoids having to break bad news, but continues to foster dependence on passive, external treatment, or the person who remains in limbo land, or on the roller coaster of hope & despair with each failed treatment?

  12. To ic2manywords. You are not an Addict!!!!! Everyone on long-term opiate medications becomes dependent but this phenomenon is NOT addiction.

    1. I admit to being shocked and hurt by the directness of the surgeon who will do my surgery. I had never had my sentence finished with the words, “You are an addict.” Now, it could be, since they had already asked the ‘safety at home’ and other such screening questions, that he thought I was led to share something. I had, of course, listed all the medications I take on my health history, but last year’s knee surgery taught me that doctors don’t give the meds too close of a look, and that it is necessary on my end to let them know that I am opiate tolerant to be sure they titrate post surgical pain medication appropriately and that they work with the doctor who manages my treatment and all are aware of what is going on (in the US we have to sign contracts that promise to do so, as well as other promises). I was trying to do what is right and proper in a pre-surgical consult.

      With the stigma attached to opiates and their use, it is hard to be a long-term patient taking them. I might be a little too sensitive, but reading much of the advocacy against their use for patients like me ends up making me question everything about my life. I know that before I started them the physical strain of walking across my house, cooking a meal, etc., was more than my body could tolerate. Visceral pain and the resulting damage to the nerve systems as it continually causes up regulation is even difficult to describe well, compared to the pain of a broken bone, abscessed tooth, etc.

      Thank you for your direct response, Doctor Quintner. You have touched my heart.

      1. I think you’re very brave, and you know how and why opiates are doing what they’re doing for you. As John said, you’re NOT an addict, but your body becomes dependent on opiates. Opiates have developed such a great deal of mystery and hysteria, but they do have their place. It’s the attitudes towards people who have, often through no fault of their own, been prescribed a drug that has this negative connotation, that can be so harmful. I think your surgeon might benefit from reading some good information on long-term opioid use, and perhaps a little bit of education in communication skills. Take heart that there are people who care, that we are learning more about ways to help people who have chronic pain, and that we have the wonderful internet to allow us to connect.

      2. Bronnie, we (our Western society) find ourselves trying to sit on the horns of a dilemma, a most uncomfortable position. My reading of the situation in the USA is that the new speciality of Pain Medicine is fighting a rear guard action against those who are trying through legislation to severely limit the opioid prescribing rights of physicians. Of course there are many others (including people in pain) who have voiced their opposition to this approach. But the issue that is deserving of recognition and at least some sensible discussion is how we currently frame the experience of pain, both as health professionals and as sufferers. Does this suggestion resonate with you?

  13. Pain is a universal experience but its treatment changes across a national boundary. It can be useful sometimes to see what other countries attitudes are to the techniques that we are using.
    I have long been curious as to the influence of special interest groups spending a lot of money lobbying politicians in the US. And the secondary effect that the legislative landscape that that produces on what is accepted as pain medicine across the world. The pro and anti drug messages in the US have their effects for sure but also the ‘interventionists’ like ASIPP who spend a lot of money as an organisation and as individuals to skew the playing field of evidence based care. As they attempt to skew evidence based care with their version of a peer reviewed journal and their attempts at medical scientific exploration. But I digress.

    From my parochial perspective I agree wholeheartedly with John – you are not an addict. You are using a tool to an effect. Tool use is defining of human kind. You could choose to walk more and take the car less, same same. Yes those tools have an effect on you but that is part of the choice you make. You could choose to not take medications – but would the effects of those choices move you closer to your values. It would move you closer to some for sure – frequently people value living without the support of medication but the consequences might be that you would suffer more pain and through that suffering be able to be less effective as a parent or carer and that loss of valued activity would cause you a greater sum of distress. Life, real life is values clashing – you make your choices to be the best you can be given the limits your experience of pain puts on you along with lifes other limits too. It is difficult. It is hard. But it is you being the best you that you can be. Using medication as a tool to be better on balance.

    Oh and surgeons can often say stuff that they do not understand the consequences of. This could just be a clever person being slightly but importantly ignorant, not a dick. They might just not get you. They do not know that they are stigmatising you, discriminating against you. At least I hope it is a passive act and not done knowingly. Because if it were then they would be – a dick.
    I am aware that I am speaking for you to a degree, talking out of my biases, formed out of my experiences of working with people in pain and that in doing so I am making assumptions and that may risk, if I have done this without compassion to you, making
    me
    – a bit of a dick too.
    Kind thoughts,
    Steve

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