Fibromyalgia: Time for the rheumatologists to hand over?


ResearchBlogging.org

The American College of Rheumatologists developed diagnostic criteria for fibromyalgia in 1990, the culmination of many years of debate and disparagement of the existence of this pain problem.  At the time, it was thought that it was a rheumatic complaint due to the presence of body pain and soft tissue tenderness, so the diagnosis and management of it was firmly in the rheumatologists camp.  Research over the last few years shows that it is in fact a pain syndrome centered in the nervous system. Two rheumatologists now suggest that fibromyalgia should no longer be managed by rheumatologists and it should be handed over to…primary care physicians.

The information above is drawn from an editorial by Shir and Fitzcharles, in The Journal of Rheumatology 2009; 36:4.  What does this startling suggestion mean really?

There are several points that this editorial makes:

  1. Fibromyalgia is no longer a diagnosis of exclusion, and diagnostic accuracy by GP’s has improved significantly (at least in the US)
  2. Exclusion of serious rheumatological or other disorders seems to be carried out quite effectively by GP’s
  3. Few investigations are needed to increase diagnostic accuracy
  4. ‘Successful management necessitates approaching the patient as a whole biopsychosocial being, with treatment strategies directed towards physical and psychological complaints within the context of family and society.’

I’m not going to argue with these points at all,  but I am going to suggest that leaving the management of fibromyalgia simply to the family physician might not be the best thing for the person with FM.  I don’t doubt the clinical skill of GP’s, and I think they are the best group to diagnose FM – but managing FM isn’t a single-clinician job.

While GP’s certainly know how to diagnose, and can prescribe the majority of medications used to manage fibromyalgia, my worry is that the rest of the management is not a medical task.  In fact it’s a biopsychosocial problem, as the 4th point above makes.  IMHO GP’s don’t have time or access to services in the community to help people with fibromyalgia to live well, it takes a team to do this.

If I had a wand, or the ear of a health funder, I’d be suggesting the formation of community-based teams of health providers consisting of occupational therapists, physiotherapists, psychologists, nurses and social workers.  I’d be asking them to work alongside GP’s, (perhaps even in the same buildings!) so that people being seen by the GP could then be included in a team approach to help them develop active coping strategies to live well, despite their health problems.

Now, as it happens, I don’t have the wand or ear, but I can hope.  As Shir and Fitzcharles state:

…the pathogenesis of FM is now firmly centered in the nervous system, and FM
is not a musculoskeletal complaint. Optimal patient management
requires attention to the many symptom components
of FM in addition to pain management. Patients with
FMwill also require prolonged care with continued tailoring
of treatments, as symptoms are likely to change over time.

Maybe one day soon my dream of community-based interdisciplinary teams to help people be well despite pain (or other chronic health problems) will be realised.  The sooner a biopsychosocial approach to managing these problems is adopted the better.

Information on fibromyalgia can be found here for a New Zealand site, here for a US site, here for another US site, and here for an Australian site.

If you’re a person with fibromyalgia, some caveats about anything on the internet:

FM has been a wonderful thing for people who sell so-called ‘cures’.  It’s such a diffuse problem, has been questioned for years by the medical community, is often not clearly diagnosed, and changes its presentation often – so people who are either unscrupulous, or are credulous can go about selling all sorts of potions, pills and gadgets for the ‘cure’ of the disorder.

FM doesn’t respond to very much, it’s a chronic central nervous system problem, and living with it means learning how to LIVE with it, not fight it, defeat it, or beat it.  It won’t just disappear of its own accord, and it won’t disappear because of some herbal, crystal, magnetic Thing.

Be sceptical, ask for evidence and don’t accept anecdote or endorsements as evidence for the power of any treatment.  Self management is really the only way to live well with FM, although some medications can help.  Here’s a good site for learning about self management for FM, and here’s a brief overview of a study about how self management can improve the outcomes of exercise in FM.

SHIR, Y., & FITZCHARLES, M. (2009). Should Rheumatologists Retain Ownership of Fibromyalgia? The Journal of Rheumatology, 36 (4), 667-670 DOI: 10.3899/jrheum.081073

13 comments

  1. No joy for 99.9% of G.P ‘s in Southern Africa – only a handful of Rheumatologists really know how to Tender Point here anyway – still the ONLY DIAGNOSTIC TOOL, although the 11-18 1990 tender points have altered – some FM’s have as little as 7 and as many as 24 tp’s.
    The problem with the article is that MD’s are taught Scientific, Organic Medicine and NOT ‘FUNCTIONAL MEDICINE’ – this requires a team working with the patient to be – 1 a Clinical Nutritionist, 2 a Stress Management Integrative dr/consultant 3 trained in either CBT/NLP 4 for pain control- rehab physiatrist/myofascial chiro/Bowen/Feldenkrais/Craniosacral therapist (to help release triggger points from the myofascia), 5 an Antiageing supplemental advisor, to name just the most essential Functional Medicine-trained people-as this is THE BANNER THAT FM FALLS UNDER, AS DOES CFS AND ADRENAL FATIGUE. ME -CFIDS is another story entirely – this can be handled slightly by GP’s- if they CHOOSE to have learned about our conditions! Good cop-out for the rheumatologists -wonder what the American College of Rheumatology will have to say about this! Will post a comment when I am informed. Meanwhile, from someone who is in remissionfor 17 years, does practice Functional Med, eats-her-eat, talks-her-talk and walks-her walk, there is so much help and hope out there – forget the medical world unless you need endocrine blood/hair/urine testing, and find the Integrative guys and gals who really DO know so much more, esp as they CHOSE to SEEK AND LEARN about us!!! Sharon Levin South Africa Johannesburg and Natal. http://www.fibromyalgiasa.co.za. fmssha@ibi.co.za

    1. The only problem I have with your suggestion is that I can’t find any scientific evidence to support your view that nutrition and feldenkrais/bowen or indeed any hands-on therapy has any lasting effect. When there is evidence that can be found in peer-reviewed authoritative texts, then I’ll be happy to blog about it – until then I’m not prepared to endorse it.

  2. Time to get back to you is now March 2010 -look up sites ROBIE/JOE VARRY/JACOB TEITELBAUM/ST ARMAND/PROF MAJIB ALI/DR DEVIN STARKYBYL et al another 19 names I work with -PEERS – guess I am not the one to ‘endorse’ anything – work with the best researchers in world. You just have not gotten there yet. http://www.fibromyalgiasa.co.za

  3. Above should read JOE BARRY sorrry.=not the foodie.supplement guy but the one who overcame WITH MIND/BODY work! Also nothing you would have been tught about at med school. Thus the word ‘FUNCIONAL’ medicine – applying to illnessesthat DYSFUNCTION THE BRAIN AND BODY. It remains an 85% shared-responsibility to ‘take ones life back’ – holistic is the trialed and tested way to go Ma’am. www;fibromyalgiasa.co.za

    1. Hi Sharon
      Thanks for getting back to me. I’ve briefly looked up some of these researchers, and yes they have published in peer reviewed journals. When there is a peer-reviewed RCT of this approach then I’d be more than happy to blog about it. Provided that the research is carried out using adequate scientific methodology, and there are no assumptions of ‘mystical processes’ I’m very happy to look at covering it, although my focus is on psychological or psychosocial strategies. cheers
      Bronnie

      1. Hi Casey, the literature I’ve reviewed doesn’t support the concept of inflammation as part of fibromyalgia. If that were the case, anti-inflammatories would have an effect, and by and large, they don’t. FM seems to be a neurochemical/neurobiological disorder and does respond (at least a little) to medications that affect neurotransmission, so you’re correct that serotonin does seem to be part of the picture, but not entirely. It’s a complex disorder, and we don’t yet understand it entirely.

  4. I read this opinion piece with interest. As a practicing Rheumatologist I must share with you my feeling that this piece is simplistic and misleading. FM is NOT established as a central nervous system disorder! In fact, there is a large body of scientific information showing that FM patients have a significant peripheral component to their disorder. They do have, of course, central amplification of their pain JUST AS EVERY OTHER CHRONIC PAIN CONDITION HAS.

    Please don’t mistake this short sighted opinion /fluff for science, or even scientific opinion. FM patient’s benefit most from treatment of their PERIPHERAL disorder. That is , their musculoskeletal problem!

    1. Hi Scribedoc,
      Thanks for your thoughts on Fibromyalgia. I’ve heard it said that FM has a significant peripheral component to their disorder before, and like you’ve indicated, there is a body of scientific information suggesting that management of this aspect of FM pain is helpful. I couldn’t find support, however, from guidelines on the management of fibromyalgia. This from Hauser, Thieme & Turk (2010) “Both APS and AWMF assigned the highest level of recommendation to aerobic exercise, cognitive-behavioral therapy, amitriptyline, and multicomponent treatment. In contrast, EULAR assigned the highest level of recommendation to a set of to pharmacological treatment. Although there was some consistency in the recommendations regarding pharmacological treatments among the three guidelines, the APS and AWMF guidelines assigned higher ratings to CBT and multicomponent treatments. The inconsistencies across guidelines are likely attributable to the criteria used for study inclusion, weighting systems, and composition of the panels.”
      None of these guidelines supported treatment of peripheral aspects of the disorder – and as someone who has FM, I’d find it a challenge to have every area of pain injected or infused, given that the pain so often travels from one part of my body to another. Can I respectfully suggest that fibromyalgia may well have aspects of peripheral nociception, and these should be managed effectively, but at some point it may be far more useful to focus on central mechanisms and treatment processes that encourage acceptance and graduated activity. The profession that delivers this set of interventions doesn’t matter nearly as much as the empathy and commitment to helping a person with FM live as rich and full a life as possible. I’d argue that any medical professional can do this, but it’s more likely to happen with a nonmedical clinician.

  5. Dear adiemusfree – (I am including links in this post – as I don’t believe in talking for the sake of plugging my opinion based upon nebulous science, nor do I approve of aggression in some of these posts – I’ve had one from one of your posters…) In a nutshell: am on my way to freedom from fibro – first being treated by a Barbara Ann Brennan Healer (The University was founded by an ex NASA scientist and is an accredited Edu Degree) and now after discovering EFT (Emotional Freedom Technique) I qualified as an EFT practitioner. Have a look at my website – http://www.tibbles.co.za and at the ACEP official site: http://www.energypsych.org/. Check out clinical studies published in APA’s journal. Published: http://www.tibbles.co.za/library/research-published and in the process of being published: http://www.tibbles.co.za/expert-opinions/dr-david-feinstein-ph-d: More on EFT and the APA can be found here: http://www.eftuniverse.com/index.php?option=com_content&view=article&id=9250:american-psychological-association-standards-and-eft&catid=992:blogs

    Another very, very interesting phenoma is the developments (patented) by dr Norman Shealy (an ex neurosurgeon) who devotes his life to pain management – without the drugs. His Shealy Pain Pro device is unique – and all doctors who want to treat patients with fibro should have this device! And there is nothing hocus pocus about this – it is based upon pure science. Doctors should educate themselves about working in a team – drugs can help as in a crisis – but it is no long term fix. Check out Dr Shealy’s sites: http://www.medicalrenaissance.net/medical-renaissance.html and http://selfhealthsystems.com

    And of course I agree that the field of fibro no longer ‘belongs’ to the stratosphere of rheumatologists! Drugging consists of: sleeping tablets which is then countered with the anti-depressants, and the anti-flammatories simply do NOT work. I’ve walked that road…… But the pharmacalogical companies are making massive bucks from drugs.

    Below I list the contents page of my eight week fibro ‘changing your life’ course. Lots of deep work (almost tearless…) and the end result is a tool for life and mostly free from pain and exhaustion. It gives fibro and ME sufferers a TOOL for LIFE. My work is based upon the groundbreaking work of Rue Hass, EFT Master.

    Themes of this Healing Process
    How does EFT work?
    The Cage
    The Cycle of Chronic Pain
    Mapping the Healing
    Letting a Caged Spirit Fly Free
    Mending a broken heart
    Healing and Re-Empowering a Sensitive Temperament
    Reframing Sensitivity
    Open the Cage of Anger and Pain
    Open the Cage of Feeling Invisible
    Open the Cage of Fear
    Open the Cage of Overwhelm
    Open the Cage of “I Have to Be Perfect!”
    Honouring Your Dark Angels
    Bibliography and Resources
    Soul Sailor – an inspirational poem by Daria Justyn

    You can contact me at: elm@tibbles.co.za. Would love to hear from you!

    1. Thanks for taking the time to comment on the Healthskills blog. I’m not aware of peer-reviewed studies looking at the effectiveness of EFT, but you’ve given me some to look at, and I’ll follow this up. I guess my one anxiety about this approach is that it moves fibromyalgia from being a problem of the periphery (eg rheumatological problem) to one of the psyche, when maybe it’s really a biopsychosocial problem.

      1. Hello there, I am from Gauteng, South Africa, (Johannesburg) , I have suffered from Fibro for 14 years now, I have been to S Levin and numerous Dr”s healers etc and nothing has worked, I am really chronic now and I walk with a walking stick and also my friends help, I have trigger point physio done every 2nd week, I have become so socially anxious now that my muscles just freeze and I can’t walk, I have fallen so many times as my body is so ridged, Lucky my calcium seems to be fine as I haven’t broken anything . I find Xanor helps, also anti-inflammatory’s do help me and muscle relaxants, My GP has put me on Deplin.I wish there was a Dr in South Africa that was a bit up on Fibro. Debby

  6. Thank you for all this information it is so important. I absolutely hate my disease and everyday used to be a struggle to get out of bed. I’ve tried everything I could find and it all came down to diet and yoga for me. I haven’t beaten or cured my fibromyalgia but I keep it subdued. Here’s the website for the dietplan I follow http://bit.ly/2esk8Ka . Hope it helps you as much as it’s helped me

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s