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Should Rheumatologists Be Treating Fibromyalgia? And If Not, Then Who?

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Regarding the article reporting on a physician survey published May 2 in Clinical Rheumatology – see “55% of rheumatologists in Ontario think fibromyalgia is psychosomatic; 71% don’t think rheumies should manage it” – ProHealth readers commented that:

Something is Going on That is REAL

I was diagnosed with fibromyalgia in 2007 after years of struggling. In 2008, I had a sleep study and did not have (significant) apneas. But last year, I reluctantly agreed to a retest… thought I had been down that road. I got a sleep apnea diagnosis. I have been CPAP compliant since July 2011 and my roving nerve pain is gone, some daytime fatigue remains. Mom has a fibromyalgia diagnosis and has osteoarthritis all through her. She had an emergency laminectomy (a month after MRI). She has sleep apnea (recently diagnosed).

Point being: Something is going on that is REAL. When Moldofsky took healthy folks and deprived them of sleep (1970s), they developed fibromyalgia-like symptoms. I feel some sleep problem is central in this… be it apnea, other chronic pain issue disrupting sleep… something. I don't believe it is a coincidence that folks with fibromyalgia tend to have multiple health issues.

Just because it is not well-understood does not mean it is not real. These folks are losing their quality of life. [Doctors] are you there to help or be aloof? Please consider what I have to say. – G

Why Aren't Neurologists the Obvious Choice?

FM is about pain nerve endings and brain signals gone awry. That is most certainly more a neurological problem than a rheumatoid one. – B

My "Guess" is Rheumatologists Got Stuck with Us Because They Deal with Pain.

And not much else 'bout FMS was known. Assuming they remember their regular med training (I know, big assumption), they should I'd imagine be as capable as the average GP.

That said, in my opinion it's more about being willing to actually give decent care – personally I wouldn't care if the doc was a podiatrist if s/he provided that care. I don't expect my doc to do the research – just be aware of it & willing to consider the treatments, etc. – M

The Family Physician? Seriously?

If fibromyalgia were "indeed" a psychosomatic illness, do they think a primary care doctor would be competent and/or have the time to deal with it? I find this very discouraging and angering, actually.

I have also found it to be true with my experience with the 2 rheumatologists I have had. They are excellent at treating my juvenile arthritis, but do not believe in fibromyalgia. They say I am "just depressed." What absurdity! I am thankful I have found help from that VERY different kind of pain from other professionals.

I agree that neurologists should be involved, and possibly endocrinologists, if they could ever stop believing that all they have to treat is diabetes. But I guess that's where the money is. – J

Whomever is Willing to Give Care Should be Allowed

I've had terrible, terrible experiences with specialists in different fields of medicine – they've truly been equal opportunity offenders – but the few that have actually tried to help weren't in the more expected disciplines.

Years ago a Pulmonary specialist, who'd been called in on a consult during a bout of pneumonia, turned out to be really great & was the doc directly responsible for the diagnosis of CFS/ME – FMS. He went out of his way to learn, contacting the CDC etc.

The Neurologist that called him in for the original consult, on the other hand, could fill the starring role in a horror movie. [My] coughing brought on what appeared to be seizures and the ER assigned me to the neurologist. During an EEG I went into very severe seizure-type behavior (causing lots of bruising etc.). He said according to the EEG it wasn't a seizure so not his problem & walked out. Of course I was still bouncing around, injuring myself… later that day I lost my front teeth to the bed rail.

And I had to fight with the insurance company for 6 months afterward since this neurologist told them it was completely psychosomatic & they shouldn't pay a dime. – M

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2 thoughts on “Should Rheumatologists Be Treating Fibromyalgia? And If Not, Then Who?”

  1. IanH says:

    Even when FM is not a symptom of ME (which it is often) it is a multi system illness.

    Most people with Fm have mitochondrial myopathy, immunological dysfunction in nervous system as well as other systems, digestive tract imbalances as well as neurological disturbances.

    Currently I would not feel confident with any Medical Specialty, because of lack of knowledge, bias and a tendency to use duloxetine in treatment. Medical Practitioners generally are out of date and not willing to (fearful?) consider nutritional (nutriceuticals) solutions and are rarely able to work with the patient to find solutions (dictatorial).

    My current status is about 85% normal function after 15 years of ME with FM and complete disability on the following treatment:

    acetyl carnitine 500mg TD
    CoQ10 200mg TD
    methyl cobalamine 3mg TD
    folinic acid 800mcg TD
    magnesium citrate 200mg TD
    vitamin D 120 mcg TD
    vitamin K2 (K4+_K7) 100mcg TD
    curcumin 10mg TD
    vitamin P (PQQ) 10mg BD

    It took:
    six weeks to establish normal energy (startling compared to what I was)
    four months to eliminate all bi-lateral pain (with the exception of pain in wrists)
    at three months I began a more vigorous exercise plan
    currently I have no diarrhea, much better cognition, no tremor and better balance and gait.
    I am working everyday 10am to 5pm

    I would be interested to hear from others who have used this regime, successfully or otherwise for either FM or ME or both.

  2. herenow23 says:

    Aloha,

    No, it doesn’t have to be a rheumatologist in my opinion.

    Patients must do their best to find a physician who understands that these types of disorders are not a product of how an individual thinks, that’s step one. We need open minded/curious practitioners who are willing to do their job regardless of their specialty.

    Ideally it is helpful to have a physician who has some experience and that generally means out of pocket costs for us. Even then it doesn’t guarantee that you are not going to better off in terms of treatment, but what it might mean is that someone is going to listen and the patient will feel validated.

    And just having a physician who is experienced enough not to add insult to injury and take a patient down the dead end road of “harmful” long term prescriptions. However, it is best in my experience that if prescriptions are required, then that physician should have the ability and courage to prescribe when needed.

    I could go on, but my guess is that this community knows all of this by now and then some.

    Healing :)))

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