Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Fibromyalgia and its relation to ME/CFS

Discussion in 'Fibromyalgia' started by greybeh, Nov 8, 2009.

  1. greybeh

    greybeh Guest

    I have begun to wonder if some patients get diagnosed with fibromyalgia because it's more "acceptable" than an ME/CFS diagnosis -- in the sense that doctors are more willing to treat the symptoms than they are ME/CFS patients.

    I pray I don't offend anyone. I have fibro.

    I want to better understand ME/CFS but I don't know what questions to ask. I want to read about what symptoms you deal with but I'm still finding my way around the forum. I read a lot about XMRV and until now have been too tired to do much "exploring" here.

    Been a bit shy, too. Hoping I'll fit in here. You are an amazing bunch of people.
  2. bee33


    I don't have any answers, and I'm new here myself, but welcome!

    I have been diagnosed with fibro, even though I had to basically tell the doctor that it's what I thought I had, and he had to take out a book that described the tender points, and then I had to find them for him... But my most disabling symptom by far is fatigue. I believe I have both CFS and FM. There seems to be quite a bit of overlap.
  3. starryeyes

    starryeyes Senior Member

    Bay Area, California
    I came down with CFS in 1985. I had pain with it but nothing like severe FMS. I was mostly very ill and I had become that way after coming down with a flu that seemed to develop into Mono and I was never the same. In 2000 I sprained my back and developed severe FMS and there is a world of difference. I never had all these different kinds of pains in this intensity before and I never had tender spots before and now I have all 18 and more really. There are many differences between the two illnesses. Just look at the symptoms side by side. I'm a text-book case of both now.

  4. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    CFS and then Fibro

    Similar to you, teejkay, I came down with ME/CFS in 1982 with not a lot of pain involved. In 2001, a very minor auto accident — I was rear-ended — led to a tweaked muscle in my mid-back which in turn led to much pain all over including tender points. I've since been diagnosed with FM. (Also chronic Lyme disease which is still under debate.) I have begun to wonder how much going through perimenopause at the time of the accident contributed to my developing FM.

    I have many ill friends with ME/CFS and FM but only one who has what I think is "pure" FM, not at all to say that FM by itself isn't just as difficult. But what helps her is consistent exercise. She doesn't have the post-exercise crashes.

    Often a general practitioner will diagnose ME/CFS and a rheumatologist will diagnose FM. I think sometimes the difference in diagnosis is what kind of doctor you see. However, to have FM, you need to have the tender points which aren't part of the diagnosis of ME/CFS. There seems to be a huge overlap of both of these illnesses. It is interesting that WIP found XMRV in some FM patients. We'll have to wait and see what comes of that in the future.
  5. Mikie


    Our Illnesses Are Difficult To Pin Down

    It seems to me that some of us have what they call, "Primary Fibromyalgia." In other words, the symptoms the patient has all fit into the criteria for diagnosing FMS. For others, FMS came secondary to some other illnesses, like CFIDS/ME, Lupus, MS, etc.

    Because there can be so much overlap of symptoms, it can be difficult to sort it all out. I can look back in retrospect and see early signs of FMS symptoms--fatigue, "growing pains," easily overstimulated, etc. It wasn't until ten years after my CFIDS/ME was triggered full blown by a mycoplasma infection that my FMS showed up full blown, following an auto accident.

    There are so many "chicken 'n egg" questions when we have multiple diagnoses. Which came first? Are we genetically predisposed to get FMS? Can it lie latent until some other condition triggers it?

    Many of us experienced onset in different ways, both of the FMS and any other accompanying condition. Sometimes FMS follows other types of trauma, stresses, infections, or exposure to something toxic.

    FMS can run in families and that makes me believe that there is some kind of genetic factor involved. My Mom had FMS, I have CFIDS/ME and FMS, and both my daughters have FMS. That would make it appear that we are genetically predisposed. On the other hand, did something happen to one of our ancestors which altered the genetic makeup to cause us to be predisposed?

    I better stop before this gets even more confusing. I've been sick for a looooong time and I still don't have any answers. The more I ask, the more occur to me.

    Love, Mikie
  6. Mark

    Mark Former CEO

    Sofa, UK
    Think 'icebergs'...just another of my theories...

    We don't know exactly how many FM patients were in the test, but I think we do know they tested just as positive as the CFS/ME patients.

    The key thing to realise here, I think, is that FM, CFS, ME, MCS, IBS and, I suspect, Gulf War Syndrome too - none of these really exist any more. Not in the old sense that they are all modern imaginary illnesses, but in the new sense that they were only constructions, syndromes, attempts to categorise symptoms - what actually exists is XAND. These different diagnoses from the past were merely artificial definitions of particular symptom patterns, each with their own peculiar emphasis. All this is going to take a lot of mental adjustment for everyone, and some sacred cows may have to go.

    In other words, my guess is that XAND is pretty much the answer to life the universe and everything for all idiopathic conditions like this. Since XMRV seems to even cover non-genetic autism, surely it will take in loads more stuff as well? Since it's already pretty clear that XAND is wider than CFS, and we've so far seen just a few bits of the iceberg, the principle of Occam's Razor means I'm expecting XMRV to explain everything idiopathic like this until I see evidence that it does not. I even expect it to cover many or most of Wessely's and Reeves' patients by the same logic, so the legitimate campaigning issue of the separateness of CFS from this larger group defined by CDC may be one of those sacred cows I mentioned.

    In this sense, the CDC could be proved kind of correct in their definition! Put it like that actually, and the CDC will come out of it better in some respects if their entire group test positive! The cohorts with the highest percentages of XMRV will be from those conditions with the best definitions. We'll be able to judge and compare Fakuda vs Canadian vs Oxford on the basis of the numbers: the worst definitions will be those that included too many irrelevant patients!

    My knowledge of Fibromyalgia is that it exists as a definition primarily because of this clear diagnostic test with the pressure points that can't be faked. I expect that particular symptom is just one of a very long list of symptoms that can be caused by XAND, one that happens to be amenable to a tight and unambiguous definition, and my latest theory is: which symptoms you get depends on which specific cells are infected with XMRV.

    There will probably soon follow a meaningless attempt to subdivide XAND based on symptom patterns, but I expect the truth to be: here are 100 symptoms you might get due to XAND, and any individual with XMRV may have any 0-100 of these symptoms.

    I'd be very interested to know if this chimes true with anyone, and whether the FM people feel what I've said about FM is reasonable. A particularly interesting question would be: which things described on this CFS/ME board do NOT fit in with the FM experience? What are the differences?
  7. bee33


    Mark, I think you're definitely onto something. What you say makes a lot of sense, and I suspect that you are probably right: XAND is the underlying disease, and the symptoms it causes will vary from person to person. (Not unlike HIV, which manifests as whatever opportunistic infection takes advantage of the body's immune deficiency. Before HIV was discovered, some AIDS patients were dying of rare cancers like Kaposi's sarcoma, others from pneumonia, but they did not have different diseases, they all had HIV.)
  8. starryeyes

    starryeyes Senior Member

    Bay Area, California
    I think you're probably right too Mark. Can you send in your thoughts in to the WPI? I hope they're thinking along those lines too. I just watched And the Band Played On last night which is about the discovery of HIV and the beginning of the AIDS epidemic and I feel even more certain about what you are saying today. It would sure explain everything.

  9. leelaplay

    leelaplay member

    Canadian Consensus Documents on Fibromyalgia and ME/CFS

    hi greybeh - what an interesting question!

    In case you don't know, I'm a Canadian. I was diagnosed using the Canadian Consensus Document(this link is to the full document published in the Journal of CFS - pg 18 - 115).

    In looking for a quote today I noticed that Dr Peterson, Dr Klimas, Dr Lerner and Dr De Meirleir were among the 12 international expert authors. As well as being experts in the field, they reviewed over 400 I think research papers on ME/CFS.

    A simplified form was put out for doctors: clinical case definition and guidelines for medical practioners, only 30 pages or so - lots of charts, bullets, lists of symptoms, ..... -I LOVE it as it is so easy to read and so comprehensive. The most accessible info I've seen in 8 years.

    My understanding is that many patients have both ME and FM, but I can't remember the %age right now.

    There is also a Canadian Consensus Document for Fibromyalgia that was published in the Journal of Musculoskeletal Pain 11(4):3-107, 2003 and a nice 30 pageish Fibromyalgia: clinical case definition and guidelines for medical doctors.

    I can't recommend those highly enough.

    Well - welcome to participating more in the forum! There's no future tense there, you fit in now.

    I agree re the amazing bunch of people. The level of intelligence, wisdom, creativity, talent, warm-heartedness, curiosity, pragmatism and respect still astounds me.

    I hope that's helpful


    PS I tried to cc a graph here to show how easy to read it is, but my adobe skills aren't up to snuff
  10. greybeh

    greybeh Guest

    islandfinn, this is helpful. I still see some incredible overlap. My mother has fibro & CFS, and I believe I might also.

    I cannot help but compare to what you've posted because I cannot read about it and ignore the significance a lot of these things have for me.

    Looking at the Diagnostic protocol/clinical working case definition of ME/CFS -

    Fatigue: People talk about the way I 'used to be' -- I 'used to' always be on the go. I've been staying in. Some days, in and out of bed. I still work full-time. I have a desk job in which I can usually pick-and-choose what tasks I do throughout the day. In the evenings, I cannot even cook for myself -- I rely on frozen dinners and quick-fixes. I remember a time before I had meds when I went to work and barely made it home and collapsed into bed until the next morning when it was time to do it all again.

    Post-exertional malaise: I don't know. I know I used to exercise 3-4 times a week for 30-45 minutes and I lost 175lbs through diet and exercise. My problem started when I told the doctor I couldn't do it any longer and felt like I'd been "hit by a truck" (fibro-description). Doing simple tasks takes more energy than it ever used to. I've re-gained most of the weight I'd lost before, much to my despair.

    Sleep Dysfunction: I'm on meds for sleep. Used to feel like I barely slept. The clock said I'd slept for 8 hours, I felt maybe I got 3-4 hours, if even that. The clock was a cruel joke to me -- it didn't feel like that could be happening to me.

    Pain: stabbing, stinging, aching, burning, spasms and compression-type pains, tingling, "creepy-crawlies" -- it moves around. It was so hard to describe to a doctor because pain used to be something I could consistently "point at" -- used to be predictable. Headaches: back of my head, front of my head, stabbing eye-pain headaches, now: ocular migraines without the accompanying pain. Headaches that stay with me for a week or a few weeks. I never used to be headache-prone.

    Neurological/Cognitive: can't concentrate, often forget what I came in a room for (reguarly!), inability to follow simple instruction or multi-task despite having a college degree, can't remember names/faces, having to write everything down and even what step to do next, etc (I can't visualize a finished task or what it takes to get there), word substitution ("vaccuuming the lawn"), getting lost in my hometown of 17 years, convergence insufficiency (inability to focus vision?), bumping into walls or corners, light sensitivity, noise and physical sensation "overload", feelings of being physically drained by excitement, fear, anger... Avoiding highly emotional people and situations.

    Autonomic: diagnosed orthostatic drops in blood pressure leading to feeling faint, some intermittent bowel issues that were diagnosed IBS and then colitis

    Neuroendocrine Manifestations: a body temp that's normally 97 degrees, "hot flushes," night-sweats, "mild Raynauld's," worsening symptoms with stress (which may also be accompanied by an unexplained rash on my chest which the allergist wants me to have biopsied next time it happens because he's clueless!)

    Immune Manifestations: this is not clear-cut for me. I have allergies and asthma which makes me very prone to sinus infections. I cannot tell if swollen glands are notable or part of other infections. I do have multiple allergies but I just came up negative for a 29 patch skin test on chemicals.

    Persists at least 6 mo. and distinct onset: I've been sick since at least 2002 or 2003 with varying symptoms. At one point in 2002/2003 (can't remember), I had -- (in an order I cannot remember): an illness that I thought was food poisoning (fever/chills, vomiting, diarrhea, whole-body pain and the stress set off my asthma) - I couldn't eat normally for weeks even maybe 2 months afterward and I felt weak, I had bowel symptoms and tenderness which prompted docs to rule out gall bladder illness and then call it Irritable Bowel Syndrome. I became unable to exercise and very fatigued.

    I don't know what to make of it, really. So much overlap... It's really hard not to look at this without considering your own experiences.

    Co-moribidities: (FMS?), TMJ (w/ bruxism), IBS, Raynaud's, Allergies, depression related to physical limitations & intensification of pain/fatigue/cognitive symptoms

    THIS was new to me: approximately 75% of ME/CFS patients exhibiting positive FMS tender points (49)

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