The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Is Fibromyalgia A Danger to Chronic Fatigue Syndrome (ME/CFS)?

Discussion in 'General ME/CFS Discussion' started by Dolphin, Jun 6, 2016.

  1. Dolphin

    Dolphin Senior Member

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    Is Fibromyalgia A Danger to Chronic Fatigue Syndrome (ME/CFS)?

    By Cort Johnson


    http://bit.ly/24u9emq

    i.e.

    <http://www.healthrising.org/forums/threads/is-fibromyalgia-a-danger-to-chronic-fatigue-syndrome-me-cfs.4464/>


    Extract:

    Also:
     
    Last edited: Jun 6, 2016
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  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think this is an important issue. Perhaps of interest a study some years ago on rheumatologists' diagnostic practice indicated that the rate of diagnosing fibromyalgia varied by a factor of 100 (or infinity if you count those like me who never made the diagnosis). It seems pretty clear that FM is not a useful category. That is not to say that there is not a problem that it is often used to label - unexplained persistent pain. But there seems to be no value in giving this a 'disease name'. A disease name is useful if you think that cases have some common mechanism but since we know little or nothing about the mechanism of unexplained persistent pain (more or less by definition) there is no particular reason to assume there is.

    We had this brought up at the IiME colloquium in terms of the problem of how one might distinguish the 'disease' of fibromyalgia and the 'disese' of ME/CFS if the diagnostic criteria overlap so much. This seems to me to demonstrate just how muddled people are about what diagnostic criteria do. As I see it if fibromyalgia means anything it means persistent unexplained pain. If ME/CFS means anything it means unexplained exertion intolerance (roughly). It is easy to tell these apart. The fact that these unexplained problems often go along with unrefreshing sleep and all sorts of other things is by the by. These are only relevant once you have the primary complaint and want to know what category to put it in. (Is the pain due to arthritis, or is the exertion intolerance due to anaemia etc.).

    So the problem arises only when the suggestion is that 'your pains are caused by fibromyalgia' or 'your fatigue is caused by ME' - which allows for 'your fatigue is also due to the said fibromyalgia rather than ME' etc. This I think is just doctors getting muddled between cause and effect - as they seemed to much of the time when I was amongst them!!
     
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  3. alex3619

    alex3619 Senior Member

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    As I see it there is a tendency toward making category mistakes. Many treat the categories are real or useful entities, rather than a label, and then reason about the entities as though they were unitary phenomena with consistent properties. I think we will get there, based on biomarkers, but until then there will continue to be muddled thinking.
     
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  4. Living Dead

    Living Dead Senior Member

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    I haven't thought about fibromyalgia as "unexplained pain", nor has it been described that way on the occassions I have come across descriptions. I think that fibromyalgia is
    1) pain with sensitization +
    2) tiredness or fatigue +
    3) brain fog.

    I think that because almost everyone has felt pain, but most people don't "get" the idea of brain fog, and cannot imagine that when people say they are tired they actually have less energy (for real), the pain aspect of fibro has been overemphasized.

    Fibro is distinguished from ME/CFS by the lack of PEM.

    There was a swedish research that showed fourfold (!) levels of IL-8 in fibromyalgia compared to rheumatoid arthritis, which could explain the triad of symptoms.
    http://www.ncbi.nlm.nih.gov/pubmed/22126705 (I think this is the correct report).
     
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  5. alex3619

    alex3619 Senior Member

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    But how many doctors take PEM into account? The point is if PEM is ignored then the patient may get a fibromyalgia diagnosis instead of ME or CFS.
     
  6. alex3619

    alex3619 Senior Member

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    Is CFS a danger to FM?
     
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  7. Mij

    Mij Senior Member

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    Question, does FM also include OI?

    I'm more disabled by OI and PEM. I've never experienced pain with this illness.
     
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  8. Deltrus

    Deltrus Senior Member

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    I have no PEM from heavy exercise, but I often have crashes from light work for multiple hours at a time. I have fatigue/pain/brainfog like cfs/fibro. Does lack of PEM from heavy exercise mean I have fibro and not CFS?

    If we don't know the exact pathology then is there even a point? There is so much overlap and many people with CFS/Fibro have completely random symptoms as well. Perhaps someone's genetics result in them getting CFS while another person in the same situation would get Fibro.
     
  9. barbc56

    barbc56 Senior Member

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    I think pain is the primary symptom of FM or at least for me. However, the word pain is misleading. For me it is a deep achy absolutely draining sensation throughout the body and similar to having the flu with a high temperature. It's not isolated to one spot though there may be areas where you might feel more pain but it's not the other way around. I won't feel, at least when it comes to FM pain, in one spot without the general achy feeling.

    I think this is why the tender point test is sometimes seen as not being useful. It's a diffuse feeling.

    However, the wiped out feeling as well as the brainfog doesn't occur only when I have pain. I have it all the time. It may be secondary but can be just as problematic*.

    Edit * The "pain" can be helped by pain medication. However, nothing to improve the fatigue and brainfog.
     
    Last edited: Jun 7, 2016
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    And are Fibro and M.E. actually the SAME thing or closely related with differnces due to trigger, genetics??
     
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  11. Mij

    Mij Senior Member

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    I also experience this but I wouldn't describe it as pain if someone asked me.. I don't need meds for it and it doesn't affect my sleep. I often wonder if it would be relieved by taking anti-virals.
     
  12. Living Dead

    Living Dead Senior Member

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    Yes, but the alternative would probably be no diagnosis, not an ME/CFS diagnosis.

    I would say, no, by definition.

    No. I think fibro patients have more pain and less fatigue. They dont "crash" like cfs (by definition, if they do, they need a cfs diagnosis). Some patients with CFS don't have pain. I'm pretty sure it's not the same.
     
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  13. Zombie_Lurker

    Zombie_Lurker

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    Then there are people like me who have been diagnosed with both CFS (ME) and fibromyalgia.
     
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  14. u&iraok

    u&iraok Senior Member

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    Interesting. Though I have known and know a lot of people with Fibromyalgia who definitely don't have ME/CFS.

    I rarely meet people with ME/CFS.(Probably because they're at home!) People with FM are out and about and there seems to be so much more of them....And exercise helps them.
     
  15. barbc56

    barbc56 Senior Member

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    From what my doctor tells me most of her patients with FM started with some kind of physical injury and ME/CFS with a virus/infection. Whiplash is supposedly a common trigger for FM.. But there are exceptions such as someone with a health condition and it triggers FM. Some patients have a gradual onset. As @Zombie_Lurker said you can have both.

    I wouldn't be surprised if there is a genetic predisposition. Mine started with a complicated broken arm. I also had a tooth infection about six months before which started going into the bone after a root canal and it took IV plus oral antibiotics to get rid of the infection.. For the first week one side of my face was so swollen my eye was closed But not everyone who has a broken arm, virus, infection gets FM/ME/CFS and I think that's where genetics comes into play.

    I had never in my life felt the kind of pain I get with the FM before I broke my arm as I've only had the flu once in my life.. However, I have had sleep problems since my teens. It became dramatically worse once the FM started. I don't have OI.

    I'm not sure if I have both.

    It's all so complicated and hard to sort out. I do get terrible crashes but they pretty much happen immediately after I overexert myself. I do have to take Tramadol, almost on a daily basis. Other opiods don't touch the achiness but tramadol doesn't help with something like a headache.

    I tend to think they are separate.
    Edit
    I tend to think what you say may be generally true but like me/cfs there's a continuum. It's quite hard for me to get out but that hasn't always been the case. I'm not sure exercise helps physically as for me the problem is that I rarely feel well enough to exercise.

    I see you are in the states. From what I've heard it's much harder to get a /me/cfs diagnosis. Maybe that will change. Hopefully.

    Ya can't win!
     
    Last edited: Jun 7, 2016
  16. Mij

    Mij Senior Member

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    This thing is that some people have both and it can get a little confusing.
     
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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    My Fibro was a slow onset. Over time it got worse and worse.
    An interesting side bar. I recently discovered how I can tell the differnce between my ME and FM (I think I wouldn't skate much on it) but I have trialled Low Dose Naltrexone and while people with ME use it I have found that it seems to differentiate the two for ME.

    I don't use the LDN very much and I use a tiny dose. (When I try to use it all the time it stops working) But my point here is when I do use it I have a better day.This is reflected in my doing more. Normally I find doing anything difficult because of symptoms but when I feel good I can do much more. I have less pain and less fatigue. The catch that I discovered was that although I felt well I could not do as much as I felt quite comfortable doing because of PEM later on.

    I take this to mean that LDN is mostly helping symptoms that are more fundamental to my FM but that the ME is untouched and that I discover my set point for PEM which I don't normally because I'm feeling pain and fatigue that prevents me from doing enough to elicit PEM.

    Hope that makes sense.
     
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  18. dancer

    dancer Senior Member

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    Recognition and diagnosis of ME/CFS may indeed be endangered by the greater "popularity" of a Fibro diagnosis. One of my friends who has ME/CFS was diagnosed instead with Fibro because her doctor "doesn't believe in CFS." The problem is that she is prescribed exercise and physical therapy. Her crushing fatigue and PEM is put down as the "tiredness" that the Fibro TV commercials mention. "The constant pain made me tired. My doctor agrees doing more is good for me..." blah blah blah.

    I'm happy that those with Fibro are getting some recognition and a few treatment options (though I realize none are ideal). But lumping ME/CFS into the umbrella under Fibro means continued suggestions that may help Fibro patients, but be contraindicated in ME/CFS.
     
  19. Living Dead

    Living Dead Senior Member

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    What points to fibro being a separate and specific illness is the peculiar choice of recommended painkillers (Lyrica, Flupirtine, Duloxetine, Tramadol).

    These have particular aspects in common:
    NMDA blocking: Lyrica, Flupirtine, Tramadol
    Blocking of ion channels: Lyrica (calcium), Flupirtine (potassium), Duloxetine (sodium).

    Not that I have any proofs that these are the ones that actually work the best for patients, or even are used the most.
     
  20. panckage

    panckage Senior Member

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    For me CFS and Fibro are one and the same. Both times I've had CFS fibromyalgia faded in a few months after the first CFS symptoms started. The fibro then waxes and wanes on a several month period. The 10 years my CFS went into remission so did the fibro.

    The unique thing about fibro pain is pressure is painful but as soon as the pressure is removed the pain goes away really quickly (eg. Pain on places that contact my bed but it goes away as soon as I stand up)
     
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