Fibro is NOT a disease

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by jaminhealth, Oct 20, 2012.

  1. jaminhealth

    jaminhealth Well-Known Member

    I hear this from Dr. Darrow every time I listen to him on the radio on weekends....(website URL removed by moderator) is his site...Two people called him today with the FMS, and one did admit to sleep apnea...

    I don't believe it's a disease either, I've never said I have a disease....with the FM and OA issues..

    Fibro is a syndrome of so many things gone wrong, widespread pain thru the body.

    Sleep is huge.
    Thyroid and Adrenals.
    Hormones.
    Nutrition.
    Weight Issues.
    [This Message was Edited on 10/20/2012]
  2. freida

    freida Active Member

    Maybe it is, and maybe it isn't.

    These are theories or opinions,
    not facts like your post seems to say.

    Much is still unknown,
    and conflicting medical views always come long before
    ANY disease or condition is figured out.

    Most illnesses are thought to be not actual,
    until it is discoverred and proved that they are.

    We simply don't know yet, what they will find out about fibro, or about severe CFS.

    Please label it that drs opinion and your opinion,
    but not post title like a proven fact.

    OUt of respect for those of us who do not beleive that enough is known yet to prove it.

    You may think that one dr or some research or some drs proved it,
    but there are a lot of drs out there with many theories.

    So some of us think it is not proven yet, one way or the other.
    We've addressed other issues and are still sick, we don't know why and have not found a dr who does.

    Time will tell,
    what we cannot know at this time.
    [This Message was Edited on 10/20/2012]
  3. jaminhealth

    jaminhealth Well-Known Member

    around for many decades, my grandmother and mother and aunts had what was called rheumatism, then years later it was called fibroitis and in recent years fibromyalgia...hence the drugs on tv for the FM. Back then so much wasn't addressed, like thyroid and adrenals and the sleep. I don't know that my mom and aunts ever took a thyroid support...I've always said thyroid is big in this syndrom.

    Today, we seem to know so much more thanks to these groups and people are addressing so many issues, and many are improving.

    I just went into PH's library and read their definition of FM and the word disease was not found, disorder Yes.[This Message was Edited on 10/20/2012]
  4. TigerLilea

    TigerLilea Member

    FM has nothing to do with weight, thyroid, adrenals, etc. etc. If you were to tell my sister-in-law that they were, she would bite your head off. And rightfully so. She was injured at work and everything happened from there. According to the FM specialist that she sees it is a neurological problem. She was not over-weight and was in good health up until the day she was injured. Unfortunately for her, her FM is getting worse as time goes by and she is able to do very little anymore.
  5. TigerLilea

    TigerLilea Member

    In the past several disorders were labeled as being "Rheumatism", however, today they each have a distinct name given to them; rheumatoid arthritis, osteoarthritis, lupus, fibromyalgia, and tendonitis. Jamin, I know several people who have been diagnosed over the years with a thyroid problem through blood testing, and not one of them has ever had, or went on to have, FM or CFS.
  6. jaminhealth

    jaminhealth Well-Known Member

    I happen to believe thyroid has a lot to do with FM....low thyroid and PAIN do co-exist. Weight is probably the last, but extra weight doesn't help anything we deal with...

    Having low thyroid doesn't mean one gets FM, but getting optimal support can reduce FM issues.

    My story goes back to 1999 when I believe the FM hit me and I was struggling with what I believed was a sluggish thyroid...everything was knocked out of me with the trauma...finally in 2002 I got on my throid support and things did change....granted I'm much older now and for sure don't struggle with the then depression....

    Oh, believe what you want to believe, I just posted what Dr. Darrow always says about the FM and I prefer not to label myself with a Disease.....labels stick...
  7. sunflowergirl

    sunflowergirl Active Member

    there are lab tests that point directly to something, then it is not a disease but a syndrome. I've been tested so many times for thyroid and lupus but nothing ever shows up. Also tested for adrenal fatigue and everything comes back as middle of the road....no highs or lows on anything. Frustrating.

    My daughter developed Graves disease after she delivered her first....was on meds for over l l/2 years and then it was gone completely. She gets tested all the time but tests come back negative for thyroid but she's always freezing even in the summer. Me......I'm always HOT.
  8. mujuer

    mujuer New Member

    My son doesn't believe in any of it because it is labeled a syndrome and not a disease so as far as he is concerned, it is all in my head.
  9. IanH

    IanH Active Member

    Increasingly when patients diagnosed with Fibromyalgia are examined in more detail or with a different set of tests there is found an underlying pathology which can be used to "label" the disease or explains the widespread pain and other symptoms. This may be because widespread pain is present in a lot of illnesses but also that the widespread pain is difficult to understand in that illness.

    It seems to some that it is a nonesense to say that physical trauma can cause FM or that hypothyroidism can cause FM or that ME/CFS can cause FM.

    We do not know enough about how pain, whether it is hyperalgesia or allodynia (used to test FM in the case of tender points) extends to areas of the body which according to observations should not be in pain. We are starting to find out that the immune system is involved in low level inflammation (not testable by standard clinical inflammatory tests) and in turn, in pain and neuropathy. We know that cognition is a factor in hyperalgesia but that cannot explain many of the recent findings in immunology or in the brain tissue changes.

    The issue about FM not being a "disease" seems correct only on the basis that we do not understand enough about widespread pain but that we should never diagnose a condition called FM if there is another pathology underlying it.

    One question is: Is fibromyalgia more than widespread pain and if fibromyalgia always has an underlying cause/pathology then why use the concept at all?

    It seems to me that FM is useful to wrap together a set of symptoms (more than pain) so that we can help a person understand their illness/condition without resorting to difficult to understand concepts. I believe the concept of FM as a disease will eventually disappear and as said by another poster will be replaced by individual disease entities. However I also believe than widespread pain is a symptom of neuro-immune dysfunction and is present in many pathologies including ME/CFS. Much as headaches are. This long term painful state will also lead to many other symptoms too such as diarrhea, cognitive dysfunction, weakness etc. And the corollary is true, that many illnesses in other system such as inflammatory bowel disease can lead in some people to widespread pain and so on to even more symptoms as a result of the persistent pain. This is something many clinicians in primary care need yet to understand. However with better understanding of conditions such as "post-operative neuropathy" physicians are beginning to see that pain can be generated by physiology that is not obvious at first and we do not need to come up with psychological explanations. I addition the medical profession is under pressure by governments and insurance companies to weed out the bludgers whom it is suspected have infiltrated this "condition".
    [This Message was Edited on 10/20/2012]
  10. Mikie

    Mikie Moderator

    One may have FMS with nonspecific all over pain but in order to diagnose the conditon as FMS, one must have all or some of the tender points, which are mapped on the body, and these points must be present in all four quadrants of the body. In other words, one cannot just have pain on one side. Whether this is a bona-fide method to diagnose FMS isn't even proven. We simply do not know enough. We don't know what causes it and we don't know how to cure it..

    If have "classic" FMS with the tender points in all four quadrants, accompanied by fatigue. There is no doubt in my specialist's mind that FMS is real. I did get CFIDS/ME prior to FMS, which came after an auto accident, and it was triggered fullo blown by a mycoplasma infection. It is often impossible, even for my doc, to separate the symptoms. He draws a Venn diagram with three intersecting circles, one for FMS pain, one for exhaustion and one for intestinal issues. He has found this is the usual situation. I got rid of most of my FMS issus with Dr. St. Amand's Guaaifenesin Protocol. If FMS weren't read, I don't think the protocol would have worked. Like everything else, it doesn't work for everyone and it's not an easy treatment to follow.

    For any of us with FMS, there is no doubt that it exists. Anyone else's opinion is not germane to the issue until research scientifically finds the cause and, hopefully, the cure.

    Love, Mikie
  11. neoplus1

    neoplus1 Member

    Could have many causes or triggers. For some people it is stress. Others it is physical trauma. Others it is tetanis(spelling?) shot. Yes some people with fibro may have thyroid issues. Some may have adrenal issues. Some may have low vitamin d and fixing these things can sometimes resolve the pain for some. Fibromyalgia is a diease. Even when something is a syndrome, it is still a disease because it involves abnormal function of some kind leading to symptomology.

    Seven years ago, I suffered from an autoimmune reaction to an infection called Guillain Barre Syndrome and almost went completely paralyzed. That is a syndrome but is just as much a disease. When you have to use your head against a wall to balance yourself while you urinate into a bottle, you've got a disease. I experienced much DIS-ease. Some of these syndromes are a collection of diseases but therefore are diseases themselves.
  12. Mikie

    Mikie Moderator

    I find that a lot of confusion is caused by words used to describe a condition. If a cause is known, one may call a condition a disease; otherwise, it is a syndrome. I don't even know if this rule is medically official.

    I refer to my problems as conditions and illnesses. They are no less real than if I were to call them diseases.

    No one knows what "causes" our illnesses but they can be triggered by numerous things. Some will swear that what triggered their illness "caused" their illness but that is not known for sure. We do know some of the systems involved in our illnesses. It seems the more we know, the more we realize that there are more unknowns.

    The beauty off this website is that our wonderful members will help with info they have from their own experiences. We often know more than the docs we see. It isn't their fault; our illnesses are just too mysterous at this point for anyone but the best specialists and researchers to have much experience and knowledge about them.

    Love, Mikie
  13. jaminhealth

    jaminhealth Well-Known Member

    or do I feel I have a disease....I have a lot of PAIN. All over, some days and mornings worse than others. Today isn't so bad.

    And, for me, everything has become worse since the Trauma of the hip surgery 2 yrs ago....I know this for sure.

    I often think, where would be today if no surgery, would I be limping more, or even in a wheelchair as I was told could happen if no hip surgery.....so lots of tradeoffs on the pain stuff. No groin pain now....

    I've addressed many issues, hormones for sure: thyroid,
    Vit D, female hormones, and take adrenal support. And, of course, the wonderful grape seed ex has helped keeping me from getting sick/ill.

    And finally keeping white foods out of my body, I'm getting it more and more, NO SUGAR.....jam

  14. jole

    jole Member

    But once everything's been ruled out....no thyroid problems, no adrenal problems, no Lyme, etc. and having been on the Atkin's Diet with no improvement, I really don't care if it's a disease or syndrome. Supplements have not helped. I started down this road shortly after being born...the docs thought it was rheumatic fever, but the tests disproved that, and they never figured it out after all these years.

    So if you're fortunate enough to have supplements, etc. help I'm happy for you. It's simply not the answer for a lot of us. And it upsets me to see 'studies' published with difinitive answers when they still don't know the cause. I also get upset with physicians who diagnose FM without doing a total workup, including brain scans, mri's etc.

    I know two people who say their doc diagnosed them with FM...with no tests whatsoever! Their complaints? They ache when they get cold.....and they work in a hospital lab where the temps have to be controlled to a low temp! These types of people only hurt our cause of finding an answer, and the docs are totally inept.

    Wow...sorry, I went off a bit here :(
  15. jaminhealth

    jaminhealth Well-Known Member

    St. Amand dx'd me in 1999 by touching spots on my body, I went to him for thyroid, he's an endo, and he touched around my thyroid and said NO, it's Fibro!!!!!

    I still BELIEVE thyroid needs to be supported in spite of the so called "normal" labs.....I've always said that here, normal snormal....we are not numbers....In the days before labs, MD's automatically gave people thyroid med (armour mostly) when they came in with all the long list of symptoms, which are also so much in line with FM symptoms...

    I too don't care anymore what it's called but I prefer not to tell myself I have a disease.... I don't like to "own" any of it, so I say deal with or challenged with, etc....
    [This Message was Edited on 10/21/2012]
  16. IanH

    IanH Active Member

    Tender point analysis has fallen into disrepute, as you would expect because it was a load of nonesense to satisfy insurance companies in the U.S.

    Antagonists of the 5-HT3 receptor were thought to be a marker but it is contentious and serotonin abnormality is implicated in many illnesses particularly anxiety and depression.

    When the 5-HT3 receptor is activated to open an ion channel by agonists the CNS activates the nausea and vomiting center in the brain stem and the PNS activates neuronal excitation in autonomic, nociceptive pathways(toxin and pain neurons). In theory, by using antagonists these symptoms can be reduced and in practice this is what happens to a degree.


    Corticotropin releasing factor has been studied as it seems to be related to the degree of pain.

    Pain correlates with degree of oxidative stress and mitochondrial function, there is a CoQ10 deficiency and abnormal catalase,(the enzyme which converts H2O2 to H2O and high lipid peroxidation in blood mononuclear cells.

    see http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0035677


    Also in support of the mitochondrial dysfunction theory there is a glutathione depletion.

    Basically the biochemical markers (admittedly from few studies) are similar to those of ME/CFS and implicate immunological interference with mitochondrial function causing a wide range of symptoms depending on the individuals genetics and tissue status. There have been some studies attempting to delineate FM from ME/CFS but not very convincing. (In my opinion)


    [This Message was Edited on 10/21/2012]
  17. Mikie

    Mikie Moderator

    Have you ever heard of the red crescents in the throats of some with CFIDS/ME? Not everyone has them but I do. My doc said he had never looked for them in anyone else so hadn't noticed them. He did not know what they are or what caused them.

    There are no tried-and-true markers but some of us have similar things to what other have. I've heard of the elevated Substance P in those with FMS. It is possible to have FMS without the mapped tender points but may of us do have them. Some with CFIDS/ME have wasting of the forearms and some lose parts of their fingerprints. This may support the theory of subsets of our conditions. There may be a myriad of conditions falling under the umbrella diagnoses of FMS and CFIDS/ME. Not very comforting for those who want answers but I think it's better to admit how little we know than to think we have answers where there are none--yet.

    Love, Mikie
  18. freida

    freida Active Member

    I don't like it, but I am.

    I have also heard of and read of,
    other tests, such as some type of brain scans, and spinal fluid tests,
    that are showing specifics, that may point to disease markers,
    but those tests are not available for present patients, they are not available widespread or mainstream or to our drs, at this time,
    (not even to my neuro dr who tests for MS and uses regular brain scans all the time)
    they are more in research at this time.

    My illness, after exhausting so many other possible causes, and trying many ways to improve, seems very classic severe CFS , and most likely neurological.
    With fibro resulting....it seems very likely. And I am certain I am not the only one with this illness or likely disease.

    I didn't think I had this illness, and didn't believe it at first. I made many attempts to prove I wasn't. They didn't work. For me, and for many others, they don't.

    It took me years to accept that I am sick and therefore, so far, I am not getting better, (YET)
    by the countless things I've tried,
    or by my careful healthy selection of foods, etc,
    and I still hope to get better,
    but maybe I will and maybe I won't.

    In the meanwhile, for me....
    I AM seriously sick and ill.
    And I most probably have a disease, which they will call that, when they nail down the cause better.

    Denying it for years, gave me hope back then,
    but at some point, made me suffer more.

    I am not saying anyone else here is denying it,
    who is not sick and ill,

    but many here and elsewhere, are actually sick and ill,
    and likely have a disease in my opinion, from what I read that they write.

    I'm just adding that many of us, most, did not want these labels either, but those of us who did not find a way to get better, had to eventually accept them,and do beleive them now,which does help ourselves deal with them.

    I think it isn't good to tell others they are not sick or ill or do not have a disease,
    if they have lived with themself for a lifetime,
    and have reasons to think (or know) that they are.

    I didn't like to think of myself as sick,
    but for me, I AM definitely sick and ill,
    and I needed to admit that,
    so I could accept that my limitations do have a cause,
    that has nothing to do with how hard I've tried to be well or better, and my illness is not fixed by any or all of my healthy lifestyle and foods, or any of my personality, whether or not I have an emotional difficulty or not, as all humans do.

    It is not my fault at all, that I am truly sick,
    and say so, nor does it make me feel like a victim, it makes me deal with my own realities in a way that is fair and respectful to myself,
    like I respect others with the same or different diseases.
    I needed to learn this, and it helps some others who are very sick, to hear it as well.

    Many other brilliant, gifted, motivated and wonderful people get this illness, and are stopped in their tracks, regardless of their other health or no health issues, and like me, they go to many mainstream and other therapies, and do not find any cure...yet.

    Or any absolute test that is available...yet.

    Still, I am sick, even though I prefer not to be and don't like to be, and wish I wasn't.
    And I try to maximize my function, but it is still low.

    I'm very glad for any of you who are not ill and not sick.!!
    Truly I beleive you, I support and respect you, I am very happy for you,
    but your experience is not the same as mine or manyothers.
    I do NOT want you to "admit you are sick" when you are not, or when some other words are better for you. I am all for coping the best way we each do, with whatever condition or disease that each of us has.

    But I am sick and ill and likely have a serious disease, that is related to or is CFS or fibro.

    For those who are, we need support , here, that we know our own bodies and experiences, it is a real illness, I am certain, that some of us do have,
    and we would be better if we could and were not ill beyond our present control, no matter how strong our efforts.
    More will be proved about it, sometime in the future, but we know our realities, now,
    especially if we have had this illness for many years.

    I hope that my writing helps or supports someone else.
    It isn't to be minimized, when someone is so sick and ill.

    I respect whatever info anyone else gives about their own health or illness,

    whoever is sick and whoever is not,

    And whatever someone calls themself and is their own truth or prefered label or non-label.

    They (each one of us) know more than any dr or person who has never met them or had their illness or their disease.

    I wish drs (and others) who have not seen some of us would not dx us incorrectly and misleadingly to others. Like one poster said, this even can cause family members to not help us when we need it.

    I know labels are important, that's why I refused the word disabled for many many years, but now I know I am.
    It's a fact, that I am disabled,proven why or not, and whether I like it or not.
    Which I don't, of course. Most don't.



    [This Message was Edited on 10/22/2012]
    [This Message was Edited on 10/22/2012]
    [This Message was Edited on 10/22/2012]
  19. jaminhealth

    jaminhealth Well-Known Member

    I remember seeing an MD back in 2006, and he's the one who found the Vit D so low and then tested himself and found his to be even lower than mine...he was a good guy.

    Anyway, at one appt we chatted about the tender points and he said "everyone has tender points", I have them myself....

    So.....

    Talking to a friend yesterday she's 85 and has a LOT of her issues and not fm or cfs but a lot of other stuff...I mentioned how short lived my acupuncture on knees was, only got a 1.5 day of relief, and she said be thankful for that short relief, acupuncture takes a lot of treatments, lots...

    Then she said to stop telling the body you are in so much pain....the MIND/BODY thing.... She's right to a big point....


    Leah, you sound good to so many of us with your comments and welcoming new members, etc....I didn't realize you were disabled and so sick....Sorry to hear that.
  20. sunflowergirl

    sunflowergirl Active Member

    No one, including the expert doctors, truly know for sure what brings on FM/CFS, what absolutely will help, and how to heal from it. We're all different so we have to try what we feel is best for us. I for one have suffered for over 20 years. I basically have no life and have to grab a few hours here and there when I feel OK to do the things that will bring me joy.

    Some have it worse than me, some are just starting on this "road" and a few lucky ones have healed more than others. I do know that I've gotten progressively worse over the years, although I continue to try all types of supplements, meditation, some yoga, FM meds, heated pool therapy, almost daily walks (that's really hard to keep up on) and acupuncture recently. I read everything I can, listen to advise that it offered to me, discard some ideas and try others. I have a few nights here and there where I can get 5 hrs. or so undisturbed sleep but then I wake up in terrible pain from not moving.

    I went thru many years of "anger" over what had happened to me, but I'm learning to live one day at a time.

    As to attacking others for their opinions, that is totally uncalled for. I don't agree with everyone on this board, but I keep my comments to myself.