Fibro is NOT a disease

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

  1. happycfs

    happycfs Member

    The definition of the word "Disease": (Dis-ease)

    a disorder of structure or function in a human, animal, or plant, esp. one thatproduces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury: bacterial meningitis is a rare disease| a possible cause of heart disease.
    • a particular quality, habit, or disposition regarded as adversely affecting aperson or group of people: departmental administration has often led to the dread disease of departmentalitis.ORIGIN Middle English (in the sense ‘lack of ease; inconvenience’): fromOld French desaise ‘lack of ease,’ from des- (expressing reversal) + aise‘ease.’

    ~~~To me, without a moment of question or hesitation, I live with the severe diseases of Fibromyalgia. It has taken my life away from me in so many aspects. I still work very hard to be positive and look on the brighter side of the clouds, but living like this, for decades now, the majority of my life, I very confidently say that I have a major disease.
    Just a side-note; the World Health Organization, Whittemore Peterson Institute, Stanford Medical,, Dr Teitelbaum and many many many others classify CFS/ME (chronic fatigue syndrome) and Fibromyalgia as serious neuro-immune diseases....Call it whatever you want. I am sticking to what I know in my body to be a very real and debilitating disease. No question. No hesitation. This, that has robbed me of my dreams, my family, friends, and so much more, is a ...disease.
    TigerLilea likes this.
  2. IanH

    IanH Active Member

    The point about saying that FM "is not a disease" is just to say that the diagnosis is insufficient and that there lies a disease beneath the concept of FM . Since there appear to be many correlates of FM it is highly likely that there are clear underlying pathologies and that a diagnosis of FM is missing those diseases. In our clinic all 7 people with a diagnosis of FM (not with ME) have spinal stenosis which we took the time and expense to discover. Hence in these cases FM ie widespread pain is a consequence of the stenosis which we think, when combined with genetic predisposition causes the FM. In all likelihood this combination of gene+spinal compression acts to cause several disturbances in the neuro-immune interface in turn also affecting vascular function.

    No one is trying to dismiss the severe symptoms one experiences for many many years.
  3. IanH

    IanH Active Member

    Your signature says:
    CFS/ME, FM, OA, High BP
    Hypothyroidism, Diabetes 2

    Surely that should be a corroboration of what I am saying.
  4. jaminhealth

    jaminhealth Well-Known Member

    I've worked on "fixing" so much in my body since the 1999 emotional trauma that pushed me into the fight/flight/fright mess.....

    I function as best I can, thank goodness retired, and still work to keep going and manage.

    I deal with chronic pain and IF I took no otc pain meds, I'd be bedfast...

    But I won't call my issues a dis-ease.....why tell my brain this....

    We all have our opinions and I can say NOW after a messy hip replacement and almost 4 yrs of extra work to keep moving, I have a lot less of the fibro pain.....My issues MOSTLY are OA stiff body issues....Is OA a dis-ease, I just won't call myself dis-eased......jam
  5. gb66

    gb66 Active Member

    Ian, was just reading through these posts and noticed what you said about spinal stenosis. I was diagnosed with scoliosis and degenerative disc disease last month. Do you think this has a bearing on the FM situation. GB66
  6. IanH

    IanH Active Member

    gb66: It is my experience and observation that a large proportion of people with an FM diagnosis have some spinal degeneration. The problem is that it is hard to say whether the spinal degeneration is causing the FM - I doubt it. Most spinal degeneration is a combination of factors; injury (such as car accident), postural o.o.s. or a genetic malformation such as chiari malformation. For many people such "injury" is minor and causes little or no problem but if a person develops an immune system dysfunction such as ME or MS or Lupus then the spinal injury becomes deterioration and is progressive.

    Whether FM causes spinal deterioration is equally hard to work out but my experience says it worsens an already present pathology, which is what you would expect of an immune system dysfunction involving low grade inflammatory response such as upregulation of NFKb and consequent pro-inflammatory cytokines.
  7. gb66

    gb66 Active Member

    Ian, I've had the CFS/FM diagnosis for over 30 years and have had back pain for as long as I can remember. In 1998 I was told I had some stenosis at the base of the spine.

    Then, last month, I had x-rays and was told about the deg. disc disease and scoliosis. The scoliosis degree is 12%. I know that's supposed to be rather low.

    I guess these conditions can co-exist in a lot of patients. GB66
  8. jaminhealth

    jaminhealth Well-Known Member

    GB, I've had a first oneset of arthritis at 18 and got thru my life, with a lot of work but it wasn't until hip replacement at 72 did my body go into the spinal stenosis issue. There was a lot of time during the first couple yrs after replacement I could barely sit on my tailbone, I still use a donut pillow here at the computer....

    But, with the spinal stenosis EXERCISES I do daily even before I get out of bed, my spine has improved a bit that I can NOW sit fairly comfortable....for months I would carry this G.D. donut everywhere I I don't take it out of the house.... One major exercise is bring knees into chest and holding, repeating etc....this opens up the spine. jam
  9. Mikie

    Mikie Moderator

    Sooooo many people with various conditions have FMS symptoms as well. I've known people with RA, CFIDS/ME, Lupus, Lyme and MS who have also been told they meet the criteria for a diagnosis of FMS. I think quibbling about whether FMS is a "disease" is not very helpful except for those new to it who don't realize that we know so little about these conditions. There are criteria for making a diagnosis of FMS, including the tender points, which helps docs to provide treatments. I never call any of my conditions, diseases. I call them, conditions. I realize that there is currently no scientific basis for labeling what I have a disease or diseases. It doesn't mean I haven't suffered and it doesn't mean my symptoms haven't been severe at times. I was once bedridden most of the time and on morphine for pain.

    When people first get sick, they want to find a tidy diagnosis so they know how to treat and what to expect. Well, as all y'all know, treating what ails us is more often an exercise in trial and error. Also, unless extensive testing has been done, misdiagnosis is rampant. Many of the tests are not reliable.

    Are we sick? Oh yeah, we are !!! We may be sicker than so many with diagnoses of serious diseases. Just because I don't make claim to a "disease" doesn't make it less so. A rose by any other name...

    Love, Mikie