Fibro is NOT a disease

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

  1. TigerLilea

    TigerLilea Member

    People do not visit CFS/FM forums to be told that they don't have an illness or a disease. We can go to our doctors or talk to family members for that kind of nonsense. If it were as simple as mind over matter I would have been cured years ago. My sister-in-law would not have spent most of July in the hospital because her FM pain was so bad that she couldn't cope with it any more.

    ProHealth are trying to attract more visitors to this site. If I were new here, and read that I didn't have a disease, and that it is mind over matter, I'd leave and look for another board/forum.

    [This Message was Edited on 10/22/2012]
  2. sunflowergirl

    sunflowergirl Active Member

    I was set straight about this "disease" issue years ago. It is classified as a syndrome, so technically Jam is saying it's NOT a disease. Until lab tests are created to give a positive "a ha" it will NOT be a disease. It seems to have become a "trash heap" where doctors label it FM for everything they can't give an answer to.

    Since a doctor can't experience the pain, fatigue, and suffering we go thru they can only guess at what's wrong. Last year I was in TERRIBLE pain, I seriously wanted to check out of life! I was sent to a specialist/rheumatologist who taught at a local university. When I went to this specialist I was amazed at his assembly line in the waiting room and exam rooms. There were at least l5 of us ladies waiting to be seen, all with FM. His exam was quickly done on me after I had been seen first by his treage nurse. He declared I had severe FM, prescribed warm water therapy and said I HAD to go on Lyrica.....no discussion. I went 3 weeks later on a follow up....highly annoyed at the treatment I got, went off the lyrica because it didn't work for me.

    Since then I had MRI done and discovered severe Cervical degenerative damage along with scoliosis. I've had to read up on this on my own since the doctors I've seen have fluffed it off as part of "old age". Nonsense! I've also realized that this severe pain is different from the bad pain I feel with FM. And yes, I can have both types of pain at the same time. Talk about living in hell. When the pain starts to abate, then the bad fatigue hits me. Stress from anything brings on muscle tension which then brings on FM. I'm learned to read the signs of my body and trying to relax the muscles.

    And if I were a rheumatologist, I would order an MRI on my patient after they kept telling me of severe pain. BUT......insurance companies seem to rule what the doctors do. Thankfully I still have a PPO and good coverage. MRIs are extremely expensive, so it's easier/cheaper to tell a patient they have FM and give them a pain pill, pat them on the head, and tell them to go learn to live with it. [This Message was Edited on 10/22/2012]
  3. jaminhealth

    jaminhealth Well-Known Member

    or do the supplements I do daily and some for many years. Grape Seed Ex 17 yrs, I was on this supp 4 yrs before the FM hit my body....

    MSM powder, higher doses daily for over 3 yrs, this reduces pain...I've talked about this a lot here...a lot are deficient in sulphur... Magnesium too, huge deficiency....Vit D huge deficienty....the list goes on and on.

    TL, has your sil done either of these? Does she take a thyroid support? I'm more than convinced on this one, again that normal mantra, I was there for 10 yrs...

    I don't know what she's done for her issues and I'm sorry she's been in such a bad way...

    I don't like where I am now, but I've accepted it, can always be worse and it can be.


    OK, here's one I've never googled: Grapeseed Extract and Pain Lots of sites come up...even the Univ of Maryland Medical. I've taken it so long, mostly for immune system and hopefully keeping cancer out of my body.
    [This Message was Edited on 10/22/2012]
  4. IanH

    IanH Active Member

    Goldberg has described this "symptom".
    http://www.neuroimmunedr.com/index.html

    I also came across it in dealing with people on AESSRA which is a group dealing with MCS and allergy. Some people had the bi-lateral bright red half circles on each side of the throat. Some others had a more diffuse version of it. I suspect it occurs in people with an immune disorder and are also prone to throat inflammation. It is clearly an inflammation but not of the usual type in infection.

    Other than that maybe some from the support groups can make a comment.
  5. IanH

    IanH Active Member

    Both my wife and I have been diagnosed ME/CFS (as best it can be diagnosed). I also have fibromyalgia (diagnosed several times by different Rheumatologists) In the beginning my FM was very severe. I could not walk without falling. Pain was tested in 14 tenderpoints. I had tremor, cramps that were unbearable. I could no longer use a computer, I could not sit up in bed, I could not sit on the toilet, I could not drive a car. I collapsed several times. I never got more than 3 hours sleep. I had to give up my work completely. I now have only pain in my wrists and find it difficult to play piano/guitar but I can type well on the computer again. I can garden, I work with my wife in her studio but I could never go back to my original job.

    I have had various tests:
    Brain scan, showed minor white matter shrinkage, no other abnormalities
    Cervical spine scan: showed stenosis of C3,C4C5 mostly on the left side
    Thoracic spine scan: compression of T3-T4
    Lumbar spine scan: stenosis and disk inflammation on L5 causing conduction problems down both legs (sciatic) but mostly on right. Explains some of the pain on top of the feet.

    Now, each of those scans I paid for. The Rheumatologists said there would be nothing to see and they would not authorize scans. THEY WERE WRONG.

    I later saw a neurologist and neuro-surgeon who both agreed I had ME. They focused on symptoms other than the pain, such as diarrhea, fatigue, post-exertional malaise, and loss of fingerprints.

    My wife was tested for MS, Myasthenia Gravis, and Parkinson's Disease.
    The neurologists were unsure but diagnosed ME/CFS.
    Her symptoms were : tremor, anorexia, sore throat, swollen
    lymph nodes, ataxia, double vision, extreme fatigue, and some wide-spread aching.
    We paid for a brain scan: white matter lesions suggestive of early MS, gray matter shrinkage excessive for her age and some cerebellar scaring.
    She does not have MS to this day. However these signs on her scans do partly explain the ataxia. She is very affected by chemical exposure, such as perfume, pesticides, paints and petrochemicals and some household detergents and antibacterial agents.

    So here we have two people with ME/CFS and very very different symptoms. The symptoms partly relate to physiology but only on detailed investigation.

    I have talked with many other cases like ours where the detailed work has been done and every time the symptom variation is related to individual physiology. This is why the illness (ME) is idiopathic. BUT the fundamental cause of the problems is the immune dysfunction and mitochondrial insufficiency. When you get mitochondrial dysfunction caused by immune disturbance anything can happen but the symptoms show up in areas of "idiopathic" weaknesses or pathologies. The specialist will find them IF THEY LOOK - but that costs money.

    My final point. I believe that the term Fibromyalgia is useful because it describes the widespread pain that happens in many illnesses but particularly for some people with ME who have pain generating physiology and genes. 48% of people diagnosed ME also fully meet the criteria for FM. Another 40% have inexplicable pain but doesn't meet the criteria for FM. Well do they not have FM? This is nonesense!
    The issue of whether FM is a disease must take into account the inability of the tender point criterion to stand up. It doesn't. And when researchers start to point out that FM is different from ME just look at the examples I gave above. ME causes such differences.[This Message was Edited on 10/22/2012]
    jo' likes this.
  6. Saoirse3

    Saoirse3 Member

    This year marks 20 years of FMS. I have had doctors who believed in it and doctors who told me I was nuts. I've been to every kind of doctor ending in "ologist", in 4 states. I've read until I thought my eyes were going to fall out. I've taken the "newest and greatest" from the pharmaceutical companies and enough supplements to fill every grain silo in Kansas. I've been on diets, eaten stuff I hated because it was "good" for me, exercised, and swam the equivalent of Alaska to Hawaii. I've hung upside down and given enough blood to host a Hollywood vampire festival. And this is what I know.

    I hurt. And the pain is real. I don't really care if I have an illness, a disease or enough dysfunctions to keep the Mayo Clinic busy for decades. I want a cure, relief and a resolution as fast as everyone else with this DD! I can look at my own blood tests and know what is going on because I have taken the time to research them and understand the results and I keep up with research. But the bottom line is, I CANNOT cure myself. I have to be content with what is there and, like everyone else, WAIT. Wait for a cure, wait for a breakthrough, wait until "THEY" find "SOMETHING" they can all agree upon. Some days I cry because it hurts so much. Some days I would like to slug my doctor and say "When I do THIS, do you feel PAIN?" And some days, I just have to suck it up and go on, because I have no choice. Some days I feel pretty good, too! Why? I have no idea. But until I or they find answers, this is MY reality.

    Soft hugs,
    Stacey
    jo' likes this.
  7. keke466

    keke466 New Member

    I've had FM for 14 yrs now and it's only gotton worse. Now I've got all this other crap to go with it. I don't care what it's called. All I know is I'm sick and in a hell of alot of pain. I finally had to stop working afterworking for 38yrs. I'm applying for SSD now and have noone to depend on. I don't know what's going to happen. It irritates me to no end to hear someone say it doesn't exist. Until you've been thru what we go thru,shutup. This is what I want to say to people. I'mm 55yrs old and my life as I knew it,is over. It's depressing and cause so many more illnesses we have to deal with.
  8. Mikie

    Mikie Moderator

    When we don't know what causes something and we don't even know what that something is, we have names we call these conditions. A rose by any other name...

    We all have similarities and individual symptoms and experiences. We need to support one another and not let our discussions turn into fighting.

    Many of y'all know I came here bedridden most of the time and on morphine for pain. It was our kind and generous members who shared their own experiences and treatments with me. I studied those treatments and tried the ones which made sense for me. It took a long time, but I gradually improved. I owe it all to this website.

    Most of what my docs and I did was empirical because my HMO would likely not have paid for expensive tests. If the potential risks were small and the potential benefits great, we did it. And, many of these things worked well enough to get me out of bed and off the morphine. After that, it was a matter of trying other things and continuing to improve. This has been a very long road to recovery. I'm not 100 percent recovered but I'm a LOT better than 12 yrs. ago.

    I've been diagnosed with CFIDS/ME and FMS but these labels mean less to me than treatments which have helped me. The labels can be useful in describing my conditions to my docs, both those who are not familiar with them and those who are not. I've been lucky with my docs. They understand that we know so little but, at this time, the name of the game at patient/doc level is healing as much as is possible with what we know. The researchers have the burden of finding the cause(es) and cure(s).

    Love, Mikie
    jo' likes this.
  9. rosemarie

    rosemarie Member

    I can't say which fibro fits into. All I know is that fibro is real, it cause's me alot of pain and fatique. Muscle pian , nerve pain, all over pain, I live with this daily. No one has told me I have a disease or a syndrome, I just have some thing that is affecting my central nervous system.I have tested postive for all 18 tender points, what does this mean?

    I see a rehumitloigist who's biggest worry is how soon I can have my knee's replaced. Since that is not going to happen due to lack of money I wish he would drop it. Having end stage oesteo-arthritis is not the cause of all my muscle pain nerve pain bone pain and genreal over all feeling of totoal exhustion, fatique, pain both muscle and bone, nerves and all other pain that comes with fibro , MPS, and the rest of the chornic pain problems I have to live with?
    I also have MPs so what is it? a syndrome , diease or just constant pain, between teh fibro and the MPS , lack of sleep, bones that ache so badly that they feel as if they will break from the severe pain that lives inside my body.

    Do I have a disease or syndrome? I have fibormyaligia , MPS, ddd, spinal stenosis, buging disc's, end - stage sesteo-arthrits in both knee's , I have arthritis in my left wrist due to my shattering it and having to have a titiaum plate put inside to hold my bones together.
    I can truthfully say that my body is not functioning correctly and I Live in pain every day all day.

    Do Iwish I had some one to tell me that what I have is a disease or a syndrome of the CNS? Yes I would like it. What I Know now is that I am disabled due to not only my knee's that need replaceing but to the the disabeing pain that is all over inside my body,
    IF I were to belive my girls there is nothing really wrong with me and it is all in my head. And I am addicted to pain meds.

    Which I am not for if I were how then am I able to reduce the amount of pain meds I take? I have done this of my own free will, going from taking 500 mgs of MScontin and taking over a 100 mgs of MSIR, to what I am taking now. 60 mgs of MScontin, 4 mgs of hydromophone, .

    I have tried so many different meds, I have tried supplemetments but some are costly and I have a limitied amount of money I can spend on supplemets as they are not convered by insurance. I have chemical senstiveities and a sensitivity to my soundings, loud noise's cause me intense pain, as to bright lights, screaming kids babies, sounds from lights, the darn neon lights that are on head lights cause me to hurt so badly that I can't think straight.

    Not every one responds to either treatment plan be it pain meds or supplements, we each react differetnly to our situtaions and to how much pain we live with. We each make the choice to take supplements or pain meds and how much of each we take. My rehumy does not believe in supplents as to him they are not proven to help and some could cause more problems than he feels they would help. Me I know that no two of us have the same symptoms, or the same reactions to what we choose to take to ease our pain, be it pain meds or supplements. I do appericate all the acceptance and help I get from each of you here on this site. I know that there is an answer some where it just has not been found as of yet neither has a treatment plan that will help each of us all the time.

    Yes I am disabled due to pain more than any thing. Pain and fatique are the things that are the cause of my symptomtions.
    NO doctor has ever told me that fibromyaligia is a disease or syndrome. Does it matter? I have some thing that is causing me so much pain and I am doing all I can to live with it and accept that no one really knows what the heck is going on inside of my body.

    Yes I would love to have a digonisis that says I have a disease so that people would stop teling me it is all in my head. There is little that can be done for a syndrome such as fibro if that is what it really is.

    But this disucissoin about disease or syndrome does not make my pain any less real and it does not make it any easier less easier to live my life .
    I do have questoins about what is ssuptance P, how is it tested for? and if there is a test for it is it going to cost me alot of money? IF I learn that my levels of this suptance P are high how is this going to change my treatment plan?
    Thanks for reading my thoughts about this subject.
    Gentle hugs for all here .
    Rosemarie[This Message was Edited on 10/23/2012]
  10. jaminhealth

    jaminhealth Well-Known Member

    I just google the above and read a good explanation of the Thalamus and Pain.

    I'm getting acupuncture treatments now and my rheumy puts needles in my right ear and top of head and she says this addresses the thalamus and pain....I'm due tomorrow for my 9th treatment, will be happy to get it.

    I Know when I went thru the FM trauma in July 1999 I was pushed into the fight/flight/fright condition and this is all from the hypothalamus....

    No matter what everyone thinks, I truly believe so much of the body systems need to be addressed to help get out of the chronic pain condition. There is not one cure, there are many systems that need to be addressed....
  11. IanH

    IanH Active Member

    about these little discussions is that no one is saying the cause of the illness(es) is psychological or warped illness beliefs.
  12. lvjesus

    lvjesus Member

    Exactly what I was thinking, Mikie! :)

    No matter WHAT you call it, it is a pain in the butt! (and the legs and the arms and the back and the...)
  13. jaminhealth

    jaminhealth Well-Known Member

    about these little discussions is that no one is saying the cause of the illness(es) is psychological or warped illness beliefs. ------

    For me when I was let go from a job I was going to retire from at age 61, the emotional trauma of fear put me into this FM syndrome.....FEAR that froze my body, what will I do to get thru the rest of my life.....the financial stress.....this departure came without notice, sudden release....granted my lady boss was not a favorite of mine, that is mildly put, and granted I sued on age discrimination and won a "small" settlement, better than nothing, but I got the FM stuff. Suit was thru EEO people...

    Prior to this lifechanging encounter, there was no FIBRO.....



    So as I see it for me, it was a physchological emotion that put me in physical pain...then also for me, the surgery trauma has made things worse...

    so complicated, and everyone's path to this FM must be unique....
    [This Message was Edited on 10/24/2012]
  14. sunflowergirl

    sunflowergirl Active Member

    I've had 3 Csections and one operation for ovarian cyst. 2 auto accidents but for me the thing that brought it on was a badly dislocated jaw due to a dental trainee glueing my mouth shut. After 30 min of me sitting there the dentist discovered this and had to pry my mouth open. I felt a pop, but not until 2 months later did I start excruciating pain in my head, jaw, teeth.....I lived with this and ibuprofen for 6 months. After that the fatigue hit me for a couple of years...then came pain everywhere. Took me at least 4 years to finally find this board and read what I had. No help from any doctor.

    When I get stressed over something, my muscles tighten. It's really hard to relax them, so I guess it's psychologically related. There's that old mind/body connection. We become what we think.
  15. Mikie

    Mikie Moderator

    Anecdotal experiences of our members leaves me to believe that any number of things can bring on one, or more, of these conditions. My CFIDS/ME was triggered full blown by a mycoplasma infection; my FMS was triggered by an auto accident ten years later. Still, I can look back into childhood and see omens of things to come. It could have been anything which triggered my illnesses. I managed to come back from some assualts on my system but, eventually, I was taken down.

    Some had their conditions triggered by emotional stress and some by physical stress/trauma. Some seem to have had their illnesses triggered by exposure to toxins. Some, like me, struggled with infections which went chronic and stealth.

    The old saying, "All Roads Lead To Rome," seem appropriate somehow. So many paths lead to our illnesses. Even our illnesses are different from one person to another. There is nothing that we can say which applies to everyone. Each of us is different and each of us reacts differently to the various treatments. I do believe in the "Subset Theory" and I also believe we have a genetic predisposition toward these illnesses. These are only MHO's based on twelve years here reading about our members' experiences and reading what the experts are saying.

    Until we have some answers, I believe we should never ever give up. We should try different things; some will work and some will not. I think we need help with the grieving process so we don't get stuck in denial or anger and can get to acceptance. Acceptance doesn't mean giving up or giving in. It means we don't waste time and energy on denial nor anger and use our precious energy trying to find things to help us heal. If what we first try doesn't work, we shouldn't give up or swear off trying anything again. You never know what might work. I know that these illnesses can cause financial strain and it might not be possible to try everything but there is usually something which will work without breaking the bank.

    Finally, I don't think we should let the ignorance of much of the medical community dictate our healing. There are good docs out there. My first doc knew nothing about these illnesses but he was willing to learn if I would do the footwork researching. He was very helpul until I found a specialist. If our docs cause us stress, we are better off without them. Same with family members who are toxic to us. If we tell them we are sick and need their understanding and help, they should do everything within their power to help us. If they are so dysfunctional that they cannot, we need to distance ourselves. I call these boards our "Online Family." We need to love and support one another. It is one of the highest callings and an opportunity to do what we are here to do--give to others in order to grow ourselves in spirit.

    Love, Mikie
  16. IanH

    IanH Active Member

    What you are describing is a common cause of depression.
    Of course you also say you do not have an disease and I suppose this is a healthy tactic for you. Labeling your widespread pain "FM" is justified too in my books because FM is just a description of symptoms.
    [This Message was Edited on 10/26/2012]
  17. IanH

    IanH Active Member

    This is one of many cytokines called neurokinins because they are in the nerves, spinal chord and brain. They are neurokinin-1 or substance P is a pro-inflammatory cytokine increasing inflammation in the nervous system. Everyone with FM and most with ME (if not all) have raised levels of substance-P.
    Not worth testing for because it will make no difference to treatment. There is some evidence that its levels are related to the depletion of glutathione.
  18. jaminhealth

    jaminhealth Well-Known Member

    work to reduce the "nerve body pain"? I've never taken the Glutathione....read the below:

    If one wants to rebuild your health, this is one of the most essential of the supplements. It, actually, rebuilds the entire body from the inside out.

    The FM I deal with is mixed with a lot of OA pain too, some days I don't know which is worse....getting older, it's gotten worse, and more so since hip surgery trauma....

    Perhaps it's time to start with Glutathione...there is a lot of info out there on this amino acid.

    I just read ProHealth's customer reviews on Glutathione, impressive...[This Message was Edited on 10/28/2012]
  19. sunflowergirl

    sunflowergirl Active Member

    here's some easy to understand info on it. I'm going to start seriously looking into this

    http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
  20. jaminhealth

    jaminhealth Well-Known Member

    a blanket statement about amino acids is, they are our body's building blocks...

    Mostly best taken on empty stomach....