A MUST READ -- Recent Fibromyalgia Findings!!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by JLH, Mar 8, 2006.

  1. JLH

    JLH New Member

    Recent Fibromyalgia Findings


    Source: The Science & Research of CFS, The CFIDS Chronicle Special Issue, 2005-2006.

    Just released, this issue is generating huge buzz in the FMS/CFS community. Copies are available through the CFIDS Association’s website at www.cfids.org for $12 each. Visit http://www.cfids.org/special/default.asp to browse a complete listing of articles, including links to several online samples. Source: Special Issue: The Science & Research of CFS, The CFIDS Chronicle, 2005-2006 Issue. A publication of the CFIDS Association of America.

    Although there are some immunological aberrations in FM, including a decreased number of natural killer cells, most researchers now believe that the illness IS NOT AN IMMUNE SYSTEM DISORDER. “Essentially, there is nothing specifically immunological in fibromyalgia – and if there is, whatever little there is, I think it is secondary to the central nervous system problem that fibromyalgia patients have,” says Dr. Muhammad Yunas. “IT’S A CHRONIC NEUROLOGIC DISEASE.”

    Numerous research studies have found biologic abnormalities in FM patients, and it’s increasingly uncommon to hear physicians suggest the illness is all in your head. “There was a time when we thought fibromyalgia was psychosomatic. WE NOW UNDERSTAND THE PAIN IN FIBROMYALGIA IS CAUSED BY AN ABNORMALITY IN THE CENTRAL NERVOUS SYSTEM in which pain sensations are amplified,” explains Dr. Robert Bennett, an FM expert at Oregon Health Sciences University.

    This “central sensitization theory” is described in detail in the August 2005 issue of the Journal of Rheumatology. Basically, THE THEORY IS that fibromyalgia results from miscommunication among nerve impulses in the central nervous system – the brain and spinal cord – causing FM patients to feel intense pain when they should only feel mild discomfort or fatigue.

    Recent investigations found multiple triggers for this amped-up response to pain. For instance, FM patients have three to four times higher levels than normal of substance P, a central nervous system neurotransmitter involved in pain processing. Researchers also found lower levels of substances that diminish pain sensation, such as serotonin, norepinephrine and dopamine.

    Dr. Daniel Clauw, the director of the Center for the Advancement of Clinical Research at the University of Michigan, says, “The pain of fibromyalgia is not occurring because of some injury or inflammation of the muscles or joints. There is something wrong with the way the central nervous system is processing pain from the peripheral tissues. It’s overamplifying the pain.”

    Pharmaceutical companies are now interested in developing drug treatments base on the new research.

  2. 69mach1

    69mach1 New Member

    i am not a medical doctor but i sure as heck know what i feel like...i pray they get a cure for this...maybe they can get a definitive answer and relieve us all of this problem....

    this why i probably feeel so amped up at times taking meds or they don't work...i tried to explain this to a friend last week because i felt she was comparing me to her sister who had neck problems from being a cop in an auot accident w/twins....

    it hurt my feelings in a way...there was more said...and she did respond back that she was not comparing me to her....i told her ye her husband is dead now, but caren has family to help her out...she has an older daughter who is 17 years old that can help her do things...plus she has parents and three sisters and a brother who all live in the area...i have no family and a 16 year old so when something needs done i have to do...

    i'm sorry i am getting a carried away here...

    praying they have a cure soon...

  3. pamsue

    pamsue New Member

    I think this explains alot of things that are wrong with me and I have also always thought it was something in the central nervous system

    I am so glad you posted this. I have something else that is of the sympathetic nervous system it is called Chronic Regional Pain Syndrome also know as RSD Reflex sympathetic Dystrophy. Either way it has to do with the nervous system.

    It must be a tough thing to figure out the nervous system. Doctors sure do not want to deal with it from my experience and I am sitting here now with a swollen foot that turns red and purple and I can not even put a slip on shoe any more and they still think it is all in my head.

    What are you going to do? I am very glad you posted this, hopefully this will help give answers to all Chronic Pain diseases.

  4. Steviegal

    Steviegal Member

    I'll jump on the band wagon with y'all! When I first got 'sick' 3 years ago I was compiling all kinds of folders on Dysautonomia, Central Nervous System dysfunction, Fibromyalgia, CFS, Hormonal Imbances and on and on. Everything I was experiencing (then at age 48).Then I saw an article link on Dominie Bushs'website written by Dr. M. Martinez-Lavin detailing his research on Fibromyalgia and heart rate/rhythms. It made me tear up thinking, "Why the heck do most doctors think patients like us are nuts. Finally! A doctor on the right track!" I see now there are many articles written or co-written by this forward thinking researcher. His suppposition that Fibromyalgia and Reflex Sympathetic Dystrophy are CNS problems and are linked is "right on"!
  5. NyroFan

    NyroFan New Member

    I had a test done and it determined I was having seizures in my sleep. I was sent to a nuerologist by my rheumy and he confirmed it. I take Klonopin during the night for it.
    Whether it is all a neuro disease, I believe the jury may still be out on that. I read many respected journals from other countries and FM/CFS is quite controversial as you know. Thanks for the post! Good info.
  6. Slangx

    Slangx New Member


    I'm curious about the seizures during sleep.

    Did you ever have any sort of idea that something was going on while you were asleep? I mean, did you wake frequently (or suddenly), have weird dreams, wake in the morning still exhausted, twitch, feel pain, or anything at all to clue you in that "something" was happening?

    I am wondering what the deal is with my sleep. I fall asleep just fine, no problem. And usually stay asleep just fine, no problem.

    The problem is, I am EXHAUSTED when I wake up, like I've spent all night running a marathon. Or, really, it's more like I just simply haven't slept in 3 days. (meaning, my body isn't tired per se, like with physical activity, it's my mind that's wiped out).

    And I was on Klonapin for awhile, to try and...how to explain this...I guess "break through" the shallow level of sleep my dr. thought I was getting stuck in, so I could get the deep, restorative sleep.

    I have vivid, intense dreams, too. They drive me nuts!! It's like the dreams are so real, they actually wear me out.

    I'm not trying to put words in your mouth, or have you agree with me -- I just wonder if you personally had any symptoms of having seizures during sleep.

  7. damz68

    damz68 New Member

    Agree with u 100%. BUT, it could all be related to pain. Pain or nerve pain causes burning, flushing and buzzing. Pain causes the body to not sleep right. If you cant sleep right, well that causes a host of problems, especially fog.

    So maybe all that we feel is directly related to the pain.
  8. redtex

    redtex New Member

    since fm manifests itself in the soft tissues they get"stuck" treating it even though it is a neurological disorder. neuros don't want to mess with us either. we are really misunderstood by everyone.
  9. damz68

    damz68 New Member

    I saw a neuroligist, what a joke. He spent time checking my strenght and reflexes. The last thing he checked was the bottom of my foot. He lightly ran a pointer under my foot and I about kicked him in the face. I was like, I guess my reflexes are good and he could not stop scratching his head.

    He told me, too much of a reflex can be bad. I guess he felt I was alright because he never sent me for any other test.[This Message was Edited on 03/08/2006]
  10. Fudge43

    Fudge43 New Member

    I find the article interesting and believable .. but ... what happens to us when we have a thyroid condition such as I do with Hashimoto's Thyroid ? .. this is an auto-immune disorder as I understand it .. so I get a double whammy then ? .. and on top of that MVP with all of it's wonderful options ..
    As far as I know .. there is not one fibromyalgia patient that only has fibromyalgia ... what is the cause for all the tag along conditions, is what I would like to know ! and is there any hope to fix us ?
    Fudge : )
  11. NyroFan

    NyroFan New Member

    In answer to your question, I used to have a hard time falling asleep because just as soon as I was about to drift off I would twitch. It would keep me awake. I got hooked up for a night study and they found this was going on all night. Ergo, the Klonopin. Do you have a neurologist.
    If this disease has neurological implications, why not check it out. Just a suggestion. Feel well.
  12. pamsue

    pamsue New Member

    ellispad, I have something to add. Your profile says you are around the same age that I am . It also says that you had your children before you had the FM diaganosis.

    I think what they are saying is when you have the FM you are in considerably more pain then you should be, not before you got it. I had a high pain tolerance too at a younger age, I did not start my FM until well after having kids. My FM started about 1 year after my cervical surgery , the only problem is no one knew what was going on with me until about 3 yrs later when I was finally diagnosed.

    I only added that because it sounds like , from what you said that you had a high pain tolerance before the FM. If you have FM now you must have a lot of unexplained pain. Or am I wrong, sorry I don't know how to get my point across on here. I happen to agree with the article only because it seems logical to other things that happened to me, but who knows it won't be the first time I have been told I am crazy or that I am crazy to think it may be neurological

    Thanks for listening, sorry to blab

  13. Defibro

    Defibro New Member

    Neurologist should do the research, the symptoms indicates to go to a Rheumy (chronic pain), but the real cause is the transmission between receptors and Hypothalmus (I think), because the CNS is distorting teh messages going in between.

    My DH tells me that it is like your transmission lines are non-linear (have a kink in them), or they have the wrong impedance, or termination, between transmitters and receivers.

    He is just doing an analogus comparison between TV/Internet transmission cables and your TV reception. If the cable has the wrong impedance or is non linear (due to a break down in the insulation), you will have a distorted picture, or noise.

    Since we have amplified pains (distorted), he believes, that it is our CNS that is not functioning correctly or not working optimally. How to fix that chemically is the $64K question.
    And may the connective tissues are the sheathing around teh nervous system... (getting way too far now, I told him)

    Just my DH 2 cents..
  14. spring02

    spring02 New Member

    I don't have the tender points, which apparently is one of the diagnostic tools used to identify FM. However, I do have many similar symptoms, including a hypersensitive nervous system and reflexes. The sole of my left foot is always sore and sensitive and I have difficulty walking and sometimes my speech is affected. After three MRI's, 2 EMG's and an EEG, all they can tell me is they know what I DON"T HAVE. I guess that is good in one way, but if I had a diagnosis, then I may receive some treatment. Even if it turns out to be MS, which does run in cousins of my mother's side, then at least I would have a label to call it and may receive treatment to help stop the progression.

    I think the most depressing part of any patient suffering from unexplained constant pain and other neurological symptoms, is that people tend to think "it's all in their head." Yet the constant pain and other symptoms are very debilitating. At least I can thank God for 55 good years, before my quality of life changed drastically. Prayers and best wishes to all those suffering and looking for answers.
    God Bless,
    The Canuck
  15. davebhoy

    davebhoy New Member

    whenever there is a new theory for fm or cfs why is the immkediate response to it always that drug companies are looking at cures? we know they will just look at wehat they already have on the shelves and try to fit the new thoery to that drug.

    i the u.s. it always seems to be about drugs. maybe we shoudl try to look at other ways of solving these problems without these leeches making cash out of us.

    they arent interested in curing us only making a dollar, they wont cure us, i think deep down we all know that.
  16. lease79

    lease79 New Member


    I truly believe that this is true ;)

  17. pamsue

    pamsue New Member

    thanks elliespad for clearing that up for me, I am glad you did not take offense to what I wrote, I usually try to stay away from this stuff, but like you said I am trying to learn and I can see we all are

    I guess that is why the doctors are having such a hard time with it if we can not all agree on where the main problem is it is no doubt the doctors can't either.

    I just hope one day soon we will get news we can all be helped by , wouldn't that be nice.

    by the way I live in the Buffalo area. Our daughter goes to school in Albany though.

  18. hope2001

    hope2001 New Member

    I have posted lots of old messages about this exact topic..I am glad to see people are looking into the issue.

    My sons have them...tends to be hereditary...I kept having night episodes where I would wake up terrified and/or dizzy and go for help then "pass out"
    I have hurt myself many times going down..
    during my most recent pregnancy in the last year and a half they did an MRI because they were thinking I was prob having nite seizurs, esp considering my sons.
    I have atrophy in R temporal lobe, prob from seizures (they leave scars and tend to repeat in same "gulley") and fluid in my brain where the tissue has receded.

    I am doing so much better now...gettting my thyroid treated w/out regard to lab results (but based on symptoms) also has helped. My kids have all tested low thyroid and my doc and their docs and our neurologists ALL SAY the THYROID is the most important thing to keep regulated to guard against seizures and is a big cause of seizure problems....
    I don't know where fibro starts or ends but my doc says that when you get one thing off kilter (so to speak) everything else follows...then you have a bunch of problems and have to start working through them one by one and over time you start getting better.
    and that is what seems to be happening with me...
    Good luck!!!
    [This Message was Edited on 03/08/2006]
  19. hope2001

    hope2001 New Member

    I agree with you on that...I have also had a bunch of kids and lots of things and docs have always told me that Ihave an unbelievable high pain threshold..
    so why would we be hypersensitive to SOME pain, but not other pains?
  20. ilovecats94

    ilovecats94 New Member

    Thanks for posting that article. I agree with it completely. This is why I find the Prozac and Xanax to help me so much.

    Now I'm dealing with GERD issues and the pain from that is the worst pain I have almost ever had when I am laying down. I guess I'll be up until 2 AM this morning. :( Onions and peppers are just two enemies of mine lately.

    You have put a lot of articles on the board lately and I wanted to thank you so much for that, Janet. I still have some I haven't had a chance to read yet.


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