Spontaneous remission

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Sep 15, 2008.

  1. Missizzy

    Missizzy New Member

    Good Morning All--Well, I'm still up and running. For those wondering what this is about, please see my post titled "Missizzy has an exciting update". I started doing some research this morning on spontaneous remissions and I found this very pertinent excerpt on the absolutely wonderful and informative hummingbirdsguidetome site:



    "Myalgic Encephalomyelitis has many different and unpredictable outcomes. The illness can generally be; progressive or degenerative, chronic (and relatively stable), or relapsing and remitting. In some cases M.E. may also be fatal. Unfortunately the myth that ‘everyone recovers eventually’ is just not true for M.E. patients, but many patients are lucky enough to experience some level of improvement over time, and so there is reason for hope. (Everyone will recover eventually from various post-viral fatigue syndromes, but M.E. is an entirely different and unrelated disease to PVF syndromes with different symptoms, onset, pathology and prognosis.)

    Full spontaneous recoveries, where the person is restored to normal functioning are thought to occur in up to 6% of patients (although experts warn that these are remissions rather than true recoveries and that relapse is unfortunately a future possibility for these patients). A significant number of patients will experience partial spontaneous remissions; where functioning improves markedly but there is still a mild to moderate level of disability present. (‘Spontaneous’ means that these improvements were natural, and not the result of treatment.) Around 25 - 30% or more of cases are progressive, degenerative or extremely severe. (The best way to look at this is that most cases are NOT progressive, degenerative or extremely severe…and even if you are severely affected, improvement IS possible for you in the future; particularly if you can strictly avoid overexertion. Dr Dowsett says that stabilization is possible at any stage of the disease so long as there is appropriate rest and treatment).

    For what it is worth, every single person I’ve spoken to about it, that has been lucky enough to have recovered 70% or more of their pre-illness function was diagnosed early, treated appropriately and able to rest adequately in the early stages of the illness. The most severely affected sufferers too are almost always those who were the most active (either through ignorance or by force) in the earliest stages of their illness, and thereafter (myself included). Avoiding overexertion is almost EVERYTHING when you are looking at getting your best possible prognosis with M.E. This can’t be stressed enough. The fact that we are limited in how active we can be with M.E., is a protective mechanism that stops us from causing further – and even more permanent and severe – bodily damage."


    I have been blessed by being able to listen to my body and rest for the last four years. I've never pushed myself (not sure how I could have) in the least. My theory is that my body must have been healing and learning to cope with its limitations when I experienced this sudden burst of adrenaline. These two factors worked together to return me to a high level of my original stamina.

    I'm very mindful of the fact that remissions are usually transitory. But I'll take what I can get. I guess my biggest question right now is what causes ME to have sudden onset and sudden remission? If it's not post-viral, if it's not Lyme--what is it? My symptoms have always been central nervous system based--balance, inner ear, sensory, post exertion fatigue, ataxia, tremor, speech miscues, etc. So, someone please tell me how one develops these symptoms in a matter of minutes and then wakes up four years later with them gone (even if only temporarily). I've been diagnosed alternately with MS and spinocerebellar ataxia. Those diseases don't have remissions as far as I know.

    So far, the only people who know what's going on here are you guys and my close family. I'm almost afraid to call my GP. As someone pointed out on my other post, I'll almost surely be met with skepticism. "We knew it all along--it was all in her head!" Duh. It most certainly was and probably still is.

    This has to be one of the most remarkable events of my life. I am clueless as to what brought it on and equally clueless as to how to assure that it continues.

  2. Rafiki

    Rafiki New Member


    It is what it is. Stay in the moment and who cares what anyone says.

    I had a fabulous 15 year 85% remission. I didn't have enough information about ME back then to question it ~ thank goodness!

    Enjoy now!

    Congratulations also on the new love in your life!

    Goodness, Missizzy, you do make a body feel good!

    Peace out,

  3. jmq

    jmq New Member

    Is all I can say.....who knows why or when....but thank you for posting this wonderful news. I have been following your posts and getting to know you from afar....and I am SOOOO thrilled for you. I will pray that this remission lasts and that it happens to others.

    I have FM and have not heard about anything similar...ME is different from FM? Oh well...I just live one second....not even hour...at a time.

    BIG HUGS...if I could I would be jumping up and down for you.


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