Discussion in 'Fibromyalgia Main Forum' started by charisma1973, Mar 18, 2003.

  1. charisma1973

    charisma1973 New Member

    I think I asked this in another thread, but can't remember and too tired to go read them all-go figure...LOL

    Anyways, we all keep talking about things getting worse-I know for me that the flare ups are more frequent and longer in duration. However when I was diagnosed the dr told me that it was a "syndrome", not a disease and that it did not get debilitating or progress with time....

    Any factual info that I can give him to prove otherwise?

  2. teawah

    teawah New Member

    Your doc obviously doesn't know a whole lot about FM. Unfortunately we are left to do the investigating for them and us as they would rather play golf. I started having symptoms at 4 and then in my teens I started getting worse and in my twenties I was BAD and now I can't work, have times that I can't think much less function. Ask your doc where he/she gets their info from.

    You can get all kinds of info from the web. Go to a search engine and type in fibromyalgia or whatever you want to know about. You will come up with all kinds of hits. You can print any of this info and show it to the doc. They don't want to see it most of the time. They don't want to think or admit that you have info they don't. They want you to crawl to them for the answers. For me, I have had to find my own way to deal. Life changes and eating changes and all kinds of natural supplements such as ZMA and calcium/magnesium.

    I hope you find your answer. ((((hugs))))
  3. Plantscaper

    Plantscaper New Member

  4. Frackie11382

    Frackie11382 New Member

    I personally feel that FMS is progressive because I have had it since I was four years old! I have had my symptoms wax and wane over the years, but over all I feel that I have gotten worse. I mean, I have dislocated my knee 2 summers in a row now and hyperextended the same knee several times. I also have developed carpal tunnel syndrome in my wrist. Thank God I have a wonderful doctor who works with me to find treatment options that work for me. The one fear I have is that somewhere along the lines I will get even worse and not be able to do anything at all. My immune system is shot and I even get fibroid tumors on my ovaries. There is no way this disease is not progressive, at least in some form. Take it from me, I'm 20, on 4 meds a day (plus pain killers and vitamins), and have even been put on Oxycontin for my pain at age 15. It's not fun, but you really need to find a doc that will listen to you and prescribe a treatment plan based on your symptoms.

    Friends in Fibro,

    Frackie11382 aka Tara
  5. Bambi

    Bambi New Member

    Some of the "best" (so called) websites are STILL saying that FM is
    NOT progressive. I write letters to ALL of them constantly telling them
    that they are WRONG and need to check
    with patients, support boards, chat rooms and doctors that really KNOW
    about FM. It is one of the biggest lies about our illness and one of the
    hardest to get rid of. I don't know one person who just woke up severely
    effected, everyone started out with
    various symptoms and "progressively"
    got more and worse with pain and every aspect of FM. Hugs, Bambi
  6. bejo

    bejo New Member

    I don't have any facts except my body.It feels like it is progressing right along. LOL I'm sure my fog has also gotten worse. LOL It would be nice if the medical world would ask people with FMS if it progresses instead of testing it in a mouse or however they come to these brilliant conclusions. LOLOL bejo
  7. Dara

    Dara New Member

    with time. When I first started having this dd I could still work and function on a daily basis. As the time passes it has gotten worse and what use to be flares are now constant.

  8. Mikie

    Mikie Moderator

    I believe there may be different reasons for our illnesses and, therefore, different prognoses. Some people get better, some stay the same, and some get worse.

    There are just too many factors involved for anyone to be able to say whether this is progressive. The closest I would come to trying to answer this is to say that I believe in some individuals it is progressive.

    Love, Mikie
  9. lin21

    lin21 New Member

    Now I know that mine started four years with leg pain so bad that I couldn't walk. It went on this long being mis-dianosed as torn cartilidge in my knee. I found myself where i am today after knee surgery, so I believe it must be progressive.

  10. bejo

    bejo New Member

  11. Solstice

    Solstice New Member

    I do remember reading that for some it can be progressive. Basically what Mikie is varies. But for me, yes it has been progressive. And it is frustrating, that in most of the info. it says it is not. But what do they know..........they don't even know what causes it, or how to treat it.
  12. Brighdi

    Brighdi New Member

    I just joined here tonite. I'll post this weekend.
    I definitely believe, at least in my case and now seeing what you all have posted, that this is progressive.

    I did find that Dr. Devyn Starlyn, on her site states that Myofascial Pain Syndrome has now been found to have proof of a change in the muscles so that it now has to be considered a disease rather than a disorder.

    It used to be the pain was worse than the fatigue. Then the muscle issues were battling for first place with the pain, now the fatigue, pain and muscle issues are all fighting for lead billing.

    I'm glad I found this site!
    Til tomorrow,