Progressive?? Your opinion??

Discussion in 'Fibromyalgia Main Forum' started by tamsyn, Jul 14, 2008.

  1. tamsyn

    tamsyn Member

    Hi! I'm wondering what people's opinion is on whether CFS/ME is progressive. I have read that it is not. I have also read acounts of people recovering. However, I have had it for at least eight to ten years. I have made major, major lifestyle changes,. I eat healthily, don't drink or smoke. I spend 12 hours/night in bed. I take meds. I take supplements. I meditate. I get massages. I have done so much mind-body work with journaling etc that I feel like a qualified therapist! I've eliminated just about every energetic and social thing from my life. I have a part-time job at home only. I've let my career go. I keep my expenses low. I keep stress very low. I have a supportive family. Yet...I still crash. I am not recovered. Which brings me back to the question -- do you all feel this illness is progressive, stays the same no matter what you do, or that you can actually recover??? All thoughts appreciated!
  2. smokiebones

    smokiebones New Member

    I feel that what we have is progressive or our bodies get immune to the things we do and the meds we take so it is a constant battle of trying to find the right 'soup'.

    I have noticed in the medical world they do not seem to go along with Webster definition of progressive. Progressive to them is a disease that is degenerative. That is why I feel they do not classify CFS/FM patients as progressive.

    Best wishes
  3. DeborahLynn

    DeborahLynn Member

    My ME/CFS and FMS have definitely gotten worse over the years. I keep getting worse no matter what I try (and I have tried many, many, many things).

    My m.i.l. just bought and sent me a bunch of supplements and Dr. Teitelbaum's book "From Fatigued to Fantastic." It's one more thing to try, and I will give it a fair trial. She has FMS and possibly CFS, and it has helped her to feel about 80% better. Wow! What I could do if I were 80% better! Here's hoping...

    Love and prayers,

  4. frosty77

    frosty77 New Member

    My best guess is that it's progressive but not usually fatal. I've had it all my life (I'm 47) and it has gotten much worse the last couple years. I made a few lifestyle changes - I do eat more healthily but occasionally eat fried food or worse and pay the price. My social life is not very active.

    But I'm very highly stressed - working full time, no support for this DD, mother an alcoholic who is getting worse, father-in-law probably has beginning ahlzeimer's and we'll have to take care of him, and in massive cc debt. I only get 6-7 hours sleep a night (which is great for the average person, but with this DD, I need 12+), don't take meds, have yet to find a useful supplement and would kill for massage or accupuncture but cannot afford it.

    And a mouth of amalgam fillings - seriously, probably at least 40 fillings, most of them deep. And amalgam tatoos on the inside of my cheek from the fillings.

    While I think I may feel slightly better without the stress, I don't think it has any impact on progression as I've had super stress my whole life.
    [This Message was Edited on 07/15/2008]
  5. msbsgblue

    msbsgblue Member

    I have now had it 20+ years. Oh yes, I have gone from mild symptoms no pain and fatigue, to mild pain, to mild pain and mild fatigue, to now very severe pain and very severe fatigue.

    If I progress much more I will completely house bound, I hardly feel like going out much now. I hurt bad 90% of the time and I am always tired.
  6. dragon06

    dragon06 New Member

    I have had symptoms my whole life. I have definitely gotten worse over the years. I have FM and CFS and my CFS has gotten really bad over the last year.
  7. findmind

    findmind New Member

    I believe it is because it affects so many systems of the brain and body that eventually (esp. after 20 years) something just gives out.

    Case in point: EBV has definitely been linked to cancer.

    Case in point: I have high EBV titers plus 3 mycoplasmas...I have just yesterday been diagnosed with myasthenia gravis (MG), which can be fatal.

    In my research I read that "viruses and bacterias can deplete acetylcholine" (the cause of MG).

    I am not a happy camper!

    Best to you,
  8. jasminetee

    jasminetee Member

    my Sx were very bad but eventually they subsided on their own for no known reason to me. I did change my diet and I rested all the time. I dropped out of college then and just slept and laid around as that was all I could do. I then went back to college when I got better, became a forest fire fighter for the summer, worked out all the time, played hard, taught school, etc... My health wasn't the same but I could push myself through the Sx I had then as my CFS had become mild.

    11 years later I relapsed and I've been getting progressively worse since then. I'm now 95% bedridden. I miss skiing and scuba diving and hiking and mountain biking. I miss working and socializing and doing things with family and friends.

    I hate CFIDS.
  9. Meg1710

    Meg1710 New Member

    You mentioned someone in your post who recovered with Cats Claw. You also said about this person that "I tend to think she 'just' had adrenal insufficiency". Do you mean adrenal exhaustion because adrenal exhaustion and adrenal insufficiency are two VERY different things?

    Adrenal Insufficiency without treatment is FATAL. Adrenal exhaustion is an oft talked about (but not necessarily unproveable) kind of adrenal fatigue from stress and poor lifestyle choices.
  10. CKater

    CKater New Member

    I often wonder about that same question. So called research tells us it is not a progressive disease, but from everything I read from many, many on this site and others it would certainly appear it is. I am only two years into this, and I do not honestly know if my symptoms are progressing or not. I hope they don't = but as I said it would appear from most they do. I take my meds, and do PT, but still am not well and have many bad flares. I do not think you ever get well. I hope that it can be managed, but at this point I am hopeful, but somewhat doubtful, as somewhat else pointed out you may become immune to the meds that you take, and that does make sense too. It's such a roller coaster.
  11. texasrose204

    texasrose204 New Member

    I have more bad days than good days now. Before i could function more now i have to be very careful fine line between doing and overdoing. (fm) I hate it! I spend alot of time in bed. Pain and exhaustion, can hardly walk.
  12. katiebug61

    katiebug61 New Member

    I am so glad to see this topic. I have been wondering also if this DD is progressive or not. Like someone else mentioned, all the official info says it is NOT progressive, but what I am reading from fellow FM sufferers, it sure sounds like it is.
    It doesn't give me much hope that I can hope for a light at the end of the tunnel. I was diagnosed in April, but I really feel I have had it longer than that, just didn't put all the pieces together! I was believing in the "official" info and that FM can be put into "remission" for lack of a better word. I am hurting today, like a 6-7, and having to take Ultracet and hoping it helps. Is this what I have to look forward to forever? Does it help to eat only certain things and avoid others? I am grasping at straws.
    Thanks and {{{{{hugs}}}} to everyone for their helpful posts!
  13. msnova74

    msnova74 New Member

    I do not care what the MD's say I think it is progressive.
    Mine seems to cycle, but each bad spell seems to last longer with more pain.

  14. Pansygirl

    Pansygirl New Member

    I was just diagnosed with FM in early June of this year.

    But looking back on my health over the last 20 years I see many of the symptoms that point to FM over the years but I had no clue.

    Since getting sick in April of this year ~ I haven't been well even one day. The fatigue and pain have gotten worse for me since April. It's finally hit a plateau at least for the time being anyway. So for me I would have to say it's progressive .

    take care,Susan

  15. msbsgblue

    msbsgblue Member

    Well I don't care what "they" say, I have had this dd 20+ years and oh yes every year I am worse.

    This is the first year that mine is extending to be just as bad in summer as in winter.
  16. YES! Drs. don't realize the pain we go thro' with this dd!
  17. marti_zavala

    marti_zavala Member

    Here are my thoughts:

    1. If left untreated: definitely progressive.

    2. if moderately treated: slows down the progression

    3. if aggressively treated: stops the progression and if you hit several of the right targets - you can go into remission.

    When I first got sick in '99, I was doing #3. Then I relapsed, lost my job and money for treatments and supplements, I was at #1. Man, I went downhill fast.

    Now, I am at #2 for a short term duration, trying to identify better targets so I can hit back at #3.

  18. lrning2cope

    lrning2cope New Member

    I have been feeling worse as the years go by and I keep thinking that this really IS progressive, no matter what the things say that I have read.

    My flares are worse everytime , my fatigue is getting worse , and so is all the muscle/bone/myofascial stuff. I have also had PT and OT which left me feeling worse. I have taken over 15 different meds ( some are for other health challenges) and I am still incapacitated. I wonder sometimes if all my other health problems keep my fibro from getting better.


    LISALOO New Member

    I agree that 30% progress or more. I like to think that there are a ton of people not on this board because they're out living their lives after finding something.

    For me, I feel after 4 years and getting worse, it's progressing. Life just doesn't seem worth it. I keep losing the ability to do more and more things.
  20. Peace77

    Peace77 New Member

    I definitely have gotten worse over the past two yrs. since I can't walk at the park (since my car broke down and I can't get there).
    Also, a pain specialist told me that arthritis and FMJ go together. I believe our tight muscles affect our bone structure. And obviously the lack of movement worse physical condition, which leads to less and less.
    The winters really set me back.
    I remember when spring would come and I would feel at times I'm in remission, not this year.
    We are also fighting with the affects of age.
    Its always a struggle to fight for getting in condition, staying out of flares and having energy. All these tight muscles have to be doing damage.
    Also I can't drive for long distances 3-4 hrs anymore. I'd be in a bad flare.