Do some people just get better?

Discussion in 'Fibromyalgia Main Forum' started by chopindog, Nov 29, 2005.

  1. chopindog

    chopindog New Member

    I was researching and went to the Mayo clinic web site. I will say that I was dissapointed with there description of the illness, and meds suggested etc. They obviously seem to be dismissing this DD like many others. Anyway I know I have read there and on other med sites that under prognosis that some people just get better, usually at around a year to two after onset. Do any of you know of people who have just woke up better one day, or just gradually got better? I mean without FFC help or other programs like it. And when I say better, I mean back to their full functioning prior to the illness.
    I know that up untill my year anniversary I had hope that this would happen, but I wonder if it ever actually does, or is the medical world just wanting to believe it does? Any input? Joy
  2. kylesmom

    kylesmom New Member

    I was told by a doctor once that the average duration of CFS is 4.5 years. I have no idea where he got that number. I still don't think anyone has any idea what CFS really is all about and lots of people get dumped into that diagnosis because their doctors don't know what else to call their symptoms. BUT, if that 4.5 years is accurate, then I'm already above average and should be miraculously recovering any day now! :D
  3. KelB

    KelB New Member

    I've had some fairly sensible info from my various docs, Rheumys and Occ Therapists over the last year. If I remember correctly, they say that CFS recovery breaks down as:

    * One-third of people will fully recover and never have a relapse
    * One-third of people will either have a partial recovery or will cycle through periods of remission then relapse
    * One-third of people will never fully recover and some of these will find that the condition actually gets worse

    I could never get any of them to quote me a firm timeframe for any of the above options. Because they didn't know for sure what causes it, all they could do was go by their own observations. These seemed to amount to "it affects everyone in different ways". Some people recover in a few months (not many by the looks of it!), some take years, some never get there.

    I did badger one Rheumy so long that he estimated I'd be back to full-time working six months after my CBT course. However he did say that I should never quote that to anyone and that it was just his gut feel based on my condition when he saw me. As it happens, it's now just over six months and I'm still only on 20 hours a week.

    So yes, it seems to me that there can be spontaneous recoveries or remissions from CFS. Problem is, nobody knows when or exactly how we can get to them!

    The rules are - there are no rules...
  4. matthewson

    matthewson New Member

    as I was just getting ready to post a similar question! I have been progressively getting better with some bad days once an awhile (seems to be tied to a drop in atmospheric pressure). I have cut my meds down and am back to doing most everything I did before FMS reared it's ugly head after a hysterectomy over 2 years ago.

    I never did get to the point of having to quit work, but still remain on part-time with no intention of working full-time, but that is by choice. I could probably work full-time, but the stress would kill me!

    I wonder if it is because I have no other problems, such as degenerative discs or CFS. Could I have not really had it in the first place? Maybe I just had a long recuperation from my surgery? I don't know, but for the most part, I feel pretty good.

    I would like to hear from others whose FMS was triggered by trauma and have no other underlieing problems and feel that they are getting better.

    Thanks for the post! Sally
  5. Mikie

    Mikie Moderator

    And the sooner one gets treatment, the better the chance of recovery. I don't believe we ever completely get well and even someone who appears to be well may relapse if stress, illness, exposure to toxins, and/or trauma are present later on.

    Some do have the remitting/relapsing cycles. They evidently are strong enough to fight off some of the triggers but not all.

    Those of us who have been sick a long time, and have been able to improve, have aggressively treated our chronic infections, hypercoagulation and have reduced stress in our lives.

    Most of us have from one to seven chronic infections. One of them may have triggered our illnesses or they may be infections of opportunity following another triggering event. In any case, once they go chronic and stealth in the body, they are difficult to get rid of. If left untreated, unless they are latent, I believe they will continue to make us sick.

    I do not believe it wise to depend on spontaneous remission. The earlier one gets treatment, the more effective that treatment appears to be. This is all good news because it means that we can affect our health in many cases. Used to be that docs would throw up their hands and say there was nothing which could be done. We now know that isn't true. The FFC's cropping up around the country are helping people with our illnesses.

    My docs and I developed treatments before the FFC's were around. They have turned out to be basically the same treatments which are provided at the FFC's. What was lacking in my own regimen was the extensive testing done at the FFC's. Improvement is very slow, even with aggressive treatment and things usually get worse before they get better.

    I've been really sick for five years now but looking back, I've been sick all my life. I am far from well but also far from being bedridden and on Morphine, as I was five years ago. My goal is to be able to work part time. Until there is a cure, and I believe there will be, I will just have to be careful.

    I hope this helps dispel pessimism and offers something optimistic. Getting better is really hard work and takes time and patience, but what is the alternative? Good luck to all who are fighting for healing.

    Love, Mikie

    Love, Mikie
  6. lin-z

    lin-z New Member

    Me too!! at least half of what you said...I had a hysterectomy 5 years ago and started feeling noticably yucky about a year later. The pain of fm didnt show up til this year which is when i got diagnosed and i am right now trying to get off some of the meds(specially oxy... bad for me).the pain has changed location but it is somewhat more tolerable. i am praying for a remission SOON before the holidays! All the best to you!
  7. chopindog

    chopindog New Member

    Thank all of you who have replied! Sorry I never replied. I became so ill this last weekend that I could baely get out of bed, and if I did I was throwing up. It was such a nightmare!! Joy
  8. sdown

    sdown New Member

    I think one of your replies was right on the money when they said it makes a difference on how long you have been sick and when you start receiving the correct treatment. Emphasize has to be placed strongly on correct treatment. So many people get put on sleeping pills and pain killers without the doctors conducting the appropriate tests. For example, get tested for the HHV6 virus, lyme disease, etc. Ask for tests on your thyroid, adrenal glands, B12 (get tested for all possible vitamin deficiencies, bateria, MS, etc. My cousin was plagued with fatigue for 4 years before he read an article about testosterone. He asked the doc to do a test and he was seriously low. So he is taking testosterone and is noticing an improvement and started a part-time job. I was tested for adrenal gland problems and I have Addison's disease which is adrenal gland exhaustion. I have a friend who has the nano-bacteria. Many doctors do not go behind the scenes for testing. They do only the normal regular tests. Its important to find a doc who will go above and behind the call of duty and perform all the tests. I also had my mercury fillings removed and went thru DMPS treatments. I was on blood thinners for 18 months for poor circulation. I definitely improved after 2 1/2 years and was able to work part-time but this year I was plagued with sinus infections. I truly believe one can get better. Everybody is different. I was lucky in finding a doctor after 1 year of being sick who knew what she was doing and treated me very well. After 3 weeks on her treatment my dizziness went away. Continue doing your research that is important. Be informed. Good docs are hard to find but there are some left. If you want an interesting site, my doc in the US is at www.carolannrysermd.net She endorses this site very much and orders SAMe from Prohealth. This company has excellent products. Ive been on SAMe for 4 years. It helps the nervous system, joint pain and calms you if your irritable. Good luck to you.
  9. snooker11

    snooker11 New Member

    yup - i definitely think people get better. I know one woman who had CFS and FM for 5 years and went into total remission. I know another women who has had FM it for 8 years but is continuously feeling better. I know another woman who has FM and feels about the same after 3 years. I feel about 75%-80% better and I've had it for a year and a half. Some days it's worse, some days hardly pain at all. I ride it out, taking it easy.





  10. jane32

    jane32 New Member

    I too am approaching the one year mark and am wishing I am one of the lucky ones that gets better at a year. My mom's friend had no treatment and had CFS for 4-5 years. She said the first two years were the worst then her good days just gradually got better. SHe came down with it after a stressful period same as me. After reading your bio it seems you have lived with stress all your life. I know how hard that must be. I worked with depressed and drug addicted individuals. You should be very proud of yoruself for reaching your goals. I am sure you will get better and continue the life you had.
    [This Message was Edited on 12/06/2005]
  11. goldenrod

    goldenrod New Member

    Hi,
    I am 80% better than I was 4 years ago when I became my sickest. my neurologist and infectious disease doc diagnosed me with post viral myalgia but both said they could diagnose me with cfs but did not want to as I would have that label for the rest of my life. I didn't care I just wanted to get better. there was a time when I thought the pain and fatigue would never go but after a year and a half it slow;y went away. I tried many things, both herbal and prescription and it is very hard to determine what has helped the most but over time I became much healthier. I still have bad back pain but my energy is excellent and most of my other aches and pains left. I am still left with residual, very mild pains in other areas but most have left. I think getting my anxiety under control was very important, I was extremely anxious about having ALS or MS as that is what they were sure I had, I even had major atrophy on one side of my body. taking dhea, b-12 shots, b-6 shots, eating mostly organic, exercising as best I could,taking green drinks, etc all must have played a part but I am not sure which was the best.
    take care and good luck
    Mark
  12. firststarr

    firststarr New Member

    Im going on 8 years, no remissions yet. I cant say if it goes away forever, but I still pray every day. So god only knows. Right now mine is baaaaad. The cold weather I hear. anyway ill pray for you too. lightstarr
  13. dononagin

    dononagin New Member

    the first year I could barely raise my head.. to walk to the mail box was too much.. Now 10 years later I work full time.. I won't pretend I'm all better because there isn't a day go buy that I'm not dealing with pain or fatigue. I cope the best I can.. days off are often spent in bed.. I take 120 mg. Cymbalta and Ultram for pain.. Vicodan on bad days..I'm not well.. but looking back at least I'm not bedridden anymore..
    To have a day with no pain would be such a gift..
  14. chopindog

    chopindog New Member

    It is nice to hear that some people do actually get better! It gives me a little hope. I find it so hard some days to believe that I could ever possibly get better, but it is a possibility. I am still learning, for example this last week I felt I was doing better. I went shoping for 4 hours, and ignored my pain and warning signs. Well I ended up in a horrible flare, that brought me to The ER, where I was treated like a big piece of poop!! Remember I am an RN, so it hurt very bad to be treated this way by one of my peers. Anyway so I learned that.
    1. You feel the warning signs, get your but home and lay down. 2.Stay as far away from any ER as possible! I wil never willingly go back to an ER ever again! I refuse to be treated like that!
    3. When in a horrible flair, like my most recent one, which involved nausea, vomiting, horrible pain, tremors, migraine and pure misery. Remember these are just my CFS syptoms magnafied. If they can't fix you when your symtoms are at there normal level, they certainly can fix you when they are at an unbarable level!
    4. Most importantly, don't forget how horrible it can get. See, I have learned these lessons before, but every couple of months i forget, and push myself over the edge!
    Thanks to all who have written, it is so wonderfull tohave so many people out there that I can talk to. I am still just a baby at this disease, I hope to lose it by the time I am a toddler!!! Joy