Do people really get better after 4 years - CFS

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Nov 17, 2008.


    LISALOO New Member

    I've read three books lately, 2 from the us, one from the Uk which said, after 4 years you're hopeles especially if you've been declining from the start. I'm almost at five years, looked at my journals and I can do much less per day.

    Is there really no hope for CFS? I don't feel like continuing.

    [This Message was Edited on 11/17/2008]

    LISALOO New Member

    That was rude and mean. WHy are you on this board? This board is for support

    If I could just snap my fingers to get better I would.

    Ah, I see you joined today. Report you.[This Message was Edited on 11/17/2008]
  3. dannybex

    dannybex Member

    There's a woman in my local support group who was ill for seventeen years. She had gotten better by about 60%, but stayed stuck there for about 5 years, until she started increasing her vitamin D dose about 2-3 years ago, and also started Reiki classes as she got better.

    Before she was so sick she had severe MCS and couldn't even leave the house. Now she considers herself 95% recovered and has stayed at that 95% for a year and a half.

    Plus we have a guy in our group who was sick for 33 years! He is now about 40-50% improved, but had NO improvement for about 30 years until he went to the F&F Center about 2 years ago. He's kind of stuck right now, but certainly doing better than 2 years ago.

    THERE IS HOPE! The 'cure' for each of us will be different however, because we all have different causes and contributors to our illness.


  4. dannybex

    dannybex Member

    Yes "Lukey", what are you doing here? Does it make you feel better about yourself by picking on people who are sick and in pain? Jeez, I feel sorry for you. You must be a real angry person.

    [This Message was Edited on 11/17/2008]
  5. redhummingbird

    redhummingbird New Member

    I would try to ignore statements about it being impossible to recover after 4 years. It's hard I know especially when we're trying to find answers. Many people do get better-maybe not cured but can get better with the right treatments. Figuring out what the right treatments is the challenge.

    I'm glad you reported lukey. I did too.

    Sometimes having hope can be a challenge. There is hope though.

    [This Message was Edited on 11/17/2008]
  6. ladybugmandy

    ladybugmandy Member

    thats old data. people who have been sick many more years than that have recovered.

    michael manson of petsmart is almost 100% recovered with valcyte after 18 yrs of CFS. he could hardly get out of bed when he began treatment.

    there are many on this board who have improved significantly after many many years of illness.

    my former doctor told me of one case he had where a woman recovered after 30 years and went back to school and became a scientist.

    dr. nancy klimas is one of the world's top CFS researchers. during her january interview, someone asked her this question:

    Q: The 1997 Disability & CFS book stated that: "As the CDC has acknowledged, the vast majority of patients recover in the first two years following onset of the illness and are unlikely to recover after five years." Do you still believe this to be true?

    Dr. Klimas: No. The data are not holding up, and as newer treatments come into play, patients with long duration illness should have more hope for improvement or recovery.


    i myself am improving a little now, after 15 years of illness (and believe me - i had many many thoughts of taking my life too so i know exactly how you feel).




    LISALOO New Member

    Thank you for all your replies, I really feel like life isn't living if I'm not healthy, and I feel like I can't get healthy (I've tried everything), so why keep contuiing. What they say is true, without health you have nothing.

    Those people who get better are so rare.if it was larget numbers I would feel bette.r
    [This Message was Edited on 11/17/2008]
  8. TeaBisqit

    TeaBisqit Member

    there is hope. The Peterson clinic announced recently that they believe they have identified the virus that is making us sick. But they said they are a few years away from really doing anything about it. We still have some hope.

    I feel the same as you. I sit here and have no clue of what I'm supposed to do when I can't do anything and nothing works. We just have to try to hang in a little longer. Just the fact they have announced that Gulf War Syndrome is real and it's all over the news today, it will bring us closer to getting answers with our illness. Hope is out there.
  9. llelnino

    llelnino New Member

    I have lost touch with most of my friends and family since becoming sick and it hurts so much to lose contact with people and with life. The other day my mother in law met a lady in her salon who had severe CFS who recovered and is living a normal life. I wish that there were more positive stories but they seem so hard to find.

    LISALOO New Member

    Thanks for the message, but it seems as though everyyear, they think it's one thing, but then they find it's not

    LISALOO New Member

    I've tried every medicine, herb, several specialist doctors, everything I've read, There's nothing out there that I haven't tried. That's what makes it so frustrating.
  12. ladybugmandy

    ladybugmandy Member

    lisa....may i ask how your CFS started and where you live?

    thank you
  13. sascha

    sascha Member

    i've had cfids 9 years now. have tried many and various things when they pop up to try. i was tested for viruses last fall and was found to be very high (VERY) on HHV6, and was also high on HSV-1. i was on a 5+ course of valcyte which took my virus counts way way down, and some of my cfids symptoms went away. it takes a long time to come back after valcyte- i am weak and wasted now- no stamina or energy at all. so next i went on dietary and supplement regimen working with an online doctor; after lots of testing and phone consultations and questionnaires, he got me going on my current food program and prescribed certain dosage levels of certain supplements, and i seem to be making progress. it's too early to make definitive statements about it, but i notice a feeling of being jump-started, and am feeling good enough to see friends from time to time- i was isolated and feeling bad for months and months before. we'll see how it goes, but i AM encouraged.

    really- there are people who've had cfids for years and years who DO improve. don't lose hope. keep advocating for yourself. do all you can to make progress- keep searching- studying- when you find something that makes sense- go for it.

    this dietary- supplement program does cost, but i'm putting it on credit card and going all out to reinstate my health. i'm still on anti-virals, but not ones as rough as the valcyte, although i'm really glad i did that, too.

    don't forget there are a number of excellent professionals now working hard to understand our conditions and find cures. in the meantime do all you can for yourself. it does get discouraging- i've been very discouraged, too- right now the slightest signs that i'm making progress make me so encouraged and determined to do all i can to feel good again.

    i hope you find some answers- if you want to read some great posts on getting guts checked out (based on theory/conclusion that 80% of our immune system resides in the gut) find barrowinnovations past posts. she's been doing the program i am not doing and has made amazing progress.

    the website of the place i'm working with is i'm working with Dr. Farr; the same person barrowinnovations is working with.

    very good luck to you- and please don't despair- best, sascha
  14. romalaw

    romalaw Member

    My heart goes out to you. I have had CFS for almost 11 years. I remember feeling the same way you do after 4 years. When I was first diagnosed I read and researched about the illness constantly. I was confident that I would be one of the few lucky ones who recovered, but by year four it was becoming clear that was not going to happen. At that time, I didn't feel life was worth living if I couldn't recover. I imagine just reading my post and anticipating still having the illness for another 7 years is a very disheartening and depressing thought.

    But here I am and this is my life. I'd just like to share some of my experience and hope it will be helpful. First I had to grieve the loss of my former self, it was a deep and profound grief, I had been very healthy and active with a good mind. The loss was devastating. Gradually, with the help of a skilled therapist who also had a chronic illness, I had to learn to embrace the self I had become because of the illness. Basically, I had to re learn how to live my life. It's not easy and I still have my days when my loss fills me with deep sadness. I have been forced to re prioritize my activities and know what is really important for me. I've learned to take pleasure in small things (watching the falling snow out my window) and small victories (days when I can cook).

    Second, though forever altered, I have recovered to about 65-70% on my best days. I have seen countless doctors and tried many meds, supplements and therapies. Through research and experimentation, I have found treatments that have worked for me. One of the most important lessons I learned is to periodically re visit some treatments, etc. that didn't seem to work and drop ones that are no longer working. My sense if that some tx work at different stages and not at others. For an example, I tried zoloft when I first became ill, it didn't seem to do anything but upset my stomach. I tried it again three years ago and found it to be quite helpful, especially with sleep.

    I hope this has been helpful. Please don't lose hope, even with CFS, it's possible to experience a quality, albeit different sort of, life.
  15. dannybex

    dannybex Member

    ...including ME(!) REST.

    We push and crash and push and crash, rather than listening to our bodies and resting.

    Even if it's for 10 minutes, sitting up, with your eyes closed.

    A therapist I saw a few years ago (who has CFS but is 75% recovered) had about 100 clients, and she herself had "tried everything" as well, but she didn't start getting better until she got really disciplined and made sure she practiced what she called "active resting" where she stopped for 10 minutes, every hour or hour and half or so, and RESTED.

    She had about 100 clients, and only two people got worse over five years. Those were the two who kept looking for this pill, or that vitamin, or this drug, or waited for their doctor to cure them. EVERYONE else that she counseled that RESTED several times a day, EVERY day, recovered to some extent, whether it was 30% or 80%.

    There's a great book -- the best I think on CFS -- called "Defeat Chronic Fatigue", by Martha Kilcoyne. She was about 40 when she became ill, and was sick for about 4-5 years. She too tried EVERYTHING, and every type of doctor, but did not begin to get well until she (and her husband) became very strict about getting 10 hours of sleep EVERY NIGHT, plus taking a two hour nap EVERY DAY -- even if she felt better.

    Three years later she celebrated her complete recovery by climbing Mount Kilimanjaro!

    And then she waited for 10 years before writing the book, as she wanted to make sure she was cured.

    It's available at the library, but you can find interviews with Ms Kilcoyne by doing a google search.

    Hope this helps,


    p.s. Also, I remembered another woman in our group who is now about 85% recovered -- for over a year now -- and she was sick for 13 years.

    p.s.p.s. I personally don't think they will ever find ONE or even TWO causes for CFS/Fibro. We all got sick due to different causes...that's another reason why it can be so frustrating and difficult to find the right treatment. But RESTING is FREE!
  16. babyk902

    babyk902 New Member

    you are absolutely right. what's really strange is that i work for a company where I have to travel alot, and although I love travelling and seeing other places sometimes I just am not up for it and just can't make it through a single day especially after the jet-lag.. but recently I went to Germany and was dreading the trip because I thought I would do horrible with the time change, but since it was pouring every day I was able to kind of relax during the day and take a nap here and there and I actually felt great throughout my whole trip as long as I got a nap in, which I never do at home.. and I really feel like it made a huge difference.

    lisaloo.. i 100% feel the same way you do and it really hit me when I went out with my friends the other night (sober) while everyone was having wine or a few drinks, and for some reason I just envied every single one of my friends bc nothing has ever prevented them from living their life and i realize that every-day worries just really don't matter, unless you're like one of us and you have a health condition, then you really start to appreciate things for what they are. i've had cfs for 4 years now too and it makes me sad bc i remember only 2 years ago i went into remission for about a month (which is a really long time for me) and then it kind of went downhill from there.. but im still about 60% better than I was when I first came down with cfs, and i think there's hope for everyone bc i've heard stories abotu recoveries also btu i think we really just need to be optimistic and not let our worries get to us, bc that's when our health starts getting worse...
  17. ladybugmandy

    ladybugmandy Member

    i am of the opinion that in many or even most cases, some chronic infection is at play. i think they will find this in many diseases.


    LISALOO New Member

    it started 5 years ago, for several months I felt a little run down, after having a flu for the month of February. I would feel good for 5 days, run down for two. I was living in Milwaukee, then moved to Madison. Then I went on a trip to Houston, here I was very busy and got little sleep helping a friend get married.

    After that I got home and felt like I had got a cold or flu virus from the plane. But after a couple of week, nothing was happening. My sinuses were bad so I was on antibiotics for several months. But I kept going downhill fast. The flu that I thought I had caught was 24/7 and increasing. I had to quit work after 5 months.

    I've been to every kind of dr. Rheumy, accupuncurist, nutritionist, holistic, FFC, supplements, antivirals (valtrex and a month of valcyte, before quiting due to it distroying my interstytial cleanses, candida diets, cleanses, you name it.

    I seem to follow all the things that drs say lead to a poor prognosis
    - I have been getting worse for four years never stabilizing.
    - I haven't had periods where I feel like i"m almost 100%
    - It's been 4 years
    - I didn't rest at the beginning since I didn't know what was wrong.[This Message was Edited on 11/18/2008]

    LISALOO New Member

    I think I'm in the grieving process now, but don't know how to end it. I grieve the lost years (age 26 til now) the things I will give up like children, traveling. I don't know how the grieving process will end, unless I get better.
  20. romalaw

    romalaw Member

    REST REST REST, You make an excellent point about rest, that is a major life style change I have had to make, I'm never very far from a couch!! Lying down periodically allows me to function throughout the day. Also that ten hours of sleep is essential. Those two things are absolutely critical.

    The first couple of years, I had that paradoxical condition of feeling revved as well as exhausted and yet unable to sleep or rest. A year on trazadone seemed to break the pattern. In the beginning I also didn't rest, because of I was mis diagnosed with fm and told only walking would help me so I only made myself much sicker. Also, as a person who was usually very active, I really didn't feel comfortable "resting" nor did I know how. (I never napped or lay down during the day in my health life)

    Thanks for that critical reminder.