What are the real odds of a CFS recovery?

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Apr 27, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    I'm confused - I've had CFS for 2 1/2 years now, and I've done ALOT of research in that time (like many of you I am sure).

    Most of the literature I've read says that 30 - 40% of people will get to a functional level within 5 years and be able to lead a relatively normal life.

    I just went to my doctor the other day, and I picked up a pamphlet about CFS - it said that 80% will recover within 5 years.

    What are the real stats? Who here has had a good remission before? Do you know others who have recovered?

    Why is it so hard to get reliable figures on this?

    Thanks everyone
    Michelle
  2. Michelle_NZ

    Michelle_NZ New Member

    I'm so impressed that you have managed to have 3 children with this! I can't imagine even having one, although I would like to if I wasnt sick.

    My health has been up and down for the last few years, but I did have a level of remission for about 15 months, until July last year. Like you, I still had problems and some CFS symptoms during this time.

    Things have really gone downhill for me since Dec 05, and I made the decsion to stop work almost 2 months ago. I am due back in June, but it's not looking likely at this stage.

    In the 2 months I've had off work my condition has worsened considerably. I'm not bedridden, but I have to limit my "out of house" activities to no more than every other day or so, and even then I cant walk for more than 5 minutes or so.

    Anyway,hope you are having a "good" day!

    Take care
    Michelle
  3. maria37

    maria37 New Member

    I've been living with cfs for over 4 yrs now and in that period of time have spoken to about 10 people who've recovered. Most have been a friend of a friend. The duration of illness have been as diverse as 3 yrs to 15 yrs. The Lady who lived with the illness for 15 yrs has been symptom free for nine years now and has her own business. The one thing they all had in common was plenty of rest and relaxation and of course lots of patience! It's hard to know why some people recover and others don't. Never give up hope.
  4. suzetal

    suzetal New Member

    I have FM and CFS. I had asked my doctor the odds of recovery.She told me that she has no idea .But she has some who recover completely and others that recover and then relapse after a few years.

    All receive the same treatment.I have had FM for 3 yrs and CFS for 1 yr.I have gone from bed ridden to a little bit of a life now .At least I'm not in bed 24/7.

    But I always remember that what works for one may not work for another.

    I wish you well.

    Sue

  5. angeldust

    angeldust New Member

    ..and stayed well. Stress management is key for many of us. I have improved alot but stress still can still knock me off my feet completely. I have always been told that graded activity/exercise, pacing, diet, stress reduction, treating anxiety/depression/sleep disturbance are the keys to recovery.

    I think its hard to get figures on recovery rates, because in many areas sufferers dont get any help, understanding or treatment. Therefore many are left to cope on their own as best they can and certainly wont appear on any cfs statistics.
  6. bunnyfluff

    bunnyfluff Member

    I was bedridden @ first, and I have worked 50+ hrs a week over the course of the past 5 years, so I have been all over the map with this thing. I have had remissions (3 months was the longest) where I felt totally cured, then crashed and went back to CFS Hell. Right now I am somewhere in between.

    I think that it never "goes away". Maybe you can keep it at bay. Or maybe you learn how to deal with it so that you have less bad days than you used to, whatever that takes for it to happen for you.

    Since everyone's trigger is different, I think that makes a difference in what works for them & what doesn't. I get really bad, and a lot of times a med change brings me back. I am looking at the fact that at some point I could become disabled. I think you have to sort of take it as it comes, and not give up hope, but look at it realisticly, too, as something that will be with you and something you have to learn to deal with forever.

    I don't know if this is a "normal" life by any means. This is not the life I had. But every day I do shower & get dressed, I go to work 5 days a week because it makes me feel better to know I can still contribute even tho it's hard, but most everything else has changed.

    CFS has stolen my old identity from me. My old personality, my old body, my old looks, my old zest for life.

    So, while I may fall into the "funtional" category, I would NEVER call this "normal". So, I guess it depends on how they want to count the stats.
  7. Mikie

    Mikie Moderator

    The stats are really not very useful. CFIDS is an illness with many triggers and stressors. A young person who experiences one stressor is more likely to recover than someone older who has been exposed to many stressors. "Recovery" is also a very subjective term. With this illness, it isn't black and white. Most of us, except those bedridden, are somewhere between well and very sick. Many of us have remission periods. I do but even in what I call "remission," I'm not completely well. I still have to be very careful.

    Those of us who have improved have treated our illnesses aggressively on many fronts, especially where chronic infections are involved (almost all of us have from one to seven chronic infections). I do not believe it is possible to heal unless the infections are addressed. What I have been doing is a regimen which took much research and evolved over a five-year period. It pretty much parallels what the new FCC's are doing. My progress has been very, very slow.

    I also have FMS and it was the Guai treatment which helped me so much with that. My FMS symptoms are about 90 percent reversed. That treatment is not a cure and isn't perfect but it's the best thing I have found. Getting the FMS pretty much under control has allowed me to focus on the CFIDS which is more complex and, for me, much more debilitating.

    Until there is a cure, I think the best we can hope for is to recover to a point where we can live fairly normal lives. There was one woman here who said she was back to being completely normal. She is no longer here and so there is no way to know whether her remission was permanent. Because CFIDS is almost certainly genetic in nature, even if someone is in complete remission, I believe exposure to triggers or stressors could bring it on again.

    I have gone from being bedridden most of the time and on Morphine for pain to feeling well enough to start searching SS's Ticket To Work Program to try to work part time. I'm not well. I still get sick and fatigued but compared to five years ago, it is real progress.

    I think we have every reason to be optimistic. Defective genes have been identified, so the first step toward new treatments, or even a cure, are now possible. In the meantime, there is so much we can do ourselves. Good luck to you.

    Love, Mikie
  8. place

    place New Member

    black, white and statistics- Mark Twain
  9. Michelle_NZ

    Michelle_NZ New Member

    It' so good to come and read peoples comments and positive suggestions... I'm finding things really hard at the moment as I'm due to go back to work in about a month and I have to accept that I'm not going to be able to. I need to remind myself that it is possible to recover, that its not a lost cause. It might just take longer than I was hoping.

    Thanks
    Michelle
  10. Shannonsparkles

    Shannonsparkles New Member

    For me, personally, I believe now that I will never recover. We've treated the infections, gone after a lot of the hormonal stuff, changed the diet and changed it again...

    But that's just me. I've got bad genes, and maybe nerve damage. Everyone in my family on one side is desperately ill in one way or another, getting more disabled with each new generation. I've been sick since early childhood, and the disease has progressed fairly steadilly.

    I wonder if I've got a typical form or CFS, or something different, and I wasn't dianosed correctly. There are so many possible causes of CFS, and other conditions that look like CFS, that every case is different and you can't predict what will happen, except to look at what the pattern of your illness has been like. If you've had remissions, maybe you'll have them again.

    I'm just trying to handle one day at a time. So many doctors have told me that they can help me get well that I don't believe any of them anymore. A little symptom improvement in my case is not too much to hope for. Still, I keep getting sicker. I've been housebound for about six years, and mostly bedridden for about four. It keeps getting worse for me - or different, or scarrier - but not better. Hope has turned into, I'll believe it when I see it. Maybe some day I'll see it. But I won't hold my breath.
  11. usanagirl

    usanagirl New Member

    This is an excerpt from a book I have...Traditional medicine has no specific treatment for these diseases. With fibromyalgia, physicians typically place patients on a non-steroidal anti-inflammatory for pain, amitriptyline for sleep, perhaps a muscle relaxant and anti-depressant and then they tell the patient to find a support group and learn to live with it. What is even more concerning is the frequency with which these patients are being treated with narcotic pain medication. Now, they not only have a horrible disease but are also hooked on narcotic pain medication.

    My wife has suffered with fibromyalgia for the past 18 years. During the first 12 years of our marriage she needed to be in bed before 8 P.M. She never had a restful night's sleep and would get up just as tired as when she went to bed. Living with this illness for the past 17 years has totally changed my perception on the seriousness of this disease. Early morning stiffness, mental fog, muscle spasms (my massage technique has certainly improved), fatigue, and pain were daily encounters with which she had to learn to live.

    My wife has always joked that she thought marrying a physician would allow her to improve her health. But I’m afraid I was not the answer. The frustration felt by a physician when he or she is unable to do anything for a patient cannot be overstated. And I now realize, first-handedly, the frustration patients with fibromyalgia and chronic fatigue have with their doctors.

    When my wife was struggling with the most difficult fatigue, she asked if she could try some nutritional supplements given to her by a friend. For 23 years, I would do most anything to get my patients off any kind of supplements. However, my response to her shocked even me. I told her she could certainly try since I had not been able to find anything to help her through traditional medicine.

    Within a week she saw marked improvement and within three weeks she was back to her normal self and off all medications. Over the next year she not only totally recovered, but felt more energetic than she had in years. She has added three to four hours to each of her days. She has significantly less pain and fewer muscle spasms, and her energy level has now surpassed mine.

  12. rockgor

    rockgor Well-Known Member

    some people recover spontaneously. I've had the DD for 25 years.

    I don't know anyone who has recovered. None of my doctors have mentioned anybody recovering.

    Stormyskye is in remission. That's the best news I've heard.
  13. usanagirl

    usanagirl New Member

    If you question your odds of a CFS recovery, I challenge you to get a book called What Your Doctor Doesn't Know About Nutritional Medicine May Be Killing you by Dr. Strand. An inspirational book that is full of valuable information that will give you some much needed hope.

    Your in my thoughts and prayers...

    May you live life in happiness and in health!
    Dena
  14. Chickybabe

    Chickybabe New Member


    Well I have been reading through the replies and there have been some very interesting responses. I know that for myself I have done everything that has been asked of me and if there has been any change it has been that Ive gotten worse. I Have had CFS for Nearly five years now and have been off work for just over a year. I have heard and read of all different kinds of time frames for healing but to be Honest I think that they don't know and as others have said it varies between patients. If you look at the symptoms you can see how varied they are and there will often be very different severities of each of these for different people. All I do know is that for me it is something I have just had to learn how to manage and pray that it will get better.

    Wishing you the best of luck!!

    P.s are you from New Zealand? I'm From NZ too!!!
  15. butterfly8

    butterfly8 New Member



    Like you, I have read all sorts of statistics re. recovery and none of them agree. However, my cfs doc. did say two things, which I have read elsewhere.

    The speed and liklihood of a person recovering from cfs are based on two things.

    1. The younger they are when they contract/develop cfs the more likely they are to recover.

    2. The shorter the time between when they develop the disease and when they start to really treat it (i.e., even if it is only bed rest and vitamins) the more likely the person is to recover.

    Since I did not develop it until I was in my mid forties and since it took over 4 years for the doctors to finally decide that I had it (incorrectly diagnosed as MS, depression, break-down, psychiatric condition, etc), the likelihood of my recovery is small. However, I intent to prove the statistics wrong.

    I hope you do too.
  16. jane32

    jane32 New Member

    You really got some great responses and it keeps the hope alive on this board. I have been sick for 15 months. It took me 8 months to get diagnosed. I would like to think I am doing better or maybe it is just that I adjusted my liefstyle now. I go out when I fevers where before I would sit in bed. I try to do something everyday even if I feel awful. I feel very down when my fevers come back but there is nothing I or anyonr else can do for them but I can have a good outlook.

    My life has changed drastically and dealing with that was the hardest part. I really have no social life and just spend some time with my hubby on the weekends.

    I am now seeing a therapist and take Lunesta. I think these two thigns have helped me the most.

    I plan on joining a gym next week for aquatics but at a very slow pace.

    I know four people with CFS. One was sick for a couple of years but then moved on to have a family and works part-time. SHe still has to watch her sleep and tires easily. just having one drink can send her to bed for weeks. Another woman was bedridden for three years and then just got better one day. The third woman got sick in college and was better in 3 yrs after meeting with a nutritionist she too has to watch her stress levels and her diet. The final woman felt pretty bad for 3-4 years and by year 5 she felt pretty normal. She compeltely changed her diet and even until this day (10 yrs. later) she has no sugars or refined carbs and exercises with a a trainer.

    Although diet is so hard to change it seems to me that it is the best place to start. Now if I can just give up my ice cream! the other thing that is apparent is our stress levels. We need to stay calm and find relaxing activities for our minds and bodies. I plan on trying accupuncture next month. Oh and regular massages have been wonderful as well.
  17. Michelle_NZ

    Michelle_NZ New Member

    It's great to get all your comments.

    Chickybabe - yes I'm from NZ - I'm in Auckland, where are you?

    Cheers
    Michelle
  18. cherylsue

    cherylsue Member

    Anyone here have recoveries and relapses? My first onset was in 2000. Took 14 months to recover almost 100%. Three years later another relapse lasting 14 months. 90% recovery for 11 months until this current relapse in July which has left me housebound and partially bedridden.

    It is very difficult for me to sustain recovery for more than a few years. Too much physical and mental exertion? Not listening to body signals? Too much sugar in the diet? Not enough pacing? Denial of the disease?

    I guess even after we recover we need to be especially viligent. The damage has been done. The vulnerability is there. I feel the loss of my old self.

    I don't believe in statistics. So many people haven't been diagnosed and some eventually go on to recover in a year or so and haven't even made the stats.

    I think some infections need to be addressed and may take longer such as Lymes. Getting a proper diagnosis is key and treating all the infections and inadequacies is important, too.

    CherylSue
  19. Marta608

    Marta608 Member

    Michelle, I think it's interesting that you've gotten "worse" since being off work. My doctor discouraged me from quitting my job because, he said, people become depressed when removed from their social environment. So I didn't quit then but did later and he was right. Could this have any bearing for you?

    As for recovery, isn't that a relative statement? If I could do half the things I used to do I'd consider myself recovered!

    Good thread and excellent responses.
    Marta
    [This Message was Edited on 10/05/2006]
  20. kbak

    kbak Member

    I think your recovery depends on what is causing your CFS. Because we're Dx'd with CFS dosen't mean we all have the same thing.

    I have HHV-6, CMV, and EBV. There is no cure as of today for those viruses. What I work to do is to keep them under control. So in 5 yrs. time I am doing better than I was, but certainly would not classify myself as recovered.

    I guess if you could put those viruses into remission and keep them there you could be considered recovered.

    Many people are Dx'd CFS or fibro or both because it's an easy out for a doc to Dx them as that, rather than digging deeper and finding the real cause. Often people go to multiple docs and then find out they never had CFS at all but some other disorder.

    This is a very complex disease and that's why it's so hard to get accurate figures. CFS's cause is not always the same from person to person so it's hard to get pat answers.

    We all just strive to find what works for us and aim for a better quality of live.

    Take care,
    kbak