What are the early stages of this illness? Article depressing

Discussion in 'Fibromyalgia Main Forum' started by jane32, Mar 17, 2006.

  1. jane32

    jane32 New Member

    I am into this illness 14 months and I still consider myself to be in the ealy stages. I just did a search online though about recovery and it says the early stages are under 6 months. It took me 9 months to even get the diagnosis. They say most people recovery with in a year if they are going to recovery...gosh that just made me really depressed. Maybe it is my hormones but I am crying over one stupid article that said people over a year won't recover...aghhh sometimes the internet is not a good place for research!

    It also said that children who have CFS recover..why do you think they recover and we don't?
  2. lenasvn

    lenasvn New Member

    It is a process to come to accept this diagnosis. I understand how you feel. I see in your profile that you have CFS (my profile dissapeared when I put a pic of my kids, and lazy me, I didn't get if filled out again,,,LOL!).

    I am after many years finally heading towards diagnosis, my doc suspects FM or CFS but only the Rheumy in town can diagnose me, and I am waiting for the referral.

    I suggest that you keep researching and read alot of posts here, learn as much as you can. Come here and talk when you need to, vent and ask questions. I hope you get many good replies! By the way, your pic is beautiful!

  3. jane32

    jane32 New Member

    Wakemeup I have CFS that came on suddenly. According to Dr. Bell's book that is the one that recovers better then the sudden one.

    I was under tons of stress, bad diet and hormonal imbalance. I am receiving treatment at the FFC and they address these. I really feel I am on the right track but today for some reason was really hard. I am super positive too. I guess I just hear about my friends doing all sorts of things and getting promoted and I can not even work. I guess any age is hard but I fell liek I am losing all of my dreams. Plus, I really want to have a family and now that seems like a dream that will never come true. I can barely take care of myself...

    I really thought I was doing better too. My good days were pretty good but this week was just awful. I felt so weak and I think it had to do with taking a walk on Monday. How pathetic...I can not even enjoy the nice weather!

    Somedays I just wish I didn't have this.. I don't want it anymore I want to better.

  4. JLH

    JLH New Member

    If you are talking about fibro, I didn't know there was a recovery!!! LOL

    I thought that both fms and cfs were incurable .... just manageable.

    I have heard some people hear on the board talk about being in remission ..... but not recovered.

    Are you on a treatment plan now?

    Get on a treatment plan to manage your symptoms the best way possible for you ..... and think positive!

  5. findmind

    findmind New Member

    I got sick and just stayed that way. But I was in a support group that had several people get very well and back to work (or school).

    If your going to FFC, I think they can get you well. Are you following the people on this board that go there?

    When I first got sick, I heard theres a good chance of recovery in two years if you really build up immune system and rest most of the time. Then, I think major cfs drs said once you get to five year point, its not likely you would get better. But, you know, everyone is different, and i think if we start at any point and do the things that are best for us, we can bet better enough to have a pretty good life.

    Your picture is so beautiful, of you and your husband. I think acceptance is going to have to be a big word in your marriage. Not only will you have to accept what you have to do to manage and cope, but your hubby will have to be flexible and cope right along with you.

    I hope ffc helps you recover and you have a wonderful, fulfilling life!

  6. jane32

    jane32 New Member

    I thought I did except things but for some reason my hormones are all off this week and I can not stop crying...I think lack of sleep does that too! I am much more rational when I sleep well.

    I guess I just never would have imagined my life this way. I was only married 6 months before I got sick. We could not even enjoy ourselves as a normal married couple. Now we live with my parents since the medical bills were so high. My hubby also travels so it is nice to have the company but I just long for a normal life where I can plan. I was a total Type A before all this with huge dreams now everything just sucks ..well at least this week.
  7. findmind

    findmind New Member

    you are really grieving, aren't you? I cry for you. I've been sick for so long, I think ive forgotten how hard it was at first.

    Your post reminded me of how I was an "A" student at a private college when I got sick. All of a sudden I couldn't learn or retain anything. My brain was so badly affected at first. Its not as bad now, but maybe because I have trained myself to read things I want to know over and over again.

    I used to cry so much when first sick. A lot of it was because nobody could understand how I was; I couldn't even explain it clearly. Its hard to look well and be talking to (parents, kids, friends, etc.) and all of a sudden be in a sleeply, dazed, braindead state and have to just lie down or else!

    Make a new life...be all you can be while you have the energy...then rest and recuperate and let others see you will participate fully when you can, but you have limits which can be very unexpected. I've gone to a nap in strangers homes at parties, meetings, etc LOL

    You may be one of the ones who can fight this off; you might pick a protocol for healing from this site, like by Stormyskye, who has a world of infor for us, of FFC protocol. This site has great products to help you feel better, too.

    My best to you,
  8. jane32

    jane32 New Member

    yeah it is like it hit me all at once..and I can not stop thinking about it..maybe that is causing my sleep problems too. Once I wake up in the middle of the night I start to cry b/c I know how bad I am going to feel the next day and it will just be a waste of a day. I am dreading going to bed now..I am worried I will not sleep again.

    I use to have trouble falling asleep not it is staying asleep. I am going to the FFC and was doing better but now I just feel awful. I just do not feel like being patient anymore.

    I feel like my life is over before it even began! I really, really hope I get better. I plan on trying everything..the bills are just so high. I feel bad too b/c my hubby is working so hard and we spend it all on me and my bills. He is a great support but sometimes you just feel like people do not understand unless they are in your shoes.

    I do only go out when I feel my best but then people also do not realize how bad I actually feel. I feel like I am fake now since peopel don't really see me they way I am. I could never go out feeling awful though..driving is really hard when I am super fatigued.

  9. kch64

    kch64 New Member

    Hi Jane.

    When you start feeling down, just grieve a bit and then start trying to focus on the positives. You have a husband and a family that are caring for you.

    Sounds like you still have friends. That's a lot.

    You have to believe that you will get better,no matter what you read. Just because a doctor says that most people at a certain point, won't get better, doesn't make it true.

    Doctors don't know any more about these diseases than we do. they really don't .

    They have medical knowledge, but they can't cure this, so what do they know really?

    I'm sorry that you're feeling down. I'm not feeling too happy this evening either.

    I hope you feel better soon with your mood and your health.

  10. Mikie

    Mikie Moderator

    While it is true that the young, and those who receive treatment early on, have an increased chance of recovery, that doesn't mean that the rest of us can't recover. I was bedridden and on Morphine when I finally came out of denial and started to treat myself with my docs' help. I am making good, but slow progress. I've likely been sick all my life, but I had CFIDS for at least 10 years when I became almost completely disabled. I had to crawl back slowly. It can be done. I'm not well--yet, but I've made enough progress that I post about it here. There are lots of us who are improving. Stick around and learn all you can about our illnesses. Never, ever let anyone tell you it is hopeless or that nothing can be done. Good luck.

    Love, Mikie
  11. zerped

    zerped New Member

    When I began really focusing on CFIDS (after 6 mo. of symptoms), I read that "spontaneous remission" did exist, but would only occur in patients in their first 5 years of the disease. Evidently, there's no record of spontaneous remission any later than that. I'm at the 4-year mark now, so (according to this theory) I have one year left, then I'm stuck with the disease for life. The odds for spon.remission are even smaller for people who have any mental illness issues like depression or ADD (I've got both) or a history of alcohol or drug addiction (both of those too!). Odds are pretty slim for me, right?

    Well, I haven't had a drug or drink in almost 17 years. The odds that I would stay sober this long are in the 3000/1 and up range. I'm "supposed to be" dead. and, last I checked, I'm not. Which doesn't mean I get a "Get Out Of Jail Free" card on everything else for life, but it always helps me to be grateful for something I have to get out of the pain of imagining all the things I could be having now.

    Welcome to this sad, beautiful, angry, wonderful world of amazing people. The rest of the world doesn't see our pain and they don't see our glory; we have to do that for one another.

  12. pawprints

    pawprints New Member

    Hopefully the sadness has passed for awhile.

    I stopped reading those stats because they discouraged me.

    You have been on a good track with the FFC and caught your illness early.

    I have days, weeks just like you described but then something happens and I become hopeful again.

    Hang in there!
  13. Adl123

    Adl123 New Member

    Dear Jane,
    First of all, please don't let what people say abut recovery not happening after a year, bother you. I don't thing such a broad and general statement can even come close to being accurate. Everyoone is different. Don't give up.

    You are very lucky to be diagnosed so early. I first had moderate to severe symptoms in 1968. At that time everyone just thought it was overwork and my Dr. told me to work only a 1/2 day. I did that for a while, but soon began working more and more, until, in 1778, I was working two jobs. I used to pride myself on the fact that I could function well on only 5 hours of sleep a night. I was not diagnosed until 1993, when I had a serious "anaphalectic" reaction and ended up in the ER.

    So, you see, your didagnosis is relatively early. Please keep on trying.

    Big hugs,

    Keep on trudging on.
  14. Cromwell

    Cromwell New Member

    I have flares that last for maybe three or four months then I do OK for a while, then get the flares, normally every November. I never get back to normal,still feel achey, but not the searing pain and fatigue, but there again I am also getting older too.

    This makes it more bearable. Knowing it can come in flares.

    Love Anne C
  15. abbylee

    abbylee New Member

    I am 55 now and have never heard of anyone who was cured.
  16. Hope4Sofia

    Hope4Sofia New Member

    I am young - 33, but I have had this for over 15 years.

    (I have FM). Not as bad as many on this board but definitely life-altering. And it has gotten worse for me, but it also went undiagnosed until this year so I had no idea what to treat.

    Even though I've been hurting for a long time, I just started grieving (or knowing what I've been grieving) since I just learned what this is.

    It is very discouraging to read things like no chance of recovery after a year or five years. I was going to docs looking for answers the first month my symptoms started and for the years following but NO ONE helped - even after surgery. I'm AMAZED it took so long for a doc to think of FM.

    I also get discouraged when I read how bad it has gotten for some. I don't want to be house-bound.

    It does feel like every day is an up-hill battle. BUT!

    WE CANNOT LOSE HOPE. I have to believe I can get better than this. I (like you) have just started looking for a course of treatment. There are so many possibilities for us still. And I do believe we can at least achieve remission.

    I think we have to find ways to love living WITH this affliction as well as do everything in our power to find healing.

    ALSO - I have three children - all after my illness started. It is a challenge and pregs weren't easy but I think it would have gone much better if I had known about my illness and planned accordingly. You CAN have a family.

    Many people have handicaps and still lead amazing and wonderful lives. I think part of that is in the acceptance of our limitations as well as living in hope.

    WOW! I didn't mean to write a book. I hope you were able to get through all of this. Just know you are not alone. I'm in this with you and we will make it better.


  17. jane32

    jane32 New Member

    I really needed a lift. I think of "cure" as remission too and I am willing to make 80% my cure. I actually slept okay last night..well I took 2 mg. of Lunesta at bedtime(which still did not do anything) then I took another 1 mg at 4:00 am. I got 6 hrs. of sleep. Even though I am still very tired I do not feel as bad mentally. I think the lack of sleep was totally making it worse. Now I just need 3 more good nights of sleep to get back on track. Thank goodness for this board.

    I am glad we are all here to lift each other up when we need it most!
  18. KelB

    KelB New Member

    At my Chronic Fatigue Group I was told that the stats for CFS are:

    - One-third of CFS people will recover completely.
    - One-third of people will experience a partial recovery or periods of remission and relapse.
    - One-third of people will not recover.

    Theoretically, if you're diagnosed and given the correct guidance soon enough (in the first six months) then your chances of recovery are better, but this is by no means a hard and fast rule. It doesn't work that way for everyone.

    If you have the illness for more than a year, then statistically, you'll probably have it for at least the next three to five years.

    However, these are all generalisations. Every one of us seems to have our own individual sets of symptoms, reactions to the various treatments/therapies and our own timescales.

    My Occ Therapist said that the most important thing to know was - nobody knows for sure. We should never measure our own recovery against how someone else with CFS was doing, because ever one of us would be different.