Scared - Does anyone get better?

Discussion in 'Fibromyalgia Main Forum' started by nygirl, Apr 6, 2003.

  1. nygirl

    nygirl New Member

    Dear all,
    I'm relatively new to this site and on some level it's been amazing. I really thought I was crazy. For the last two years I've struggled with weekly illness - feeling like I was coming down the flu (my symptoms are like most - run down, achy, joint pain, feverish without having much fever, sore throats, fatigue, insomnia). Twice I was diagnosed with parasites (extensive travel abroad) and felt much better after doxycyclin and another antibiotic. However, since last January I've been clean (have been tested endless times) and am still suffering. My doctor has just diagnosed me with CFS, although it's unclear whether he believes that's real or not (I'm getting a new doctor). I've been on Lexapro for a couple of months and just bumped up to 20 miligrams (for anxiety - no depression aside from feeling bummed about illness).
    Reading this board is like reading my journal - I can't believe how similar some of the stories are. And yet sometimes I worry about reading it - it scares me how long this disease can last. Does anyone get better? I somehow can resign myself to a few years of illness- but a lifetime? Do people have children? Hold down jobs? Right now I'm a doctoral student but I can't work from home forever!
    Thanks for listening,
  2. Hippo

    Hippo New Member

    I can only tell you from my own experience. No, I have not gotten well. No, I cannot work, from home or otherwise. However, I did manage to have 3 children. Everyone is different, though. I am sure there are some success stories out there.

  3. bejo

    bejo New Member

    You really can't get well,but sometimes it isn't as bad as other times.My kids were grown before I got it so I was lucky.But there are people on here that do had kids and manage.Sometimes on the weekend there aren't a lot of people posting so tomorrow you will probably get replies from some who can answer you better on that than I can.
    (((((((hugs)))))))) bejo
  4. Annette2

    Annette2 New Member

    I have fibromyalgia, not CFS, but I do have similar symptoms - fatigue, IBS, etc. I am feeling much better than I have in a long time! I work part-time, take care of my house and exercise (when I can). The main thing is you need to eat properly, make sure you rest enough and also get enough sleep. Another idea is to try to stop eating sugar, refined flour and white rice. Also no soda - regular or diet. Something else - read about yeast overload - since I've been trying to cut out yeast my fatigue is almost gone! But you can feel better if you work at it and learn as much as you can!

  5. kadeedidit

    kadeedidit New Member

    I wish I could say this disease gets better but for me it hasn't. Its gotten progressively worse over the last 12 years. I first come down with interstitial cystitis, then fibromyalgia, then lupus and now arthritis.
    When I first got sick I worked but not the last 2 years.
    When I had to stop working I went into a deep depression and its pretty much ruined my life. I have 2 grown daughters and almost 2 years ago walked out on a 27 year marriage. If it weren't for my oldest daughter I don't know what i'd do. She's my support system......she's strong willed and she fights this disease herself. You see....I passed it on to her.
    Stay strong and believe that some day they will figure out these immune system illnesses and fix us......HUGGLES.....KADEE
  6. nygirl

    nygirl New Member

    Well - not the answers I was hoping for but I appreciate your honesty. I guess I'm going to have to learn how to live with this to a better degree than I do now.
  7. layinglow

    layinglow New Member

    Hi Emily--and Welcome to the Board! I have CFS and FMS. Each person is so different with these disorders, although we have many common symptoms. Sometimes these symptoms wax and wane for some, and others have symptoms that remain constant.
    I have especially found this holds true in treatments. While some may respound wonderfully to one drug, supplement, or herb, there are others who obtain no results. This are multi-faceted disorders, and have many systems in our bodies affected, thus the differences I believe.
    I am fortunate to have gone from totally bedridden, living a nightmarish existence of pain, to one that is still debilitating, but a far cry from where I was. I found a wonderful CFS/FMS/MCS specialists and we have been working madly (sometimes throwing out on thing and replacing it with another) and have tackled and succeeded on many fronts.
    My sleep deprivation, IBS, Candida overgrowth, and depression/anxiety have been remedied. My pain and neural symptoms are under control. Now we are tackling the fatigue and malaise (that everyday feeling of having the flu).
    My theory is take the most debilitating symptom first, and work on each symptom, as you get control over it, move on to the next. I know my life will never be "normal" again, but I do believe I can get relief, and a better quality of life. That has already happened--I am not bedridden in pain. For some vitamins, supplements, and herbs are used exclusively. Others may use RX'es. I have found that I need a combination of each of those--as others do as well. Lifestyle change and Diet are also very important.
    I have 2 of 4 children left at home, and homeschool both.
    Best wishes on your quest for wellness.
    [This Message was Edited on 04/07/2003]
  8. Mikie

    Mikie Moderator

    A couple of years ago, I was in bed most of the time, too dizzy and fogged up to even walk. I have both FMS and CFIDS.

    Through tireless research, help from the members of this board, and cooperation of my docs, I am getting better all the time. I still have to be careful and I do have relapses. I am having one right now.

    I just want you to know that it isn't hopeless. The people here who have gotten better have never given up and try to keep healthy spiritually, mentally, and physically. Most of us learn to manage our illnesses through trial and error. There is a huge learning curve in the beginning and the more you learn about your illness, the better able you will be to empower yourself, especially when dealing with doctors, most of whom know very little about our illnesses.

    Love, Mikie
  9. kredca4

    kredca4 New Member

    Sorry I can't speak about CFS, I have FMS/CMP and that cause's me to have some of the symptoms of CFS.

    I am so Much Better than I was 7 years ago, when I started to go into a Flare, that totally turned my World upside down.

    I lost my Photography Business cause I couldn't go to work, I was sick all the time, thought it was the Flu, plus I was living in Idaho at the time, and the Doctor's there just are not up to Par on anything. So Iwas in a lot of Pain, couldn't go anywhere, lost my Friends, Lost over 70 lb's.

    I went to Ca. found some good Doctor's, yes there are some,
    and then I started chaning my Life. I went back to school, to finish up my Photography Certificate just so I could Teach. Well found out school was harder, couldn't do as well as before, although I still made the Dean's List.

    Well, I was dx about 3 years ago, found some Information on the Internet, I had never heard of FMS. I wound up on this board, and I have learned a lot from the Member's here now, And the previous memember's who have moved on, or are just reading.

    I am now on Meds that work for me, I am able to go Place's, I love to take Road Trips, but I don't drive when I'm on the Heavier ones, so it takes me an extra day, now.
    I eat what dosen't Hurt me, and Idrink Coffee, but only 2 cups in the am, no more after that.
    I excerise, Swim, walk, House work Is Excerise, don't let anyone kidd you about that.

    Then I have day's where I just Hole up in my room, watch TV, read a book, write/dictate actually doing a book, or just Sleep. I rest, because I know I will be sorry if I don't take some down time and take care of me.

    I also think that the Co-exisiting Conditions that some of us have, also plays a Big part in our getting better or not.
    I will never be completely Pain Free, but I don't suffer, if I can avoid it.
    I have DDD., Spinal Stenosis, IBS, GERD, etc, but mostly it's the Arthritis that is crippling me up, and then the FMS makes the Pain unbearable, so I work at keeping the bodyparts moving.

    The Pain may make you want ot Die if you let it go unchecked, so the best approach is to, First Research, then change what you can, and don;t worry about what you can't.
    Listen to others advise, take what you want and don't feel guilty if what works for someone, dosen't for you, we are so different, even tho we have the Same Syndrome's, but we react differently all the same.

    Hope we can be of help to you, I'm trying to Paint my Kitchen, been at it for a month, lol, but I will finish it.
    Or the Hubby will.

    Having FMS or CFS dose not mean that your Life is over, it's just going to Change.
    Have a Good Attutide, hard sometimes, but it does help/

  10. klutzo

    klutzo New Member

    That is the most important question regarding the odds for recovery.
    About 20% of CFS patients recover completely. Those that recover usually do so within 2-4 yrs. after onset. After 5 yrs. with the illness, the recovery rate drops to zero.
    Almost all of those who recover are youngish, and most are under 20.
    The reason is thought to be that they have more growth hormone to fight the effects of the illness.
    I agree with Mel's post about having an "attitude of gratitude", though I know it seems hard right now. I have developed so much self-dsicipline due to my illness.
    There are many avenues to investigate for treatment, and you will learn a lot here that will help you explore them.
    hang in there,
  11. Daffodildeb

    Daffodildeb New Member

    Welcome to the board, Emily!

    I have lived with symptoms of Mitral Valve Prolapse Syndrome, Fibromyalgia, and CFS since the age of 6. Last year I FINALLY found a very caring physician (whose specialty is Fibromyalgia). He put me on a regimen of trigger point injection therapy, a healthy diet (I'm a reformed "chocoholic!"), daily stretching, LIGHT aerobic excercise, multivitamins, magnesium/malic acid, Tiger Balm (the ONLY "balm" that works for ME), flexeril (for sleep), xanax (ONLY as needed), PACING myself, and a CONSISTENT sleep schedule. My physician is also an ordained Lutheran minister and believes very strongly in a Mind-Body-Spirit connection associated with Fibromyalgia syndrome.

    A year after my official "Fibromyalgia" diagnosis, I hold down a full-time job, take a two-hour German Language class once a week, participate in a handbell choir (once-a-week rehearsals), take a once-a-week piano lesson, attend church on a weekly basis, and will be getting married next year.

    Yes, there are days when I feel very tired (usally if I haven't "paced" myself) and have some pain (especially if I'm "pre-menstrual" or have consumed something with apartame in it), but I can HONESTLY say that 98% of the time I feel GREAT! :) I have very little pain most days, rarely need Flexeril for sleep, take a half a Xanax maybe once a month, and can't remember the last time I used Tiger Balm.

    I do realize that EVERYONE with Fibro/CFS is different, and what has worked for me will not necessarily work for another person. (A co-worker of mine has Fibromyalgia and she tells me she is in pain ALL the time. She also suffers from migraines and IBS, neither of which I have ever suffered from.)

    So, please hang in there, Emily! I pray that you will find a competent, caring physician who will assist you coping with your CFS.


    Deborah in DuPont (WA)
  12. starstella

    starstella New Member

    I think there are a small percentage of people who get better. I think a majority have long term symptoms, some are able to manage them better than others. You must keep on top of your symptoms, by learning as much as you can about symptoms and treatments. Utilize support services like physical therapy, massage and chiropractor (if you are a believer un chiropractic medicine) Exercise, diet, nutritional supplements and rest are important. I think if you follow a health routine that helps you to manage your symptoms, and learn to pace yourself in home and work activities, you have a good chance of good results despite this disease diagnosis.
    I have a full time job, which i think is good for me because i enjoy it and it distracts me from my symptoms, i have a harder time when i get home because I just want to crash and be by myself. My husband and children are learning to be more self reliant and help more around the hourse. with this can be challenging, but if you have the personal and emotional resources, as well as good medical care, your symptoms should be livable and maybe even reduced.
  13. dannybex

    dannybex Member

    Hi Emily,

    I was quite disturbed by some of the folks who have said that most people don't recover, or even worse the person who repeated the quote that "Those that recover usually do so within 2-4 yrs. after onset. After 5 yrs. with the illness, the recovery rate drops to zero."

    I'm sorry, but that simply is NOT TRUE. To claim that absolutely no one who has had the disease longer than four years ever recovers is an unfortunate myth that has been circling the internet for several years, based on a faulty study with a relatively small number of patients. I've heard of several folks who have all their energy back (one gentleman, Joe Bentley is 60, and works 50-60 hours a week). Most though, have a recovery that they consider to be closer to 80% of their former energy.

    It is true that what works for one person may not work for another, because these diseases (CFIDS, FM, IBS) have so many different causes and little buggers that take advantage of a weakened state.

    There is a definite connection between ALL of these diseases, so if you have IBS, you may well have FM, (because of the "leaky gut") and/or if you have CFIDS you may have IBS, because of the overgrowth of bad bacteria, fungi, and mainly the imbalanced immune function (most of your immunity, healthy or unhealthy, starts in your gut).

    Anyway, THERE IS HOPE. IF YOU BELIEVE YOU WILL NEVER RECOVER, YOU WILL NEVER RECOVER. If you have some hope, even just a little, you will slowly, but surely improve. You have to be willing to radically change parts of your life, whether it's what you eat, drink, or how much you rest, meditate or pray, etc..

    In my personal opinion, the less (artificial) drugs you take, the better. I say that even though I am currently taking clonazepam (Klonopin), but am hoping to get off of it (by doing a VERY slow taper of it or diazepam). But after reading this morning that it can cause MUSCLE WEAKNESS, ANEMIA, BIRTH DEFECTS, liver problems, etc., I want to stop it as soon as possible.

    Finally, a question: Has anyone here tried Molocure -- for the complete three months, following the diet and all? They claim a high "recovery" rate, but it's expensive, and I was only able to take it for a month.

  14. dannybex

    dannybex Member

    In the documentary "I Remember Me", the filmaker found a group of women who had CFIDS, or as they called it back then, "the thing", who eventually recovered. Some of them were sick for 10 years though, but they DID RECOVER. The problem with the documentary is that they didn't ask the women HOW they got better, but instead focused on other, and more depressing cases. I wouldn't recommend the film, but just wanted to mention it to show that you can get better.

    In fact, near the end, one of the elderly women says "If we can get better, anyone can." (Easier said than done, but don't give up hope or belief that it could happen!)


  15. Bambi

    Bambi New Member

    When I met her her husband was pushing her up the street in a wheelchair. She had dark circles
    under her eyes, weighed 90 pounds, was wearing a shawl in the middle of summer. I thought I was
    meeting someone dying of Aids or Cancer. But in
    reality she was BETTER than she had been! She'd been bedridden for months before I met her.

    She's a stubborn little person, and though she went to every doctor in our area and clear to California, they all gave her pain meds but she'd take one and refuse to take more. She said
    it made her feel "funny". No matter how hard her
    doctors or her friends tried to tell her the
    "funny" feeling would go away in a week or two,
    she just wouldn't take the meds. She eats a very
    restricted diet, only because she doesn't like
    many things. Without exercise, special therapy,
    or anything except a multi vitamin, she is soo
    much better now. She's up to 120 pounds, drives,
    cleans her house, does her laundry..none of which she could do before. Remission? Maybe but
    it's going on five years now. She still gets
    some of the fatigue sometimes but over all she
    is no worse than anyone her age. So I know at
    least one person who got better! Never give up
    hope! Hugs, Bambi
  16. deja

    deja New Member

    I just have a question to all of you in despare here.. Have you tried Provigil to counter CFS?

    I have heard it has done miracles for others, and I haven't yet heard of someone who hasn't atleast minimally benefited from it.

    Please post if you have previous experience with it...
  17. Jen F

    Jen F New Member

    improved significantly.

    It gives me hope.

    The fact that I have been under consistent stress and have had my sleep disturbed frequently hasn't helped on my road to recovery.

    I think it is key to have emotional support, and physically support the body with a good, healthy diet and maybe some supplements.

    With graded exercise and good rest people can improve and return to work.

    I hope that is me soon.

    On the other side of the coin, since some people I know have been sick for several years, we have to find a way to live within our illness, too.

    A couple of the people I know that got well, did relapse later so it's important I think that even if we do achieve wellness that we live a careful lifestyle to ensure no relapsing.

    I hope you realize there is much potential for improvement.

    Some docs think a lot of the problem is in the bowel and if we can get the bowel to work better to absorb good nutrients better and eliminate waste, then we will have more energy.

    I'm looking into that more since I do have bowel problems.

    good luck!
  18. elaine_p

    elaine_p New Member

    are that according to the CFIDS Association, 14% recover. According to the CDC the number is 30% or 40% (or maybe even higher). Based on the CDC's horrendous treatment of this illness, I think I'll discount their numbers.... (But I could be wrong.)

    I've also heard that if you're going to recover, the chances are more likely in the first 5 years, and early treatment (in the first 1-2 years) is essential.

    But since I've discovered this site, I've found LOTS of good info. If we can combat the sleep problem and combat the viruses and mycoplasmas, and the hypercoagulation, I would think chances are great for a recovery. Maybe not 100%, but I'll take less. And then we have to watch our diet and take digestive enzymes and all that, too.

    Of course, STILL nothing works for everyone, but I think they're making headway in research all the time.
  19. tandy

    tandy New Member

    for ME~ I hear some do get a little better,but mostly not. There are varying degrees of disability from immune diseases. Some use a cane to help them walk,some can't walk,some have excruciating pain in the muscles,some have little pain. I personally don't know anyone thats gotten better~ Maybe they're out there somewhere?? If so i'd love to be on the trick to overcoming this!! I can say....never give up and fight this with all you have~ I'm sure if I had given up...I'd be much worse off than I am.
    I wish you the best!! and hope your able to complete your studies~(something i've wished to do myself for a long time) Keep reading the board.....lots of helpful suggestions!! Welcome :)
    Another NY'er.....I'm in upstate~[This Message was Edited on 08/08/2003]
  20. DeMcKen

    DeMcKen New Member

    Regarding Provigil, see my response to Rosesky (or SkyRose, yeah think that's it) . Oh geez, i just looked at it two seconds ago. something like Thanks for the info and a few other questions. In short, it didn't help me but I know it's been beneficial to others.