Will I ever feel better?

Discussion in 'Fibromyalgia Main Forum' started by kansasgirl, Jun 23, 2003.

  1. kansasgirl

    kansasgirl New Member

    I was just diagnosed with fibromyalgia last week and this has been over an 8 month period with seeing many specialists. It's amazing how many won't say "fibromyalgia" and you are sure you have it. I was also diagnosed 10 years ago with Lupus or some Dr.s say I have it and some don't. I'm just so frustrated and depressed. They put my on Bextra, Sonata, Provigil, Gabitril and Serzone. Has anyone had luck with these? Will I ever feel better and back to myself?
  2. pam_d

    pam_d New Member

    I'm in Kansas, too (Overland Park)! Glad you are here. It is amazing how many doctors avoid the "F" word, huh? It took me years to get a diagnosis, so I can really relate to your frustration.

    I don't know about the medicines you've mentioned, but I'm hoping others here can give you feedback on their experiences with them. I've had a lot of luck recently with finding out from an allergist who specializes in FM/CFS that I had many undiscovered food allergies. After months of being on an allergy diet, I'm seeing some real FM improvements----never would have put any of this together myself, I had been eating foods that were not my "friends" for years without realizing I had any allergies. After seeing neurologists, chiropractors, rheumatologists & physiatrists for years, who'd have guessed an allergist would be providing me with the most relief?

    My college roommate was diagnosed years ago with lupus, and now has recently been dx'd with FM, too. Sounds a lot like your experience. I hope the medications you are taking provide some relief for you! A lot of us here have found things that have helped us lead more normal lives, and each of us is unique in what things, or combinations of things, have helped. This board is a great asset for finding out new ideas, or getting support when you most need it.

    Welcome Hugs,

    Pam
  3. Shirl

    Shirl New Member

    Hi, welcome to the board. Can't help, am allergic to most meds, but we do have others here who will be able to answer your questions.

    I wish I could tell you there is a 'magic bullet' for FM, but that is not the case as far as anyone knows as yet.

    What we can do is find what works for us, and at least get the illness under control enough to be able to function as well as possible.

    Many of us here are on different drugs, supplements, etc. Somethings work for some of us, and not for others. Its really a trial and error thing with FM.

    Hope what you are taking does help, and don't get discouraged, keep a good attitude, thats important for all of us. Its hard, but it can be done.


    Again, welcome to the board, and hope we hear from you often.

    Shalom, Shirl
  4. Applyn59

    Applyn59 New Member

    Kansasgirl,

    I have been on Provigil and Serzone but I no longer take them. I was on Provigil for a few months and Serzone longer than that. First of all, don't take the Serzone.
    My dr. told me it was the best one for FMS, but it
    didn't do anything for me. I have since learned that
    it has been removed form the market in Europe.
    There have been about 26 deaths from liver damage
    with this drug. I just found this out very recently.Had
    I known in the beginning I would never have started it.
    Just trying to save you some trouble. I don't think it ever damaged my liver, but I haven't read anything that
    great about it.

    Provigil - I was hoping it would be my magic pill.
    It was not. Many people have been greatly helped
    by it. I was not one of them. I started with
    1/4 of the pill and I think I finally got it up to 1/2 the pill.
    WHen I first took it I thought I was having a heart
    attack. I had fast beating heart and tingling and numbness in both arms. I was petrified. I don't
    think everyne reacts that way, but just wanted to warn you.

    I have heard that Gabitril can really be good for sleep.
    I would like to try that myself.

    Search for Provigil in the search message box
    at the top of the page. People have been discussing
    it here and you can see what they had to say.

    Good luck,
    Lynn
  5. Applyn59

    Applyn59 New Member

  6. catgal

    catgal New Member

    Hello Kansasgirl~~I am originally an Oklahomagirl, but have lived here in the Rocky Mountains for 16 years.

    I know what a relief it is to finally get a diagnosis, but at the same time--I'm sorry its FM. I am 54 and have had FM/CFS (chronic fatigue syndrome) since my teens. I also have degenerative disc disease {DDD}, osteoarthritis, psoriatic arthritis, rheumatoid arthritis, asthma/allergies, and IBS [irritable bowel syndrome].

    Don't know anything about your meds as I've never taken those, but others will be along who might know more about them.

    However, in answer to your question, "Will I Ever Feel Better?" that is the ULTIMATE QUESTION all of us have asked since being diagnosed.

    Of all the symptoms, aching, pain, fibro-fog, exhaustion, and things this disease does to us....the major heartbreak and greatest sense of grief is the *loss of who we used to be*. And this grieving period comes and goes throughout our illness. Even when we get to the point of "acceptance", there are times we grieve a little more for something else about ourselves and abilities that have been lost along the way.

    In the past, the medical community has not been supportive of us and our "invisible illness"; some doctors deny it exists; others won't treat it; other's don't know how to treat it; most don't know much about it, and many sufferers on the Board cannot get decent medical care for it nor medications to ease their pain or get quality sleep. However, very slowly, this negative attitude about FM in the medical community is starting to turnabout, and FM is gradually beginning to be recognized as a legitimate disease.

    Thus far, the disease can be managed, but not cured. It can sometimes go into mysterious remissions--only to magically reappear again. Your best medical prescription is to research, read, and learn all you can about this illness and to educate your family, friends, and relatives. For it is a very confusing disease to people who don't have it or have never even heard of it. They don't understand how you can look good and feel so bad; or how you can do things one day and not the next; or if you're so sick--why doesn't it show up on any tests; or why you seem so tired all the time; why you sleep alot; why you don't do the things you used to do, and the list goes on & on. This site has free pamphlets about FM that you can ask for, and they'll send you as many as you want as often as you ask for them. Buy books or go to your local library and read books on FM; bring them home so your family can read them; research the tons of information on this site and the internet about FM and print off significant information you want to share with your family & friends. But, knowledge about this disease is your best weapon, and it is essential to educate your family & friends about it. For some of our major losses & heartaches have been from losing family & friends over this "invisible illness" because we change.

    We are forced into change in order to accommodate and adjust to this disease. And over time, we become someone we no longer recognize--and we grieve the loss of ourselves...and Who we Once were, and the Life we Once lived. The medical community has said FM is not a progressive disease, but most everyone who has it knows that it is.

    YET, there is an upside to our condition. We learn that a positive attitude is our best allie; how important it is to take care of ourselves, to nurture & pamper ourselves; we develop a greater sense of compassion, understanding, tolerance, patience, assertiveness & advocation, sympathy, empathy, kindness, and a heightened sensitivity to the human condition. We learn to slow down, to appreciate simple things, to see beauty we missed before in our hurried rush, how important the Gift of a Good Day (or any day) is, and that sometimes just getting up in the morning is a fine achievement.

    Will you ever feel better......in some ways yes; in some ways no....in many ways--who knows?

    Finding a good physician that is knowledgeable about FM, listens to you, allows you to be a partner in your health care, and is willing to give you medications to ease your pain and help you sleep, make appropriate referrals, trust you and treat you with respect is essential though sometimes dificult to find. Finding out the combinations of medications that work for you is a process of trial & error. Takes time and a provider willing to work with you on this. As you will find by reading the posts on this Board, what works for one may not work for another. Some use only a combination of supplements, vitamins, & herbs; some a mix of medications and supplements; some use a combination of prescription meds; some use special diets, and the list goes on. Like some (including me) find that caffeine makes their symptoms/pain worse--while others say it doesn't bother them. Many of us have additional ailments besides FM/CFS. It is a rather lengthly period of trial & error to find the combination of things that help you feel better--so don't get discouraged--it is just a part of the process.

    We learn to re-adjust our thinking, habits, routines, and lifestyles by becoming aware of our limitations, stopping before we get too tired, eliminating as much stress from our lives as possible, not making commitments on Monday for an activity on Saturday because we don't know how we'll be feeling by the weekend; learning to incorporate REST or a nap into "every day"; giving ourselves permission to take a "sick day" and lay in bed all day resting, relaxing, watching movies, sleeping, reading a good book, listening to inspirational tapes, and just giving your body a day off; learning how to say "No" when you're tired or the activity would use up what energy you do have. And learning how to deal with Flares.

    How well you will feel has a great deal to do with how well you take care of yourself. Adapting to the fact that you can't do all the things you used to do, or get all the things done in one day the way you used to, taking time to enjoy a medicinal body-soak in the tub instead of a quick shower, and learning how to make your home and housework FM friendly, and even though you're a stay-at-home Mom...you need to delegate chores so you're not doing it all and winding up without any energy to enjoy your family.

    Sorry this is so long, but I read your question and heard my own voice, and the voices of so many of us with that never-ending question that never has a definite answer. Make this Board your second home and us your second family. There are alot of good people here with a great deal of knowledge, experience, and wisdom. We come from all walks of life, nationalities, countries, perspectives, and professions. I'm a psychotherapist, and we have RN's, physician's assistants, artists, social workers, counselors, teachers, and on & on. You will learn a great deal here for everyone has something to offer. Feel free to read all the posts, to respond to any, and to ask questions, questions, questions.

    This is a Wonderful Board filled with supportive, caring people, and we hope you'll keep coming back. Best Wishes & Blessings to You, Carol....
  7. 1Candee

    1Candee New Member

    Hi Kansas Girl and Pam. I'm originally from Manhattan, Ks. but have lived here in Topeka for the past 12 years. How bout you Kansas Girl--are you in my town? I have Graves disease and I will be in your fair city, Pam, at 75th and Antioch next week for an eye specialist appt. Have to get a friend to drive me b/c of the double vision.
    I just got diagnosed 3 weeks ago with Fibro/CFS and possibility of Lupus b/c twice in a row my ANA was high and now we're trying a third time and haven't gotten the results back yet. It is so strange how when one gets one autoimmune disorder, others start to creep in too. My rheumy(one who FINALLY)gave me the diagnoses has me on Celebrex twice a day. I'm also on meds for depression/anxiety and hypothyroid. I had to quit work 11 months ago b/c of all the crazy symptoms and my Graves Disease was a big part of that with the double vision--that combined w/ the fatigue/pain tends to make me feel drunk/stoned all the time LOL. Have 13 years sobriety as we speak so it's really hard to handle.
    I'm in the process of getting disability with the help of a social security advocate--he used to work for SS so knows all the loopholes. Doesn't call himself a lawyer but a representative and is asking for a third of my back disability only if I win. How old are you Kansas girl? I'm 51 and feel like 91 a lot of the time. I wish I could offer you some positive advice but everyone seems to be diffrent on what helps them and the best thing I can tell you is you have found the right place here on the boards. Tons of helpful and informative info and a great support system. i don't write to often but had to get this one in when I saw yet another Kansas girl suffering. (((Big Hugs))) Cat
  8. mickilib

    mickilib New Member

    What a wonderful letter,, you covered what all of us feel and hope for.

    Better understanding from every one , would be the biggest help for all, I call it crying on the inside, and looking normal on the outside,

    Most of us have multiple problems, and the help for one may make another one worse, trial and error, and most are errors.

    Just listening to the news can make me feel worse, a good laugh is the best help.. So sit down and watch a funny , knee jerking movie, or any thing to take your mind off your body, that is , if you can find a spot on your body to sit on that does not hurt. A comfortable chair would be a help.

    I want a falling cloud,, every now and then, wish bathtubs were deeper, so we could float in our homes.. hows that for a wish.. take care all, and may each and every one, have one of their wishes come true, if only for a little while,

    not asking for a miracle here.. !!! xo Micki