Autoimmune issues bump

Discussion in 'Fibromyalgia Main Forum' started by upoemaker, Apr 27, 2003.

  1. upoemaker

    upoemaker New Member

    I was diagnosed with fibro two years ago and found that the treatment with elavil did nothing more than allow me to sleep and to help me gain weight. Has this happened to any of you? It seemed that I was following my normal diet and I packed on about 25 pounds in several months. I also noticed joint symptoms that had actually preceded the fibro symptoms. I decided to go to the Mayo Clinic in Rochester Minn. for a thorough rheumatology work-up with a referral from my regular doctor. While there I was diagnosed with rheumatoid arthritis, osteopenia and pernicious anemia as well as fibro. I attended a three day intensive fibro treatment program which was very beneficial. I would recommend it to anyone who lives near there. The other Mayo facilities in the US may also offer it.

    The first thing the Mayo doc did was take me off the elavil. He said that it affects metabolism in some people and will cause weight gain. Since then I've been seeing a rheumatologist and take plaquenil (when I'm not having a rash from it), methotrexate, folic acid, fosamax, myacalcin and welbutrin. When I'm having a bad flare, I take a prednisone burst and it stops the inflammatory rheumatoid process so I can continue to work. I also use anexia occasionally for pain so I can keep functioning on a day to day basis. Sleep problems are now the norm for me so I've basically learned to live with them as best I can. I teach high school English and although I've missed more days than I'd like, I still manage to keep at it. It means so much to me. It's hard though to teach 130 eighteen year olds five days a week, especially when we're close to graduation as we are now. Do most of you also have full time jobs? How do you manage your schedules? I find that I really live to work during the school year. Not much else can be done with my limited energy level. If you have any tips, please share them with me.

    I'm anticipating an early retirement in about a year and a half, but also face the prospect that I may have to apply for disability. Is this a difficult process? It seems to be from what I've read. What sorts of things are required of you before your application is approved? I'd appreciate any info anyone can give me.

    Thanks!
    [This Message was Edited on 04/27/2003]
  2. klutzo

    klutzo New Member

    I wish someone had told me about Elavil beforehand. I put on 46 lbs. in only two months on it without changing my diet. It did nothing for me except make me fat.
    I also have osteopenia,and my mother died from pernicious anemia and a couple of other things, so you have my empathy.
    Disability usually takes at least a year to get. Since you are close to retirement anyway, it should be easier for you to get than for most of us. My lawyer told me my age was a major obstacle to winning my case (I was 35 when I won my disability). You have to get two specialists to agree that you can't work and put it in writing, and you fill out a lot of paperwork and get turned down twice by your state. Then you have a hearing with a federal admin. law judge, where you really should have a disability lawyer, working on contingency so you don't pay unless you win. If you win, you get back pay to the date that documents the start of your illness, so you need to get medical records and submit them as far back as your dx appears. The disability lawyer can do all this for you.
    Good luck,
    Klutzo
  3. Dara

    Dara New Member

    even though I was on a small dose it made me a zombie during the day. I would actually fall asleep at my desk or while sitting and waiting for a red light. It got so that I was afraid to drive. I would fall asleep while talking on the phone at work. Yes, the disability process is a nightmare, at least it has been for me. I have not worked since Nov. 2001 and am still fighting the powers that be. Just to get a head start on this I would start making a daily journal, describing how your diseases affect your every day life, how much work you miss, how sick you feel and all the things that you no longer can do. Also, be sure your doctor documents everything you talk to him/her about when you go in. I know a lot of people have done the disability thing without a lawyer but I just couldn't handle everything by myself, even though my lawyer totally sucks. Be ready to deal with the insurance companies, especially if you have LTD, they will turn everything around to their benefit, insinuate you're not really sick and that you are capable of doing sedentary work. I have great medical documentation and yet they still will bring up something tiny little thing that is in a medical record and take it out of context to use against you.

    Dara
  4. upoemaker

    upoemaker New Member


    Thanks so much for the info. I should keep a journal, although I haven't. You will inspire me to try again. I think my doctors do document, but how can I be sure? I know that my rheumatologist sends letters to my regular doctor, but I'm not sure if she narrates a report to be kept in my files. Is this a standard procedure or do I have to ask about it?