Just diagnosed w/ Fibromyalgia. HELP!!

Discussion in 'Fibromyalgia Main Forum' started by klee4au, Nov 16, 2005.

  1. klee4au

    klee4au New Member

    Good morning! I just received a call from my Rheumatologist's nurse, who said all of my blood work came back normal (they were ruling out Lupus). So now my official diagnosis is Fibromyalgia. I am on the following meds:

    Relafen (anti-inflammatory for joint pain)
    Mirapex (for Restless Leg Syndrome - I have it BAD)
    Zanaflex (to make me sleep)

    One of the meds is making me EXTREMELY dizzy, so I've discontinued the Mirapex & Zanaflex until the dizziness goes away. Then I am to start one at a time for 3-4 days to see which one is causing it, and then they'll change that particular one. My Dr. said getting sufficient sleep is the most important thing. I have had major sleep deprivation for almost 2 years, so he thinks my body has been shutting down. In your experience, b/c I'm sure most of you know much more about all of this than I do, is this true? Do you think I'm on the correct meds? I go back in 3 weeks for a follow-up, and I want to be as prepared as possible.

    TIA,
    Katie
  2. lilac123

    lilac123 New Member

    Hi Katie,

    Welcome to the board, you have found a great place to find information and have people who understand all the changes this dd can make in our lives.

    I'm sorry I don't have any great advice as I am fairly new to this too. It has been about 1.5 yrs since I was diagnosed. But, I have suffered with horrible tailbone pain since I was a child and took a bad fall.

    As far as the meds go: My experience was all trial and error. Finding what helped and what did not. I have major back problems so take some heavy duty pain meds now. It seems we all need a different "recipe". I hope you can find what works for you with minimal searching.

    Welcome and will keep you in my prayers.
    Lil
  3. Pianowoman

    Pianowoman New Member

    Hi Katie,
    It's nice to meet you but sorry that you have Fibro. You have come to a good place with lots of information and support.
    It sounds like you have a Doctor who is willing to work with you and that's important. I would agree that getting proper sleep is a key part of the treatment. Those of us with FM respond very individually to meds so you will just hve to try until you find what works for you. Other suggestions for sleep are Klonopin, Lunesta, Trazadone.
    If you have muscle pain it is important to treat that as well.
    I hope you can spend some time here and read posts and learn from others what has helped them. Education is very important.
    Best of Luck
    Kathy
  4. mandy58234

    mandy58234 New Member

    I thought I would try to help you with info if I can. I know what it is like to be searching for help to this new crisis you have been hit with. I have been disabled with an auto-immune disorder similar to Lupus but more rare and Fibromyalgia for 10 years. I imagine you have been feeling bad for quite some time now. I have run the gamut on different types of medications, doctors, treatments, etc. Of the three types of medications that you listed I am familiar with Zanaflex. It may make you dizzy. It did me that way at first, but instead of stopping the Zanaflex try cutting the dose in half for a few days. I don't know how much they prescribed you and when, but you could take it at night, as it will help your muscles relax, and it has a somewhat sedating effect, so it should help you to sleep. Boy do I know about sleep deprivation. I can go many days and nights without sleep. The most was 10 days. I was almost hallucinating, but the immense pain will keep you awake. Stage 4 sleep is of the utmost importance for your body to heal, and is difficult to achieve even with some of the sleep meds. I would recommend to you since you are seeing a rheumatologist to not let them put you on prednisone, as this is a #1 choice of drug for most rheumatologist. High doses of prednisone and chemo-drugs caused a huge amount of problems for me. Such as blood clots developed in the Femur head, this is the bone that fits into your hip socket. It caused the bone to die, which is called avascular necrosis. Now I need a hip replacement in both hips, and I am rather young to have that done. If you have fibomyalgia, I do not understand why your doctor is treating you with anything that will breakdown your immune system. That is one of the things that is different from Lupus where you have an auto-immune disorder,meaning that your immune system is over-reactive and attacking your body systemically. Lupus can attacks your internal organs, connective tissue, joints, central nervous system. The immune system turns against your body, hence the reason to break down the over reactive immune sytem. Fibromyalgia is a very bad pain problem. Where normal pain sensation is highly amplified. With it you need to build up your immune system. I have Adult on-set Still's Disease along with the Fibromyalgia. It is hard to distinguish it from Lupus except through the blood work. You will have an elevated sedimentary rate, with a negative ANA and a negative RA factor. See if your doctor will check you for an active mycoplasma bacteria, Eppstein-Barr in your bloodwork. I have found that the doctors actually caused more harm that good by treating me with so many different types of medications as they all have side-effects. Mostly it was to keep me from taking pain -medications. I ended up from being a very active outdoor person, I am an Archaeologist, to becoming bedridden. I finally moved and found a specialist in Fibromyalgia and auto-immune disorders. I will never go to another Rheumatologist. She treats my pain and sleep problems etc. When I saw that you had so recently been diagnosed with this, I had to say something before they do something to cause you more problems. You are right about needing to be very educated about what is happening to you. Don't blindly trust any doctor without doing your homework first. Anyway this is my first chat room visit and message. Please try to get the above mentioned tests from your doctor. Best of Luck to you. I pray for all of you who have this terrible disease. And there will be doctors that try to tell you it is all in your head. That is the kind of doctor that you walk out on.[This Message was Edited on 11/16/2005]
  5. grandmasheri

    grandmasheri New Member

    I wouldn't wish this DD on anyone and am sorry to hear that your joining us. this board has been a great place to learn what might work. all of us respond diferently to everything and nothing about FM makes any sence. I am on Requip for restless legs. i also had a very bad case. it has done wonders for me and its only been about a month. i'll be praying for you and never hesitate to ask ANYTHING on this board, no matter how trivial, dumb or embarasing you might think it is. remember we are all in the same boat and we all care about each other!
    God Bless Sheri