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Thread: Diagnosed Fibro for years

  1. #1

    Default Diagnosed Fibro for years

    I have had diagnosed Fibro for years with every trigger point being positive. I am in a ton of pain all of the time. My doctor put my on Savella and I loved it then my insurance stopped paying for it so I had to stop taking it and move on to Lyrica. I take Lyrica 50 mg 3x daily and it helps a bit. I also take Amrix 15mg 2x daily. I am frustrated though because there are days I can't get out of bed. There are days I can't walk even to the bathroom and have to crawl there crying the whole way. I am 38 and get dirty looks when I go to Wal-Mart and have to use a scooter because there is no way I can shop and walk. I hate doing it because I know there are elderly people who have to push on and walk with their canes because of me... I use a cane sometimes. I have also been wheelchair bound twice due to the fibro.

    What frustrates me is that besides the Lyrica and Amrix (which is a muscle relaxer... basically flexeril but time released), the doc will do nothing else for me. He won't send me to someone who can do nerve injections. The strongest pain meds he has put me on have been naproxin and neurontin. They just don't help. I want to see a pain specialist but I really just want help to control the pain. I don't want to be drugged up all the time.

    Any suggestions? Should I see someone else? Maybe go to Pittsburgh? Are there fibro specialists?

    Thanks

    Stacie

  2. #2
    Distinguished Community Member Jo6's Avatar
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    ((((britsbff)))) I am sorry you are in such pain and I am more sorry you are this way when you are so young.

    I'm from the south, so I have no idea about the Drs. up your way, but maybe someone will come along and be of help to you.

    I'm in a super flare now and I thought it was bad yesterday, but today is even worse. I do feel like crying and I do just that some days, but alas, it doesn't help the pain. What I would like to see is a cure for this blasted disease. At least to find something that will help.

    I take pain meds for other problems, but I also take Flexeril, but that doesn't seem to even touch the pain.

    I wish you hope for finding a Dr. that is more in tune with your problems.

    Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  3. #3
    Distinguished Community Member houghchrst's Avatar
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    Hi britsbff I am so sorry that u are miserable. I for one would definitely find a new doctor. Also call your insurance and see if they go by the three med rule or some such thing. That's where if you have tried three meds that are used to treat your condition and they don't work then they will allow for the cost of the med that does. Also many ins. co.s will allow it on a doctors written plea.

    A good rheumatologist may be able to help. I do see a pain management doc. He is in rehabilitative medicine and sports injuries. My fibro is so-called treated and barely tolerable with 75 mg daily of nortriptyline which keeps the fibro pain down to a dull roar. None of my trigger points are really touchable and can drop me to the floor if poked even by accidentbut only one area seems to be the worst. Dont get me wrong, i hurt everywhere all the time but my trapezius, between my shoulder blades, is in constant agony. I have a lot of ice packs lol. Guess I am due for an increase but then that affects some of my other meds. I do have pain meds but try not to take them too often cause like you I don't want to be doped up.

    I hope you find a doc that will help you. Your fibro seems very extreme to me. Fibro can be a comorbid issue so I am wondering if you have been tested for other thing also?

  4. #4
    Distinguished Community Member Beader's Avatar
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    I haven't tried it yet, but I understand that Johns Hopkins in Baltimore has an entire floor of the hospital devoted to Fibro. I don't know where you live, Stacie, so I can't really make many suggestions, but if your doc doesn't take you and your pain seriously, then it's time to change docs. That's the bottom line.

    Sher

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