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  • At Last People Who Will Beleive Me When I Say I Hurt All Over

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    Old 05-20-2005, 03:24 PM   #1
    brightonbelle
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    At Last People Who Will Beleive Me When I Say I Hurt All Over

    Hello everyone
    i am new to this site, and am releived to see that there are people out there that have the same pain as i have...(not that i want other people to suffer) its just that for 2 years now i have had such alot of pain in my joints and have only just had a diagnosis of fibromyalgia. I thought i must have something like RA or worse bone cancer so i was relieved to find out what i actualy have.
    I suffer with trigeminal neurelgia but thankfully that is in remission at the moment.
    My doctor has put my on epilim (an anti-epilepsy drug)..i have been taking these for 4 weeks now and am feeling 60% better. I have none of the intense grabbing pains or very little. Has anyone else taken epilim for FM. I take tegretol for the trigeminal neurelgia...but not taking at the moment. I still feel extremely tired most of the time..but am sleeping more comfortably now...and dont feel like i am sleeping on lots of pebbles. Dont know how long this will help me, but its wonderfull having less pain. I can even do some cross stitiching and a bit of knitting for a short while now before my hands seize up.
    my best wishes to all

     
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    Old 05-20-2005, 06:24 PM   #2
    Glojer
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    Welcome Brightonbelle!!!

    You will find some vey caring people on this board, hope you enjoy your time with us. Jump in anytime with info or questions, we are all about helping and support.

    Glojer

     
    Old 05-20-2005, 10:21 PM   #3
    girl75
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    hello brightonbelle, my name is robin, nice to meet you. i was dx with fibro 2yrs ago but have had pain for 10yrs now. i am 29yrs old how old are you? sorry you are having to go through all this too. right now i am pretty much at a point where i have no pain doc because i got fired from my last one. i am trying to get referred to a new pain doc but it will probably take 1month or so. my family doc said she could not give me the pain meds i was taking from my last doc because they don't do long term narcotics. all she could give me scripts for was ultram and skelaxin. i figured that i would try it because i really had no choice. so now it has been 1wk today i am really hurting. those meds are not helping me right now. the only option i have is to go to the er to get my pain meds is what the np told me. i am trying to deal with the pain for as long as i can because i really hate going to the er. anyway sorry to bore you with all that. anyway welcome to the boards. i really love this place and the people on it. they have helped me through alot of things that people here in my life just don't understand. well hope to here from you soon.
    your new friend,
    robin (girl75)

     
    Old 05-21-2005, 12:37 AM   #4
    Jooner18
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    Yes welcome to the boards, and good luck.

    Just out of curiosity, is it possible to get FMS in your neck muscles? My neck directly to the right of my adam's apple has been bothering me a lot. Not an intense pain or anything, but dull and ominous, that's for sure.

     
    Old 05-21-2005, 05:58 AM   #5
    brightonbelle
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    hi jooner18
    was hoping someone would respond to my post...thanks. I have had extrememly bad pain in my neck...doc said it was tension..but it is the same sort of pain i get in my elbows knees hips etc....maybe it is all tension...i dont know...i seem to be going round and round with this thing...so many opinions of what causes fm etc

     
    Old 05-21-2005, 06:16 AM   #6
    Tyneyboy
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    Jooner, I don't think there is a spot where you can't feel pain with fibromyalgia. Pain in a line from your neck into your shoulders is really common with fibro, it's also common in myofascial pain. Stretching and holding will sometimes help. I often end up using pain rubs on that spot.

     
    Old 05-21-2005, 07:07 AM   #7
    MomwithMS
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    BrightonBelle, I have MS, fibro, and rheumoid arthritis. . . and yet THIS is my favorite place to post. I have *always* had more pain than any one (single) of my other diseases could explain. MS affects muscles - so why did I have so much joint pain? RA causes joint pain, but the methotrexate helped the stiffness but not the other pain. Why? Well, the answer is fibro!

    My thought is if you can find a friend who understands HOW in the world your hair can hurt. . .then you've found gold.

    anyway, welcome! And you have found a place where others understand and experience chronic pain.
    __________________
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    ((( Les )))

     
    Old 05-21-2005, 01:43 PM   #8
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    Hiya Brightonbelle,

    Welcome to our wonderful world of superb people who will listen, talk, laugh and cry with you if you need it. You are truly in a good place here.
    I like many others here have fibro as a secondary problem. I have SLE, and a host of other problems associated with it. MNM, which is the "twin" of MS, fibro as I said, and Uncle Tom Cobbley and all.

    Come here though and be amazed at what a marvellous bunch of friends you will have.

    Is the Brighton bit the UK one? Just wondering.

    Speak to you again soon I hope.

    goldenwings
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    Old 05-21-2005, 08:12 PM   #9
    dazedandconfused10
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    well I can certainly relate with hurting all over. I fractured my neck about 18 years ago and have never stopped hurting since. At bad times, it literally feels like its flowing thru my veins (probably thru my screwed up nerves). I'm sorry I don't know alot about those meds! I'm also not sure what trigeminal neurelgia is? What is it compared to fibro? We can all certainly relate to pain and tiredness. I was talking to a neighbor who hurt her neck and she doesn't have chronic pain, but something about walking around in pain, drains you, she even said it. Boy it made me feel better. Can the meds be making you tired too?

     
    Old 05-22-2005, 04:18 AM   #10
    brightonbelle
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    hi curlynhmom
    a fractured neck...ouch!!! trigeminal neurelgia is to do with the tirgemianl nerve in the in front part of the brain.....causes severe pain in face (in my case lower teeth) like electricity bolts of lightning going through your jaw. sssssshhhhhhhh (in remission at the moment) i have nearly passed out with pain in the past. The rhumatologist said that people with "TN" and rhaunards somtime suffer with Fibro.....i found my GP more helpfull...rhumie seemed to dismiss how much pain i was in and said " well some people suffer with headaches, some with gastro probs..--- and you suffer with joint pain" might as well have said "get on with your life its not that bad" yeah right! makes you feel you are imagining the pain, stiffness, shooting pains. Think the meds do make me a bit sluggish, but rather that than having the full blown pains. thanks to all of you who have wlecomed me to this site...i certainly dont feel so alone now.
    GOLDENWINGS (love the name)
    yes it is brighton uk.

    Last edited by brightonbelle; 05-22-2005 at 04:19 AM.

     
    Old 05-22-2005, 05:50 AM   #11
    goldenwings
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    Re: At Last People Who Will Beleive Me When I Say I Hurt All Over

    Hiya Brightonbelle,

    I was in Hove last week. Sorry, off the point here.

    Trigeminal Neuralgia, wow to have it is to know it. I'm not glad you have it of course, but its good that I know someone else with it. It's hard to explain how it affects one isn't it? The pains in the head, the cheeks, the eyelids even. Even to touch the area is agony, I find. The best bit is when it hits out of the blue and you scream out. You get some funny looks don't you? He he.

    I have SLE so I feel my nerve bits like this are as a result of my CNS involvement with the lupus. I don't know about it having anything to do with fibro, I have had TN for absolutely years, but was only diagnosed with fibro about 1 year ago, so I'm not sure about what your rheumie is saying, he seems to be making a blanket assumption there. Mind you I'm not a medical doctor, so I shouldn't speak so. I do though have quite a bit of experience of rheumies and so on.

    One suggestion, if you can change your rheumie. You don't need someone like that. You need someone you can talk to and ask questions of until you get the right answers for you. If you feel uncomfortable, then it's just not worth it to have someone like that treating you.

    Hope you are doing ok today.

    goldenwings
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    Last edited by goldenwings; 05-22-2005 at 05:52 AM.

     
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