Please need your advice/support/Pain Inquiry

Discussion in 'Fibromyalgia Main Forum' started by cupimick, Dec 14, 2005.

  1. cupimick

    cupimick Member

    Hi All,

    I haven't posted since, I have been in an unending flare of unbearable muscle pain and aches for months. Please someone cut my arms and legs off.

    I have read and read on Fibro and even though its listed in my med record as fibro, since they couldn't figure out what else after dozen of tests/specialists. Are there others that question a possible misdiagnosis? I really need to hear from you.

    I used to love and enjoy life but this monster won't let me. The hardest part is when you were like many on the board high functioning career person who lived a very active lifestyle/powerwalking was my love.Now I can't even walk around the block.

    Please forgive me if I am rambling its been so difficult to accept but if I only really knew that what I am suffering with is similar to others here.

    For those of you Fibro sufferers.Can you please tell me if you have unending bouts of severe pain or muscle aches that do not go in remission?

    I read that most have flares but they go away and you have good days or maybe a remssion period. I haven't had that in fact I have maybe a few hours a day where I feel like my old self and then the monster comes back and I feel helpless.

    Sorry that I am taking so long to get to the point please understand. My pain started after what seemed to be the flu. I never really got over it. What it left me was an insomniac, with severe muscle aches/arms/legs. Is there anyone out there that has the same symptoms as me, I feel so alone with this malady. Many of the posts don't seem to sound like what I have. I also had the worst swollen glands when I furst got sick 4 yrs ago but that seemed to go away and now its just a few times a year it acts up along with the chills which I am having now that feels like the flu.

    Any one can you just respond in some way, so I don't feel like the only one with this debilitating disease.

    Thanks for listening,
    P:S My husband and are trying to work things out but he just lost his job two weeks ago. I hope 2006 does not get any worse.
  2. evie9513

    evie9513 New Member

    I am one and I cannot recall a day in over 5 years i did not have pain. the flares often scare me as surely this must be what some cancer patients feel.
    I have had to have pain patches (ick, makes ozzie osbourne look like a scholar compared to me), makes me itch and throw up so its a trade off...........i find wrapping oneself up like a taquito in a twin heating blanket is often comforting and if you have hot the darn fan full blast in your face or feet......those tend to me my body temp gauges!
  3. jole

    jole Member

    Cupimick - You sound a lot like me. The pain is constant, and although I had aches and pains all my life, when "it" really hit I thought I had the flu. Then I got the flu again and again, but the aching never went away. In fact, it got worse to the point that I finally knew it had nothing to do with the flu.

    Now the pain is constant, but I do have days when I can do a few things, like clean a room in a day. I work, but it is a desk job and very limited reaction with others. I take a lot of pain pills to do that. I also could not sleep for months on end, but that has gotten better to the point that I can't get enough rest no matter how many hours I sleep. Can even fall asleep at work if I don't watch it.

    For me a flare is when the pain (Which is always there) gets sooo bad that I can't walk without looking 90, can't think straight, and can't remember. It is nearly too much of an effort to breathe even. That's what I consider a flare. It's awful, really unmanageable even with medication. The only answer to that is to go to bed and stay there for a day or so. Sometimes lasts bad for 3-4 days, then will get better, back to the "normal" pain and feeling miserable.

    Hope this helps. I know none of us feel wonderful, and yes, in the beginning I really doubted my Dx. I was so weak and shaky, with terrific muscle spasms in my back, thighs and left arm. Still have them at times, but knowing what it is makes it easier to deal with.

    Hope you find the answers you need.

    Friends -
  4. blkkat

    blkkat New Member

    hi! i'm sorry you hurt! and stressed !! im 42 and i know now ive had this since i was 5 after a car crash.i got bad headaches and just not normal feeling. but last year while mopping i pulled my back out, the next morn. TOTAL PAIN!!!!! had all the tests- MRI, pain-nerve damage test. first they said before my MRI it was a disc in my back, months of PT& chiroprators and after 4 drs. i have fm. i have pain at a 9-10 every day!with pain meds. and neurontin. i have non stop numbness in my legs/feet/arms plus shooting tingling ice like pain. i cant sit or walk and if i do only 10 mins at a time, i feel like i have the flu all the time!!! and if i get stressed or if i get a virus on top of this well just shoot me please!!! my lower back hurts soooo bad!!! im sorry but i could go on and on, and im here to support you!!! yes this DD is HELL!! but if you dont have anyone to talk to PLEASE talk to us, we feel your PAIN and we really CARE about YOU!!!! i hope this made some kind of sense! HUGS!! BLKKAT
  5. kellyann

    kellyann New Member

    I hurt constantly too. Have you been tested for Lyme disease? If not, maybe you should. The symptoms are very much alike for Lyme and Fibromyalgia.

    I hope you do find some relief!

  6. cupimick

    cupimick Member

    Dear Friends,

    I can't tell you how much it meant to read your posts and to take the time in your pain to try to help me in dealing with this dd.

    I have been tested for lyme and thought it was what i had but the test came back negative and I think I was retested,same negative.

    You have all made me feel a little better and not so alone . Its hard when you cannot relate to anyone . Friends don't understand and family is worse so your support means the world.

    As much as i hate it I am forced to rely on taking the darn pain meds which I hate. I backed off kadian which is morphine and went back to lortab which takes it down from a 10 the worst to a 7.

    I keep hoping for a remission period for all of us but until that comes, its great knowing I am not alone and crazy. You've restored my faith and thanks for being so caring.

    P:S I hope all of you who are celebrating the holidays ,please have a safe and painfree one!!!
  7. smiffy79

    smiffy79 New Member

    im sorry this is getting you down. i ve had this since i was about 8 and so have grown up with it but i dont remember a pain free day in many years the nearest i came to it was on honeymoon for 15 glorious minutes in a steam room.

    im sorry too about your husband and his job,it couldnt have come at a worse time.

    with me/cfs it was called 'yuppy flu' for a reason and that is when we become to laiden when its all been too much and we havent really listened to our bodies we come over as though weve been ill in bed for a week, sore throat sore dry eyes runny nose and an all over weakness and the glands in my throat are like swallowed golf balls but it can all be gone in an hour or stay with us fordays, i think this is what your experiensing when you come over unwell.

    learn to take care of yourself and pace through your week i have found by doing this that particular side of me is lessened but be warned it can creep up fast, plus do you notice your headaches get worse? mine booms and i can hear the blood whooshing through my ears.

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