new symptoms

Discussion in 'Fibromyalgia Main Forum' started by tslanker, Aug 18, 2003.

  1. tslanker

    tslanker New Member

    i've had fibro for 10 years, and spent every day of the on elavil. Was taken off the elavil 6 months ago beacuse wanted to try a new med. Not more than a month off the elavil I started getting this whole body trembling and light-headedness.I know that fibro can cause different neuro symptoms but I've only ever had the intense pain part of it. I'm now taking klonopin for the trembling, which has helped tremendously. The doctor thinks I may be suffering from severe anxiety. I've had tremendous stress in my life for the last 6 months. Just wanted to know if anyone else started out with the pain of fibro and then started getting some of the neuro stuff? Thanks, Terry
    [This Message was Edited on 08/18/2003]
    [This Message was Edited on 08/18/2003]
  2. Mikie

    Mikie Moderator

    If I look back into childhood, I can remember both pain and some neuro symptoms, but I didn't know then what they were.

    I think for a lot of us, when the FMS comes on full blast with the pain, the neuro symptoms seem to ensue and get worse. I also think we suppress a lot of the neuro symptoms until we can no longer ignore them. I actually also did this with the pain for a long time.

    Love, Mikie
  3. tslanker

    tslanker New Member

    I think you might be right because whenever the pain is really bad I don't seem to focus as much on the light- headedness. The whole body trembling thing is the worst. If it were't for the klonopin my legs would tremble so bad I couldn'd stand. Thanks again. Terry
  4. jofla

    jofla New Member

    I have had fibro for almost 11 years now very mild some pain not much but recently have started having alot more symptoms as in trembling, numbness and tingleing. It has kind of taken over me now. I am very sensitive to meds so the only thing that i take is xanax for the anxiety. Doc just gave me flexeril but i woke up this morning with such weird thoughts that it scared me and that was taking only a quarter of 10mg pill. Its pretty frustrating the way this thing takes over, and new symptoms crop up on us. I try to stay positive but it is getting harder and harder for me to do. Hope you feel bettr.

    Jo
  5. JannyW

    JannyW New Member

    Hi Terry,
    I was diagnosed with fibro in 1982 after years of dealing with back pain ... I got everything from "you're making it up" to "you have extreme scoliosis." Once the correct diagnosis was made, I was on an anti-inflammatory for several years until I found an exercise regimen that worked. Unfortunately, I can no longer do what I can when I was soooo much younger :(

    Within the last year or so, I've had pains in my hands & fingers but no swelling. The fibro fog has also gotten much worse ... my short-term memory is basically non-existent and I rely on my DayTimer and my parter to keep me on schedule.

    I've also developed a sleep disorder and have RLS ... my partner says I run in my sleep.

    Jan ^v^
  6. Shirl

    Shirl New Member

    I started with the severe pain, then it let up, but I was always living with a sort of mute pain in my back, shoulders and chest. Then it would come back like a bolt of lightening ( not sleeping was always a problem, since I was a child).

    As for the anxiety, shakes, headaches, IBS, etc. It really came years later. I have had FM for over twenty years, I got the first actual anxiety attack about 10 years ago. I woke up in the middle of the night, scared out of my mind, shaking, sweating, disoriented, just a total mess.

    I did not have a clue what was wrong, what I was afraid of, why I was shaking, sweating, heart racing, etc.

    I had never before in my life felt like this(I am not a person that is afraid of much of anything except snakes and there was sure no snake around!).

    I was checking all the doors and windows in the house, and finally I MADE myself stop and try to reason what made me feel like this, and I could not figure it out, other than I was just plain scared. New experience for me. It was hours before I felt anywhere near normal .

    I have never had an attack that bad again, but I do get that feeling that one is coming on. Its a frightening feeling, but I always try to figure out what is the cause of it.

    Stress will do it, anger, worry, all those stress related things will trigger a panicky feeling.

    You said you had a lot of stress in the last six months, that is sure a signal for your anxiety. That will sure do it.

    The Klonopin should be a tremendous help for those
    feelings. I have never taken it, but do read a lot about it here on the board.

    Like Jofla, I take a low dose of Xanax, as most meds do not agree with me. But I get along well with the Xanax once a day in the evening so I can relax before going to bed, or if I feel that crazy feeling coming on, then I will take a small piece under my tongue, it works fast that way.

    This is going to sound silly, but when I got that first attack, I though God was punishing me, as I had a friend that was afraid of her shadow, and I used to always try and get her out of being so scary.
    She would not leave her house without her husband, she always thought someone was going to break in her home (she was married to a Police Sergeant!), every dog she saw she thought was going to bit her, every day of her life she thought she was going to die, if she ate or drank anything she had to wash the clean cup or dish, I mean this poor darling lived in total fear all the time, day and night. I tried to help her, but could in no way understand how she could be so fearful of just everything. Yes, she was going to a psych, plus many doctors, she was always taking Valium three times a day, and she was still in that condition all the time.

    Believe me, after that one experience with unfounded, unreasonable fear that I had, I was the most compassionate friend she had! I prayed to God never to let me feel that terrible fear again. I never had an experience like that since, but I sure never forgot that one time!

    I sure hope you feel better soon, maybe after you get whatever is causing the stress over with it will go away, I sure hope so.

    Shalom, Shirl


    [This Message was Edited on 08/18/2003]
  7. tslanker

    tslanker New Member

    Like you, I just started with the neuro stuff and I have to say it's the scariest thing I've ever dealt with. I went to the ER thinking I might have MS. Was admitted for two days for them to tell me that I was letting the symptoms worry me so much that I was bringing on panic attacks. When my whole body started trembling it was over a period of about six months. Now I take Klonopin for the shakes, but if I miss a dose I immediately feel the shakes coming on. My Dr. swears it's the fibro that's doing it. Hope she's right. Thanks again for the help. Terry
  8. tslanker

    tslanker New Member

    I was like you. While I was on Elavil for 10 years i always had pain but I could deal with it. I always read stories about everyone else with the neuro problems and I always felt fortunate not to have them. I guess I spoke too soon. I would rather have the pain than the trembling and light-headedness. It's so scary! Thanks for your post. Terry
  9. tslanker

    tslanker New Member

    I have pain in my hands too. And the fibro-fog seems to get worse every day. Some days I don't even want to get out of bed because I don't know what the day will bring. When you get new symptoms it's scary. Terry
  10. tslanker

    tslanker New Member

    Thanks for you words of wisdom. It's scary when new symptoms appear. I just spent two days in the hospital having a very wonderful Dr. convince me that the fibro was what is causing the neuro symptoms. I just read your bio and thought I'd tell you that my father was a Baptist minister before he passed away. I am a faith believer, I couldn't get up in the morning without God's help. I also take xanax when things get out of hand, but the klonopin has saved my life. I don't tremble near as much as I did. Thanks again, Terry
  11. Shirl

    Shirl New Member

    You are so right, there is no way I would have lasted this long without the Lord. Morning, noon and nightime too!

    I have been a S. Baptist now for almost 35 years. If you are interested we do have a Worship Board on this site too.

    Just go to the 'Message Boards' link at the top of this board, and it will bring you to an index of all the forums, just click on Worship. YOu will find me there often!

    Take care, and I am glad you have found something to help too.

    Shalom, Shirl
  12. Momskelleygirl

    Momskelleygirl New Member

    since I was a teenager all i remeber was pain, up until a few years ago. it still took two years (one of thos of pure h**l in and out of the hospital for sickness and test for four months,) and finally this year to put the pain, neuro, and other puzzle pieces together for the dx of fibro. but I diffently remember pain for years first.
    kelley
  13. mamafrey

    mamafrey New Member

    last fall. Have been to a couple of neurologist, they all came to the conclusion its FIBRO! My fibro specialist swears i am in early MS. Who knows. My legs and arms go weak, i also vertigo, burning in the brain and spine, numbness and both sides of the body now, and my mind is going. I am only 41. There are alot of times i cannot drive because i feel like i am drunk. Yesterday, my oldest daughter was driving me around because i was unsafe to drive, when we went to her drs appt. we came out an hour later and i had left my car door wide open, this is after we went shopping. Praise the Lord nothing was stolen. I just can't be trusted to do anything anymore. It scares me to death cause i don't know what i am going to be like 10 years from now. All the drs. say stay on the neurotin but i still get completely numb. I have been told by both neurologist and my Fibro dr. this is something i have to accept and live with. I just don't know if i can, because i truly believe some of this can be helped. But who knows, i am so sick of going to drs and have loads of test done and NOTHING shows. Sometimes i wonder if it is all in my head, but i know deep down its not. Anyways, sorry to ramble but it helps knowing there are other people out there like me with no answers or i think i would be crazy. Take Care of Yourself and God Bless You. Mama
  14. tslanker

    tslanker New Member

    if it's like acheybrakey said. Can you really take a med for ten years and then come off of it and not have it affect your body? That's a long time to have a drug in your system then yanked away over a period of two weeks. Thanks for all the help guys! Terry

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