abnormal nerve sensations/anyone?

Discussion in 'Fibromyalgia Main Forum' started by Donna39, Jul 17, 2003.

  1. Donna39

    Donna39 New Member

    My name is Donna and this is my first time here.I have been glancing through the posts and was so relieved to see that there are other people who are having some of the strange and unusual symptoms that I have been having.I have been going to doctors for years with every thing you could imagine.I have spent sent to every specialist there is and I always get the same answer "ANXIETY!!".At first I try to believe that was it.But as time went on the same symptoms kept happening and it wasn't caused by anxiety.I was having weird sensations that I thought was my heart,I could not explain it to the doctor what I was experiencing,he would just look at me like I was crazy.I went through every test there was because I just knew that I was going to have a heart attack.Tests were all normal.But this was no comfort because I was still having these very strange things happening to my body.I started having panic attacks everyday because noone could tell me what was wrong with me.I tried to explain to the doctor that it was not anxiety that was causing this,but this was causing me a great deal of anxiety.All I was ever given was some xanax and that look like that makes you think that you are loosing your mind.By this time I actually was.I had lost 20 lbs and was scared to be by myself,the panic attacks had taken over my whole life. I thought that I was going to die and nobody could tell me what was wrong with me. Finally diagnosed with fibromyalgia along with other things,the abnormal sensations that had almost cost me my life had to do with nerves.Nerve entrapment in my neck and low back were causing these scary feelings.When they would happen it would scare me so bad that my heart would accerlerate so fast,thats why I assumed it was my heart.I didn't mean to take up so much time and space here,I probably could write a book.Does anyone else here have this problem,The nerve entrapment is caused by repetive stress,like moping or vaccuming.Anything that you overexert yourself with basically.I hope to make alot of new friends here because I am at a point with this DD that I need to talk with someone who understands.My husband is great and supportive,he just doesn't know what to do to make the pain and all the things that go along with it go away.This has really changed our whole families lives,because the kids don't understand why Mom feels like she does most days.Glad to be here,Donna
  2. elaine_p

    elaine_p New Member

    I just have CFS, so don't know that I can relate with your symptom, but I'm sure there are others who can. I'm just replying so you know your post is being read.

    I'm sorry to hear about your horrible doctor experiences! Most/all of us go through that to one degree or another--even after there's a diagnosis we run into docs who don't believe in it and give you "the look"....

    There are a couple great books for fibromyalgia, I hope someone can tell you what they are! I know "From Fatigued to Fantastic" by Jacob Tietelbaum, MD, is good, but it's not geared specifically for fibro.
  3. pam_d

    pam_d New Member

    Welcome here, glad you found us! I can so relate; my earliest symptoms of this illness were ALL neurological ones; tingling extremities, twitching muscles, burning nerve pain; I didn't start getting more typical muscle pain & fatigue til later. While I never got panic attacks, I did get anxiety with each new symptom that made everything worse. And it doesn't help when doctors look blankly at you when you describe these weird sensations; I have found that most doctors will discuss pain & fatigue, but dismiss you or look uncomfortable when you want to talk about neurological stuff. But those symptoms are every bit as "painful" to those of us who suffer from them!

    You will be right at home with this board, Donna!----not everyone here suffers from these nerve sensations, but a LOT of us do! This is a great resource for learning about how to cope with FM, and to get support from others who can really relate to what it feels like to have this 24-7. So I'm glad you found us.

    I find my neuro sensations, now that it's been 4 years or so since I started getting them, tend to go in phases; they don't cause me as much anxiety anymore, the longer I have a "history" with FM, the more I realize that I go through bad flares with them, but that I'll have some better days, too. I try to remember that when I have a really bad day or two.

    A good reading resource for FM is Dr. Devon Starlanyl's book, The Fibromyalgia Advocate, or her first book, The Fibromyalgia Survival Manual. Both books talk about not only the pain & fatigue of FM, but the weird neurological stuff many of us go through as well. And the Fibromyalgia Advocate, particularly, has a ton of good ideas for how to cope better with this illness. It's been my FM bible; the pages are worn by now!

    Hope this helps a little; you are not alone!

  4. 6babes

    6babes New Member

    I am also new to this site. It is so comforting to actually find other people who know what your going through. you finally have proof that your not crazy. i would like to compare symptoms to actually talk to someone sharing my feelings. my email is barks@ezeeweb.com
  5. sierrasioux

    sierrasioux New Member

    Welcome Donna
    Yes, I have all those symptons also. I am like Pam where it is not every single day--comes and goes.
    You will learn so much here. I sure am.
  6. 1by1

    1by1 New Member

    dear donna,
    i am new here, too. but wanted to let you know that i totally understand your wierd neurological symptoms. seems like i am getting more of them lately. this board will be a comfort to you and to me, as i have been lurking around reading lots of posts for a long time before i finally got the courage to come on. hang in there. i sympathize with you. we can beat this together.

  7. Donna39

    Donna39 New Member

    I am so glad to hear that someone else can understand what I am talking about.Mine donot happen everyday either.Mostly when I have done too much or had too much stress that day.Sometimes when I try to lay down and relax my nervous system feels like it has gone haywire. The pain I have learned to cope with,it's just the out of the norm stuff that drives me crazy.Thanks for all the welcomes.I have alot to talk about.Hope I get to know everyone.Donna
  8. zggygirl

    zggygirl New Member

    Hi Donna,
    I'm glad you found out what was causing some of your symptoms. I know my nerves are involved also. My doctor wants to do a MRI of my neck. He says spinal compression can cause a lot of FM type symptoms.
    Last night I woke up and my whole left leg from hip to foot had "fallen asleep' pins and needles feeling you know.
    I get that in my arms and hands a lot when I lie down. They go numb.
    And my feet!!!! They hurt and are always numb or pins/needles/burning. I am told that is caused by nerve entrapment of the tibial nerve.
    But this is just some of the syptoms that spinal compression can cause according to my doctor.
    Can you describe your symptoms in more detail? I'm not sure what nerve entrapment is like for you except scary of course (G) Hope you don't mind me asking. And welcome to the board. I guess I have been on here about 3 months.
    It's a good place to be. But I have to admit that for the first few weeks I got MORE stressed out reading about all these symptoms, possible cures, causes etc.
    But I think I am over that hurdle now.
    Sorry this one is so long!
    PS I started having panic attacks when I was 16 so I know how scary THAT can be!!! I thought I was loosing my mind. Boy was I glad when I could finally put a label on it.
    It was in my 30's when they actually came up with a name for it.
    Take Care,

    [This Message was Edited on 07/17/2003]