Burning all over / w Fibro, CSF, neuropathies,depression,etc.

Discussion in 'Fibromyalgia Main Forum' started by PainAllDay44, Apr 3, 2003.

  1. PainAllDay44

    PainAllDay44 New Member

    Hello everyone.

    I'm new to this site. There was a point when I visistd various boards in order to feel the connection we all share. Then fatigue, muscle spasms and overall pain took its toll. I've search for support groups in my area - but non are to be found. So, I'm reaching out to all of you. Or maybe just a couple of you to keep in touch via e-mail on a one-on-one basis.

    It's difficult for me to follow chat rooms because of the vertigo. The the amount of time I can actually sit up is approx. one hour.

    Since this began for me in 1997, apparantly there were signs of illness looming, I have had several emotional breakdowns to purge my body from the strain of trying to carry on. And two serious thoughts of suicide, which were short lived because I thouht of my kids and my husband. I meet with a psychologist on a weekly basis. But since he doesn't suffer from any chronic pain, it just doesn't feel like a real connection.

    I do light stretching, meditate, read, write in a journl, read inspirational quotes, etc. But I would like to talk to just one person who shares the same battles. AS the same of all of you, my life was active, fulfilled, energetic. I worked full time, took one class a semester, and cared for the house, bills, husband and kids with my spare time LOL.

    It's going on six years and too many doctors later, and I still don't have the medical support needed to give me some quality of life. For the last six months, I have been burning from head to toe - literally. Prior to Sept. 2002, I would burn in patches on any part of my body. But that's all changed. Due to this, I have to live in satin type pajamas, haven't been out of the house except fora doctors appt, the slightest touch generates a more intense irritation.

    I take 2000mg of Neurontin, 45 mg. Remeron, Ambien, Ultram, Advil (headaches), Bextra. In all the six years,I haven't had ANY relief from pain, a decent night's sleep. But the upside-I'm still positive and I can find something to laugh about. If you don't laugh, you just might lose it all.

    If you are interested in being a Pen Pal, please e-mail at
  2. layinglow

    layinglow New Member

    Glad you found the site. This is a great place for support, and info. There are so many wonderful people here, all experiencing the same debilitating symptoms of these disorders. It is a great place to find treatments and coping skills to add to our arsenals, and support when we just need to vent, and be understood.
    I have added your email address to my address book, and look forward to getting to know you.
    Best wishes,
  3. beckster

    beckster New Member

    Keep reading this board for information and help. The main thing I would say right now is if you are getting no pain relief and no sleep, you do not have the right meds and/or doctor. Its a lot of work to find the right doc, especially when you are so sick and only function an hour a day, but fortunately a lot of people here can shorten the process. A lot of us have been where you are and have improved, but you need a good doc and the right treatments. Hoping things go better.