help please
 

Hi all
Im new to this thread, but have been hanging around NT for a while, I have myasthenia gravis. On my last visit to my neuro he asked how my "pain" was going, I said it hadnt changed, He didnt mention fibro. In a letter to my GP,(he sent a copy to me) he said I probably have a form of fibromyalgia.

I am sitting here trying not to cry, because Im in pain, and wanted to ask, with fibro, can it affect your teeth and jaw, they are aching something chronic, my arms/shoulders are bad at the moment to.
I just cant bear to go back to my gp about it, I get the feeling Ill be told Im depressed!!!!(when I went to see him, a coulple of weeks ago, I mentioned the neuro letter and the fibro, and the fact he hadnt mentioned it, the gp said, maybe he was waiting to see how things progressed, which I cant understand because this pain has been around on and off for years) Sorry to woffle on, but I wanted to get some first hand experiences. thank you

I'm so sorry that you're in so much pain, redtail.
Just wanted to send you a message before I get offline to get dinner organized here. We're ahead of you over here on the east coast. I've got some major problems with my neck arms and shoulders myself. Pain can wear a person down. I'm sorry to see you're so sad. Hope you get some real answers soon and that your doctors work out some way of helping you deal with the really bad pain days and nights.
take care there. :hug:
Lara

:) :hug: to redtail i am sorry to read you are in so much pain. I have fibro.,myofascial pain syndrome,carpal tunnel.i have had this for 10 yrs. from what i have read some people can have problems with their jaw(tmj) there is no definitive test for fibro unfortunately. at least none that i know of. dont give up hope because help could be right around the corner. take care,tinkieanne

Hi Redtail
I'm sorry you are sad and in pain. I have myasthenia and fibro too. I don't know yet how to deal with the pains in the days that they arrive. One thing you know is that we must to rest. And rest more. (I know how this can be terrible for our mental health! - feeling sad, alone and hopeless are some of my shadows these days) Don't give up seeking for help. If you want, PM me.
A Hug
Bluestone

Hi Bluestone, and Redtail,

I wanted to second what Bluestone said, about rest.

I used to try to push myself... but that was a bad idea because I'd get into much worse pain and be hardly able to move.

Now I just rest. I mean serious rest.

I've often noticed that I'm best in the morning when I first get up, then as the day wears on, especially if there's stress, I'm more and more bent over (I had tetanus.)

Recently I was looking at an old medical certificate my doctor filled out for the electric company, and she wrote that I have fibro. I don't remember her telling me that.

But there for awhile I wasn't remembering very well.

In any case, she gave me a prescription for a shot a day of b12 for a year... and when I began to use it, it helped . . . nearly miraculously. (I didn't use it sooner because I'd never heard of anyone taking that much, so I thought she'd made a mistake. I was too sick to go back... I've hardly been out of the house for years.)

Here's a link to a thread that has some really hope inspiring accounts in it:
http://neurotalk.psychcentral.com/sh...t=24816&page=3

and here's a link to a newspaper article from England that I find inspiring, and MAJOR hopeful:
http://www.health-boundaries-bite.co...MPRESSIVE.html

:)

I'm sorry also to hear that you're feeling badly. Don't worry if the doctor says you're depressed. No one can live with chronic pain and not be depressed, at least some of the time. It kind of goes with the territory. That can get better.
If your jaw pain is caused by TMJ, a jaw problem, it is one of the things that can co-exist with fibro. TMJ can be treated, I think.
I have three fused vertebrae in my neck an know how bad neck pain can effect you.
We do need to aim for at least an hour and a half of REST each day. Someone said to take on only 1/3 the amount of work you THINK you can do.
You'll find the right combination of rest and exercise for you. Low impact exercise can help, too.
Don't give up the ship yet.

Hi Coyote(love your name)
I guess I dont want the doc to say Im depressed, because Ive suffered from sevre depression before, and know Im not depressed at the moment, just a little unhappy and sad.
I have no trouble getting my daily rest, as I have myasthenia gravis, and have to have a rest most days. And excercise, well I want to start walking again, I live right out the front of a National Park(its only tiny) and the bushwalking is devine, especially when the wildflowers are in bloom.
thanks for listening and the advice, it helps to know there are people out there who understand.