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Old 08-07-2005, 07:26 PM   #1
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insight needed (also a bit of a vent)

I've read the sticky about general information on fibromyalgia (the first post at least...the ones after are a little too indepth for my concentration right now).

Please tell me if any of you have experienced something similar/know if this is possibly related to the syndrome.
First of all, cold flowing sensations, particularly in my head. Feels like it is actually in my brain and that it is a 'nerve' that is causing a release of coldness. Sometimes it's in my inner thighs also.

Extreme nerve discomfort/hypersensitivity. Now very few web sites have mentioned nerve discomfort, which makes me think perhaps it's not F. Actually, I only came across one that has. Which leads me to explain that just this past Fri. I was at a neurologist. He found nothing wrong. About 2 months ago I also got an emg because I thought I had carpal tunnel -- the test showed nothing. So pehaps it only feels like nerves, but it is not? Now since neither doctor found anything, and F. can only be diagnosed through the stimulation of pressure points, perhaps I'm headed in the right direction? Although I should likely get a second opinion. *confused*

I have also read that this is not a progressive illness. Now is this wrong? If it is not, then I do not have it because just about everyday it's something different -- is that normal? Or does progressive mean it will not cause damage to the body? If it is progressive concerning pain and discomfort, is there ever an instance where it doesn't turn into agonizing pain? Or is the outcome usually unfavorable? Has anyone been shown to have F. without much progression?

Now to the venting part:
Sometimes it feels like a person is chiselling away at my bones. Mainly my ankles, and now my sternum. The beds of my fingernails even hurt, and the skin between each finger. I cannot stand still without shoes on if it's on a hard surface -- nearly unbearable. It makes standing up in the shower quite the feat, or I simply do not stand at all. So I have to put a towel underneath myself because sitting down on a hard surface is also terrible.

Noise has bothered me for over a week now, but last night was the defining moment. There was a fly buzzing around, and if it would get too close, the sound was practically torturous. I thought I was going insane. I mean a fly? Come on.

It has also 'spread' to my face. Tingling lips, and putting on eye makeup has gotten to be semi-uncomfortable.


So I plan on making an appointment with a rheumatologist this week. Good idea? Any other doctors I should consider going to?

 
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Old 08-08-2005, 10:13 AM   #2
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Re: insight needed (also a bit of a vent)

Welcome Jonquill!

The things you describe have all been experienced and discussed on this board by others. Fibro is supposedly not progressive, but it does change and manifest itself in different ways. The nerve pain and the very tender skin is one I have all the time along with muscle pain and burning pain. You are on the right path seeing a rhuematologist. I'm sure others on the board will have some great ideas for you.

Fibro is a strange illness and we all deal with it in different ways, but you came to the right spot, glad to have you join us. Come here and vent anytime you like we are always here for you.

The tender feet, I have that also. I never go barefoot and when in the shower I wear a pair of shower shoes. They are actually just those black slip on that you buy at discount stores (usually can get them in early spring). They are made of plastic or rubber and have a thick enough soul to give you arch support and a small heel. My podiatrist actually told me to wear them after I had surgery for plantar faciitis. Which is something that can happen a lot to people with fibro. It feels odd at first to be in the shower with some sort of shoe on but you get use to it in no time and it really helps. I just dry them off and leave them outside the shower for the next time, it's great for the feet.

Glojer

Last edited by Glojer; 08-08-2005 at 10:21 AM.

 
Old 08-08-2005, 06:02 PM   #3
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Re: insight needed (also a bit of a vent)

Thanks for the warm welcome. Shower shoes... never thought of those. Your suggestion is appreciated.

 
Old 08-09-2005, 09:19 AM   #4
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Re: insight needed (also a bit of a vent)

Anytime I can help, I'm glad too! Keep posting and let us know how you are doing.

 
Old 08-11-2005, 05:20 PM   #5
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Lightbulb Re: insight needed (also a bit of a vent)

Don't pass over this tingling and being unable to be still. This could be restless leg. Many people have it. Many are Fibro people. I fought this devil for years, night and day with night being the worst. FINALLY I found a DR that prescribed Mirapex. OH MY GOSH - wonder drug. I can withstand the pain of Fibro better than the restless legs. IT is just horrible. That is the only drug that ever worked and I call it the Miracle drug. I will never, never stop taking it. Having said that, I now have pain in my legs that is a burning, heavy feeling pain. It started in feet and ankles, and is now on front of upper thighs. My Dr., dumb as he is, said it is not connected to Fibro.
What in the heck is it. I had enough pain before this started.

 
Old 08-16-2005, 06:37 PM   #6
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Re: insight needed (also a bit of a vent)

heh.. Dumb doctors. I've had my fair share of those. I'll look into restless leg and keep that medicine in mind. Thanks.

 
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