Could I also have RLS

[Guest guest]

Hello to all my new friends:

I feel very much alone out here with this condition I'm not even

certain I have. But let me give you some background information.

Most everything should be included in my bio but since I want to

address certain things directly, please bear with me.

I have been ill for over 20 years with an unknown demylinating disease

which isDiagnosed as probable MS. But I have an underlying condition

which affects my life in a more profound way than the MS itself.

Paralysis in my legs is no doubt caused by the MS, but most sufferers

of MS do not deal with the magnitude of pain that I do, nor the

unbearable " snakes " in my arms and legs that drive me nearly crazy. I

am already on heavy doses of narcotics to help control the pain, but

even they are not sufficient.

Part of MS involves spasms in the extremities, and these are merely

annoying. But I deal with an intense " bone " deep pain and crawling

sensation that at times makes my skin feel as if it's on fire while at

the same time writhing with unknown " beasts " that feel like worms and

snakes are writhing and biting. It is so painful, that sometimes I

pound on my arms (which scares my husband), but it seems the only way

to get deep enough. What I see as different from everything I've read

on RLS is that while this condition is very bad before sleep, it is a

nightmareish horror I wake up with, so much worse than the night

before. This can happen after a " full " nights sleep (although I don't

know what a full night's sleep is), or from a one hour nap. The pain

can be under control before I go to sleep, but like something out of a

King novel when I wake up. I literally want to cut my limbs

off. So it almost seems my most prevalent problem happens after

sleep, not before. Most mornings I wake up in either a panic, a muted

scream, or moaning and writhing while I am still in the sleep state

(as witnessed by my husband). These are not common symptoms

associated to MS.

I am never pain-free, in fact deal with severe pain every day in spite

of the narcotics. I can't imagine what I would do without any

medication. There have been times over the course of my illness that

I have been suicidal, however no matter how bad it gets now, that is

an option I will never consider again. When I read some of the

symptoms of RLS, I thought this might be what I'm experiencing. I

appreciate any input on this, and hope I possibly have at least found

a group of people who experience what I do. (I should note I do not

drink coffee or anything else with caffeine, alcohol, or anything else

that may exacerbate my condition.)

Thank you for listening, and I look forward to hearing from any or all

of you.

Most Sincerely, Joanne

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God, grant me the serenity to accept the things I cannot change; courage to

change the things I can; and the wisdom to know the difference