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Old 03-15-2010, 01:15 AM #12
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Judy2 Judy2 is offline
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Join Date: Sep 2006
Location: PA
Posts: 1,236
15 yr Member
Judy2 Judy2 is offline
Senior Member
Judy2's Avatar
 
Join Date: Sep 2006
Location: PA
Posts: 1,236
15 yr Member
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Hi Poochie! Yes, I live with constant pain 24/7 due to this miserable disease. I HATE IT!!! Today has been an especially bad "pain day" and then depression comes along with it. I was diagnosed in 1990, same year I was divorced, so have dealt with it totally alone. Didn't have pain for about five years, then started with a pain in the right buttocks -- a literal "pain in the butt"! Since then it's gone on to affect my entire body.

The doctors first thought I had developed fibromyalgia because of the all over pain, but now I'm not so sure because it's a nerve pain, burning, sharp, stabbing, and not in the muscle itself. I'm now considered secondary progressive and am in a chair since my legs don't listen to me anymore. Your neuro would have to diagnose what stage you're in and if it's progressed. I am able to stand up for a couple minutes at a time while hanging on for dear life -- balance is shot -- but I still live alone with help cleaning, etc.

I'm also on LDN after trying Beta, Avonex and Novantrone with horrible results. It, plus two Aleve daily seem to help the most and usually takes the edge off the pain. Tizanidine for spasms and sometimes Carbamazipine for pain also. Meds for bladder issues, depression, mitral valve prolapse and Atrial fibrillation round out my daily "cocktail". Oh yes, omeprizole too so I don't get ulcers from all of the above!

Guess we just deal with the hand we've been given and try to make the best of it, although sometimes it's sure difficult! Neuopathy in my feet along with lymphedema from immobility is painful too and makes wearing shoes or anything confining on my feet like socks, impossible. As "Friend" said, it does wear you down after awhile, but then a good day (relatively speaking) comes along -- the sun shines and things don't seem quite so bad.

Hang in there and if you ever want to PM me, feel free. Sometimes knowing someone else is dealing with the same things helps a little. Take care.
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.....Judy
SPMS -- FIBROMYALGIA -- Ouch! and Ouch!
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