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Old 10-15-2009, 03:00 PM #1
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Gazelle Gazelle is offline
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Join Date: Jan 2008
Location: somewhere over the rainbow
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15 yr Member
Gazelle Gazelle is offline
Senior Member
Gazelle's Avatar
 
Join Date: Jan 2008
Location: somewhere over the rainbow
Posts: 1,362
15 yr Member
Default Major pain from spasticity...Aaargh....I could scream...

I have been fighting the flare from hell since the end of July and am about ready to finish pulling all my hair out! It started with me noticing spasming after I was done with the neuro's check for spasticity. You know... when they jerk your legs around to see if there's spasticity. Well, talk about pain and cramping after the testing was done! Ouch!!

It led into major pain in my feet, calves, thighs, butt, and lower back. Then it moved into both my hands, especially my left one. I'd sleep and wake up with my left hand crabbed up and when I'd try to open my hand, WOW!, the pain was horrendous and would take my breath away.

My neuro prescribed tizanidine for me at 2 mg three times a day but that didn't really touch it for very long. That was in addition to bumping up my baclofen to 80 mg (from 40 mg). So we moved the tizanidine up to 4 mg 3x a day, which helped for a bit. Now, I'm having breakthrough spasms all over and they're creeping back into my arms and legs and they've started in my upper back and around my skull.

I've about had it. The pain is exhausting. My concentration's shot. My energy level is horrible--I have none. And I finally have an rx for oxycodone for the pain, which helps for a little while--maybe 3-4 hours--and then does nothing.

My neuro just prescribed klonopin for me but I have to wait for the mail order pharmacy to get it to me (to avoid 2 co-pays). So I'm relying on the oxycodone to get me through until it gets here. We're discontinuing my baclofen entirely as both the neuro and I don't think that it's doing anything. So titrate down I go.

I'm so stiff and sore and my balance is off and I'm sick to death of being exhausted. It's gotten to the point where I've been taking 3 hour naps during the day on occasion. My eyes just go crossed and I have to sleep. My poor border collie is going nuts because I'm having trouble playing with her as well as doing just about anything else, like cook, clean, go up and down steps.

Man... one major whine!!

I've tried heat and ice which both help but the pain comes back right after I remove the heat or ice. Stretching doesn't help as I tend to spasm right back up or have increased spasming from attempting to stretch.

On an average day my pain level hovers around a 5-6 or 6-7 with peaks into 8 range (on a scale of 1-10). On a good day it is around a 3-4, which I can tolerate.

Unfortunately, I can't get a grasp on this pain. I lived with chronic pain in my left shoulder for 7 years following a car accident and shoulder surgery, but this is totally different. It's not confined to one area. It radiates up and down my body and ebbs and peaks at different pain levels. So it's hard to get used to because I don't always have the pain in the same place or at the same intensity.

My neuro also wants me to go on Tysabri, which I'm very open to at this time. I've been in a clinical trial for oral fingolimod (FTY720) since February and have had 3 exacerbations in 6 months, which isn't more than I had when I was on copaxone. It's just that the intensity has changed. The flares are WORSE! I had 4 days of vertigo during one flare in early July and ended up on 'roids in May for the other flare. Oh I wouldn't wish vertigo on my worst enemy.

I'm really hating this disease right now--more than I have ever hated this disease before.

Please, someone take me out back and shoot me. Put me in the compost pile or something later so that at least I'm good for something! I need a respite!
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