[Gazelle]

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!

[Riverwild]

I'd hug you but it would hurt too!

I understand about the spasticity pain. There have been times where it literally felt like I'd been hit by a truck, the pain was so bad. When it finally lets go (usually all of a sudden it's gone!) there are no words for how good it feels. I've cried during the periods of spasming and after, when it stopped and I HATE to cry!

My spasticity finally slowed after I went on Tysabri. It's not gone, but I don't have the gutwrenching pain that I had before. It has been reduced by about 2/3 of what it used to be. There's no more days of limping, no more days of having my arm in a sling or my hand in a splint, no more nights of waking up screaming. There's no more popping baclofen like M&Ms. I'll get spasms now but I can walk them off or stretch them out and the tizanidine and baclofen keep them at bay more often than not these days.

I hope that you find relief. I don't have any suggestions, but I'm praying for ya!

[Kitty]

Hey Gazelle! You've been missed here. I was hoping you were just out having fun but it doesn't sound like it. I'm sorry you're having such a hard time of things.

Baclofen is the only thing I've ever taken for spasms and pain. I hope you can figure out the combo that works for you. It's exhausting to be in pain all the time. Not to mention it does nothing for your mood.

I'm sure someone will come along with some good advice for you. I was just happy to see a post from you!

[NurseNancy]

i'm sorry to hear that you're having so much pain.
i can relate to muscle pain too.

i hope your dr and possibly new meds may help...and soon.
please hang in there.

hugs, gentle ones

[SandyC]

Jim uses alternative methods to help relieve his spasms. Honestly, it's all that works well with the tizanidine and baclofen. I hope you get relief soon.

By the way, we live in the same place. heehee

[Gazelle]

Thanks, River. I hope that the co-pay for Ty isn't too high or I won't be able to afford to go on it. <sigh> I'm right at the beginning process, however, so it's going to take a bit to get everything approved, etc. All I can hope for is results like you have had if/when I do start it.

Kitty, wish I WAS having fun! You'd really have to be into S&M to call this fun, however.

Judy, I hope things work out too. Something's gotta give and soon. I just don't want to do 'roids again this year if I can help it.

If I think I know what you're talking about, Sandy, I can't use that method b/c it actually increases my symptoms. Talk about unfair! But if it works for Jim, more power to him and I'm glad it helps.

Have to say that I do LOVE, LOVE, LOVE my neuro at Johns Hopkins. He's awesome. It's especially refreshing after the first bonehead I saw there who told me I only had TM and never had MS.

Wouldn't you just know it that I got my baclofen rx refill (a 90 day supply, of course) mailed to me two days ago. And I wonder why my linen closet looks like a pharmacy.

Cripes, I'm going to go lie down. This really sucks.

[EddieF]

I took 60mg baclofen for my paraplegia 1989-2005.
Increased it to 80mg in 05. I figured I was just getting used to it.
Turned out to be M.S. and now take 120mg and still get them worse then in 05.
Added Soma's to pill list but it relaxed my intestines as well.
Trying Darvocet 100 to help spasms and lower back pain. Helps a little.
I hate getting woke up when my legs jump. Looks like I'll def fill out the Tysabri forms.

[Aarcyn]

wow. your pain came through loud and clear on your post. Sorry you feel so badly. I have nothing to add much A LOT of sympathy.

[braingonebad]

Oh dammmit. So sorry to hear this.

Wish there was something I could do or suggest, but I'm at a loss. Just hope you get the klonopin soon and the oxy holds you over at least a bit.

I feel rotten, that I did not get back in touch with you... life just gets out of control, ya know?

Trying to get back to FL before we are buried in snow. I felt 5x better than i have in the last few years while there and went right back to total carp when I got home.

Do you think this weather is doing the same to you?

[Gazelle]

Could be, Brain. I don't know.

No worries about the communication thing. I figured you had your hands full.

I was a bad girl last night and took another 4 mg of tizanidine. It helped and I was able to get to sleep.