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!

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!

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. :rolleyes:

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

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 :hug:

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. :hug:

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

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. :rolleyes:

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

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.

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.:hug:

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?

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.

I forgot to mention Jim takes 24 mgs of tiz a day. 8mg's 3x a day. Maybe the higher dose would be best for you? Maybe your doc will up it?

I take a combo of Klonipin and Baclofen. It has helped but I have days that are still really bad, too. Spasticity has been my nightmare sx for quite a long time. It even affected my walking quite profoundly. You saw me walk before they got the Baclofen up to a good level and you've seen me since so you could definitely see the before and after.

I still have problems sitting, standing, walking for extended periods. I wake up a lot at night unless I take enough Baclofen and Klonipin. It still sucks, but it is better than before.

One thing that really helps me is getting a really good hour long Swedish massage. It hurts at first, but everything released and I could cut back on drugs for awhile. That reminds me, I need a massage again soon!

I do hope things turn around for you soon. I hope you can get the Tysabri and get past all of this crap!!!

I'm so sorry to hear about the level of pain you're in...and the lack of relief. I hope that you can get some kind of relief soon, because you sound over the edge with this disease...
makes me empathize more with those MS patients who used Dr. Kevorkian...I never understood why an MS patient would want his services until I experienced the sxs from it...now I get it.

Keep letting your doc know what's going on...and that you need relief now...:hug::hug:

((((((((Gazzy)))))))) Feel better soon..:(

Sandy, maybe a higher dose would help. I took another 4 mg extra again last night and it helped. Maybe I can mention it to my doc and see what he says.

Holly, you're right. I did see the before/after walk with you. It did make a difference when they finally got the med combo figured out. And I know how frustrating it still is for you. Thx for listening to me when I've whined to you. :hug:

Tried calling my regular doc yesterday early to see if there wasn't a pain med that I could get that might last longer than the oxycodone. They didn't have any klonipin samples--I asked. Never got a call back and I even checked to see if the dr had responded to the note right before the office closed. :(

Deb, I get Kevorkian too. That's what scares me.

Thx, Sally. I hope so.

I really doubt any doc would have samples of klonipin because it is such an old drug and has been generic for years. The pharmas wouldn't have any incentive to give out samples.

Can I ask a stupid question? Can you always tell if the pain is spasticity? I can tell when it's my back/neck, but I'm never sure with my legs. They just don't hurt the same way. The back gets so locked up it feels like one solid bone lol.
The legs don't get like that, stiff a little,but not anywhere near like the spine.

When I had nerve pain it was pretty consistent and wouldn't go away. It stayed in one spot, so it was predictable. But I'm getting muscle spasms and the pain's accompanying them. It goes away if I don't have the spasms and it's just like a normal muscle spasm--starts out where you know you're getting one and builds in a wave. That's when the pain really starts. It's also a bone-deep pain sometimes where it feels like the muscles want to rip away from the bone.

I had been on neurontin before but it didn't help and by then I was up to almost 900 mg a day. The max I've ever been on neurontin was 2400 mg a day. That was back in 2003. My neuro and I discontinued the neurontin as it wasn't helping with any of my symptoms--not decreasing anything at all even slightly. The neuro definitely feels that the pain's related to spasticity rather than nerve pain.

So I didn't really answer your question. My guess would be that no, you really can't always tell if it's nerve or spasticity pain. I suppose you have to rule out one or the other by trying different drugs.

Other than that, Mrs. Lincoln, how was the play?

(Love your tag line, Brain!)

Gaz, we don't have enough experience yet but Jim's been getting Botox in his legs for spasms. He's had one treatment so far but it did help and lasted about two months. He's due for his second treatment on the 27th and I can update how he feels afterward. His legs spaz so bad they draw up and cross over. After Botox they stopped doing that completely.

With my back, it feels like slowly tightening tightening tightening until nothing wants to move. It stays like that sometimes days, sometimes longer. Sometimes even pulls the ribcage tight so it sort of constricts my breathing.

But it's slow slow slow, not like clench let go, just getting more tight like tuning a thousand piano strings at once, all over my back.

With the legs, not like that, more like RLS then it aches. Not nerve pain that I can figure. But I don't know what else to call it. My legs get a little stiff but the back , you can see it's locked up.

My neck is so bad, we always use that old Steve Martin line - " When I walk into a restaurant, every head turns except mine cuz I have no neck!"

Sandy, I've heard botox works wonders. My friend, Darah, is thinking about getting that done for her spasticity because it's pretty bad. Mine isn't as bad as Jim's is, but man, I feel for him! Hope he gets as good results from the 2d tx as he did from the 1st tx. My legs have been bad enough that the only semi-comfortable sleeping position is the fetal position.

Brain, my back will tighten up like yours does. Part of the problem is that my upper back/trap/neck area are prone to spasms because of having had whiplash a few times. Love the "heads turn" line. I'll have to remember that!

I hear you with the rib constriction. I've been having to take off my bra because it HURTS my ribs and my back. But it's not an all-around feeling--it's between the ribs and in certain back muscles.

Yeah, I know about the RLS thing. Interesting way to describe that. It's not the RLS, that I know. I'm taking ropinirole (generic Requip) for that and it helps. Got to ask the neuro about the klonipin with the ropinirole as both help with RLS. Yet another thing on my to-do list.

I've had a headache now for 2 days from this. Around my head, not in the head. <sigh> Only one more day to wait until the doc's office opens up. I'll be on the phone first thing.

Think I'll go kill some pain with Ghiardelli chocolate brownies. It won't make the pain go away, but it will certainly make my mind go elsewhere. Too bad my football team has a bye week this week.