Spasticity: Share your questions and experience here!

[alanpgh]

There has been overwhelming interest in Spasticity.

Please share your questions and experience on Spasticity here.

We will also forward much of this information to Spasticity Experts prior to upcoming webcasts, such as Release Your Potential and others!

Your comments and questions will help everyone!

[timeuponaonce]

How would I find out I have spasticity?

I really don't know what spasticity is.

What are the "symptoms" and how would I know I have spasticity?

Are there such people as Spasticity Specialists to help in diagnosis and treatment?

Any answers are appreciated!

[nappy]

Spasticity

I had spasticity as one of my first symptoms.

Initially doctors misinterpretted it as back problems and sciatica. I was in PT for a suspected disc issue when I really herniated my disc.

This was because I could not feel how to do the exercises correctly or the pain from a bulging disc.


While in PT again after disc surgery- MS was finally suspected and tested.

But my spasticity continued.

I would get outrageous spasms in my back and legs all the way to my feet. My husband would try to rub them out but even when the initial spasm would subside, my muscles were always very firm.

I began deep tissue massage therapy but was still unable to completely relax the muscles.

I was prescribed Baclofen, Keppra, Zanaflex, and also did Botox for a year and a half.

I now have had a baclofen pump for two years and have had the greatest results with it. All the other medications were too sedating in the dosages that I needed to get relief.

Currently I am in pt for spasticity involving my arms, shoulders and neck. So here we go again!

[mtngl]

Spasticity and medication side effects

Hello,

I've been dealing with spasticity in my legs for about a year now. Prior to this it was only every once in awhile, but now it is daily. I take Baclofen for it and it does help somewhat.

However, I noticed a lot of nausea and vomiting as I increased the dosage. When I only took 1/2 pill 3x daily, it wasn't as noticeable. Now that I take it as fully prescribed (1 pill 3x day), the stomach issues have become worse.

It may sound silly to complain about just the nausea thing, but it is annoying on top of everything else.

Have any of you had good results with other approaches to dealing with spasticity?

Also, my left leg is noticeably weaker than my right. I know that some sort of device (cane?) might be in my immediate future. How do you determine what to do?

Thanks,

Mtngl

[Sissy]

I take Zanaflex 1mg q 4 to 6hrs. My hubby also puts the heating pad on my whole back or shoulders which ever is the worse. I find this treatment helps the most. I can't stand the deep tissue massage as it hurts to apply pressure. Sometimes just sitting in this office chair with the edge of the seat pressing on the back of my legs makes the pain worse!

My spasticity feels like my muscles are tight and won't relax or like a rubberband that is pulling tight and you can't stretch it out. But hurts like "Charlie Horse" as my mom would say. It is VERY painful.

I'm not positive, but I think the spasticity is what causes my feet to draw draw up when I try to point my toes (?) like trying to put on certain shoes or I can just be standing and my toes try to draw up or down. Again it is VERY, VERY painful!!

[Sequoia]

I manage my moderate spasticity with a form of therapeutic meditation called Body Scan. It's part of the MBSR (Mindfulness Based Stress Reduction) program pioneered by Jon Kabat-Zinn at the University of Massachusetts Medical Center.

http://www.umassmed.edu/cfm/stress/index.aspx

[salamandertom]

I experience spasticity in a lot of areas. In my neck, back, shoulders, arms and legs. My legs are bad only really at night and they can really hurt. My arms hurt a lot all the time, they get really tight and sometimes my hands get really bad too. Before the neuro recently upped my dose I was getting to the point where I didn't feel like my arms would always work.

My back muscles used to feel like they were getting stuck all the time before, but on this new dose they just freak out now. Twitch I guess. I sometimes have a hard time telling the difference between nerve pain and spasticity pain b/c I have both.

[BobOP]

I have been dealing with Spasticity since I was diagnosed with MS in 1994. Initially, I was using oral Baclofen & reached a daily dose of 120 mgs. a day. In 1999, I had right foot surgery which caused my spasticity to really flare up.

I would have spasms in my right leg where my knee would come up to my chest. Valium,Klonipin & Xanaflex were added to the oral Baclofen with little relief.

Later on in 1999, I got my first Baclofen pump. The Baclofen pump is implanted on my right side along with a catheter in my spinal column. I noticed that my spasticity was lessened the first day I had the pump. Once we got the dose leveled out, things have gone well.

I am currently on my 3rd Baclofen pump. The pump's have to be replaced due to the battery running low. There is a website called Spasticity.com It has a lot of good info about the Baclofen pump.

Take care, Bob

[Punni]

Spasticity

Good morning to you, I was diagnosed with MS in 1997 and just within the last month I have had severe pain in my right leg and back area. My symtoms sound very similar to yours, especially since I went to my neurologist. She immiedately ordered an xray and mri to rule out sciatica or cyst on my spine. She gave me another script for more drugs! This time, soma and a stronger valium, all of which just knock me out and I sleep, soon as the drug wears off, Im back awake in pain. My wonderful husband massages me, but the benefit is very minor. When the inital spasam happens, it grasps you like a vice and I can't even move. It is like a strong rubber band that is pulling the whole right side of my body.I am so sorry this is now happening in your neck, shoulders and arms, how painful

I had spasticity as one of my first symptoms.

Initially doctors misinterpretted it as back problems and sciatica. I was in PT for a suspected disc issue when I really herniated my disc.

This was because I could not feel how to do the exercises correctly or the pain from a bulging disc.


While in PT again after disc surgery- MS was finally suspected and tested.

But my spasticity continued.

I would get outrageous spasms in my back and legs all the way to my feet. My husband would try to rub them out but even when the initial spasm would subside, my muscles were always very firm.

I began deep tissue massage therapy but was still unable to completely relax the muscles.

I was prescribed Baclofen, Keppra, Zanaflex, and also did Botox for a year and a half.

I now have had a baclofen pump for two years and have had the greatest results with it. All the other medications were too sedating in the dosages that I needed to get relief.

Currently I am in pt for spasticity involving my arms, shoulders and neck. So here we go again!

[Punni]

Spasticity

Hi Sissy, my smptoms sounds so similar to your! This pain is new for me, I was diagnosed in 1997 and the last month have had 3 seperate events that a muscle crap hit me like a vice, in my right leg, back all the way to my foot. I couldn't walk for at least 15 minutes. I notice also, like you that sitting in a chair the edge of the seat makes the pain worse. Last Saturday I had an mri and xray to rule out sciatica, so let's see. Does the Zanaflex work for you? "Charlie horse" is exactly what it feels like! Enough to bring tears to my eyes!

I take Zanaflex 1mg q 4 to 6hrs. My hubby also puts the heating pad on my whole back or shoulders which ever is the worse. I find this treatment helps the most. I can't stand the deep tissue massage as it hurts to apply pressure. Sometimes just sitting in this office chair with the edge of the seat pressing on the back of my legs makes the pain worse!

My spasticity feels like my muscles are tight and won't relax or like a rubberband that is pulling tight and you can't stretch it out. But hurts like "Charlie Horse" as my mom would say. It is VERY painful.

I'm not positive, but I think the spasticity is what causes my feet to draw draw up when I try to point my toes (?) like trying to put on certain shoes or I can just be standing and my toes try to draw up or down. Again it is VERY, VERY painful!!

[Sissy]

Hi Punni
It help pretty good,sometimes. But a heating pad or rice bag help's it work better, I think. I have had it in my neck and legs today. Yes it can bring on the tears. I have had it a few times where I swear the bone was going to snap in my lower leg. THAT brings on the waterworks really bad.

POW-WOW ANYONE?

[Seasha]

I also have spasticity - mostly in my legs. I don't like taking drugs, so I'm wondering if there are some alternatives to helping with this? Also are there some kind of exercises that help - I do yoga and stretching, but sometimes even that doesn't help. Thanks!

[Seasha]

I also have spasticity - mostly in my legs. I don't like taking drugs, so I'm wondering if there are some alternatives to helping with this? Also are there some kind of exercises that help - I do yoga and stretching, but sometimes even that doesn't help. Thanks!

I forgot to mention that the spasticity is worse in cold weather. What's up with that? Thankfully, it's summer now and not as bad.

[mtngl]

weather

Glad that you get some relief with the warmer weather. I have not noticed a difference with mine. Some of my other symptoms flare when I get too hot.

[MedGirl70]

Baclofen

Hello,

I've been dealing with spasticity in my legs for about a year now. Prior to this it was only every once in awhile, but now it is daily. I take Baclofen for it and it does help somewhat.

However, I noticed a lot of nausea and vomiting as I increased the dosage. When I only took 1/2 pill 3x daily, it wasn't as noticeable. Now that I take it as fully prescribed (1 pill 3x day), the stomach issues have become worse.

It may sound silly to complain about just the nausea thing, but it is annoying on top of everything else.

Have any of you had good results with other approaches to dealing with spasticity?

Also, my left leg is noticeably weaker than my right. I know that some sort of device (cane?) might be in my immediate future. How do you determine what to do?

Thanks,

Mtngl

Hello Mtngl, I am on Baclofen 20mg 4 times a day and I am also having some issues with nausea and I'm alos on Zanaflex,Keppra,Primidone and a list of others, Just wanted to know if you also have Vertigo issues with the Baclofen use also or is it just the nausea and vomiting? I was on it years ago but it didn't make me nauseated like it has this time, thanks for any info you or others can provide.