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]

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]

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]

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.

[url]http://www.umassmed.edu/cfm/stress/index.aspx[/url]

[Punni]

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!

Originally Posted by 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!!

[MedGirl70]

Originally Posted by mtngl

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.

[mtngl]

Hi Mariposa49,

It can be difficult to tell which medication is causing weird side effects. For me, it seems likely that the Baclofen is causing me to feel nauseated and dizzy. However, I cannot be sure about this. I recently started taking Tramadol and I hope that I can tolerate it. I tend to be sensitive to some meds. Hope that you find some comfort..and peace of mind.

Regards,

Mtngl

[audima]

Spasticity along with walking issues were my first symptoms - was treated for numerous other things before before being referred to a neuro and quick dx of MS - 2004. Taking baclofen and it does help during the day. I was having those "charlie horse" cramps at night and have started taking Potassium, Magnesium and Vit E along with the baclofen each night before bed and it has reduced the cramps for me. They seem to run across the bottom of my foot and up my leg - turning my foot to a very unnatural position and yes, they are very painful. Glad to hear so many are getting help with the "pump" Nice they are getting the relief.

[asiel1]

I get it in my legs, hips and arms and shoulders/top of back. The arm shoulder thing is the most common, sometimes it's a daily companion. The hip pain is the most intense. I've learned to live with the arm thing, but it makes my arms and hands weak so using my left arm is tough.

I take baclofen, but it makes me a bit doped up. I find hot showers help for about an hour or so, but flare up the fatigue. So I turn the air down, jump in the shower, and then nearly crawl to my bed where I lay til the cool air takes away the fatigue.

I have found with this disease, sometimes you have to laugh to keep from crying.

[wallflower]

dh has had ms for 3.5 years. in june he began to have spasms. in 1 day, he fell down flight of steps twice and then had the most severe muscle spasm thru his entire body that evening. his body was stuck in spasm for prob 20 min. he just screamed. body was twisted and stuck. thankfully kids were not home. went to ER and got flexerill. spasms continued but not as severe. now he takes 10mg baclofen 3x/ day + keppra. the keppra is working great. he starts to get the twitches if hes an hour or two late on his med time.

anyway, he had severe back/ leg pain after that. herniated disc severely and needed surgery.

[Shiela]

I'm on 20mg Baclofen 4 times a day for spasticity and don't have nausea or vertigo. (I did have sx of vertigo before using Bac though). I think it's different for everyone. Doc thinks my MS is RRMS.

I have spasticity in my legs that feels like the muscles get hard and it hurts to rest them on anything. It has caused walking problems for me to the point of cane and wheelchair, but the Baclofen helps most of the time unless I've been really active.

The cold does seem to make a difference. As soon as it starts getting colder, I start having charlie horses in my feet and legs, especially at night. I feel for anyone with these issues. It can be very painful.

[Kittylips1]

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.

Have you used any of the cd's off the internet?

[mtngl]

The only other symptom I get from taking Baclofen is fatigue.

It seems, though, that the nausea has subsided recently.

Best wishes,

Mtngl