Spasticity: Share your questions and experience here!

[maitrimama]

What is the difference between spasticity, spasms, cramps (charlie horses) and restless leg syndrome?

There are so many descriptions and definitions out there that both overlap and contradict each other that it gets confusing.

[Scooter24]

I was on baclofen for 1 1/2 yrs for the leg cramps, I missed a couple of doses, my balance has greatly improved and had not had any increase in cramping so I have stopped taking it all together, I was only on 10mg once a day. My infusion nurse said she has heard the same thing from others and most have been on ampyra also.

[futurmil2b]

I am a bit confused. Not sure if I have muscle spams, spasticity or what. When I sit for a long time..which I do at work.. oh boy my right leg acts up. I do not get charlie horses or anything.. but it feels a bit heavy and stiff.. but I can still walk.

My neck/shoulders are the WORST... They feel so tight and stiff - I also have tension knots in my neck/shoulders and I am sure in my back. I am wondering if Zanaflex will help. I gave Baclofen a try but not a fair try. I will take a small dose 1/2 of 10 mg 2x a day - I took it for a day here and there.. but nothing consistant.

But I think I am going to give the Zanaflex a try. I just hope it don't make me feel all loopy. Doc prescribed 2mg but I don't weight but so much (another issue I am dealing with.. I so want to gain weight) therefore, I may start out with trying 1/2 1mg and see how I do on that..

I pray I get some relief with that.. my poor body some days feels like I am 90 and I am only 51 years young. The mornings are the WORST.. I wake up with tight neck/shoulders and my chest feels just a little tight..not too bad though.. a shower helps just a weeeee bit.

I also have sinus problems.. which cause head pressure/face tightness.. oh what fun. I just want some QOL back. I get so I don't want to do much of anything. I do work full time which is VERY CHALLENGING. By the time I get off work.. SO TIGHT.. I come home and have less than a 1/2 glass of red wine.. it helps just a wee bit.

I also take a small dose ativan which some days it does nothing.... The pharmacis said I can take the Ativan while taking Zanaflex.. but I will space them out.

I may try the Zanaflex this weekend.. YIKES... So nervous to try it.. but I will give it a shot..only half though :0)

Jay

[dolphinman]

I've been Dx'd with MS for 23 years. The last 10 years more spasticity or "leg cramps" issues more often, but only at night/early morning. My MS only has affected my legs. At times when I've been sitting/lying during the day(s) in one spot and begin to get up I have a tightening or spastic episode in my legs while standing up. I've been on Baclofen and Zanaflex at first, but not for long so I can't really remember why other than they didn't solve the issue. Tizanidine did better until about 2-4am then I was told it only lasts in your system for 4 hours and if you take Valium (diazepam) in low dosage (5mg) and monitor closely, it's in your system for 8 hours! I now can sleep through the night a LOT better. Always check with your Primary Physician what's best for you!

[alanpgh]

Have any of you checked out the Clinical Trial for a drug that is similar to Baclofen at the top of the message boards?
Looks interesting.
Or, you can go directly to:
http://https://www.commandtrial.com

Just put in your zip code to see if there is a testing center near where you live.

Please let us know if this works for any of you.

Good Luck!

Alan

[consue65]

I have severe spasms in my left quad. My neuro prescribed a generic form of Mirapex. Sometimes it works but other times it takes 3 pills to back it off and then my leg really hurts. Have any of you found something that works better?

[applejack1975]

I began to get my first taste of spasticity 5 nights ago. It was so bad two of those nights, I honestly thought that I had fractured my hip. Twice I had to scoot back to bed on my behind.

I can stand 30 seconds, tops, before the muscle fasciculations began, and then it feels like someone stabs me in the left hip. Then there is the pain and immediate numbness that trails down my hip to my knee.

Does this sound familiar to anyone? I'm supposed to start home health IV steroids tomorrow, as Doc (who is as illusive as Casper) has decided that this is an MS exacerbation.

She's bright, and it didn't take her long to figure this out; but I question the reliability and accuracy of one of the medical assistants working under her. I'm on the verge of looking for another neurologist.

[rdmc]

Originally Posted by applejack1975

I began to get my first taste of spasticity 5 nights ago. It was so bad two of those nights, I honestly thought that I had fractured my hip. Twice I had to scoot back to bed on my behind.

I can stand 30 seconds, tops, before the muscle fasciculations began, and then it feels like someone stabs me in the left hip. Then there is the pain and immediate numbness that trails down my hip to my knee.

Does this sound familiar to anyone? I'm supposed to start home health IV steroids tomorrow, as Doc (who is as illusive as Casper) has decided that this is an MS exacerbation.

She's bright, and it didn't take her long to figure this out; but I question the reliability and accuracy of one of the medical assistants working under her. I'm on the verge of looking for another neurologist.

Let me just start by saying I'm no doctor, and as the saying goes, "I don't even play one on TV."

But I've had lots of experience with spasticity, leg and hip, in particular. About a year ago I had to have a pump implanted to deal with it, and it's been quite under control since then.

Now as to the hip sharp pain that shoots, and is followed by numbness...I would question if that's spasticity. Sounds more like a nerve pain to me. Spasticity, in my experience causes pain, but it's a burning, aching, long lasting stiff pain...not a shooting pain, or necessarily a sharp pain...at least that's my experience.

If it doesn't improve, i think I'd ask for x-rays of the area...just to make sure you haven't pinched a nerve.

However, if the doc is convinced it's spasticity, then they should try you on an anti-spasticity med.

Hope you get some relief.

[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?

[there]

Sometimes it is difficult to distinguish between restless leg syndrome and MS leg muscle spasms/cramps. An easy way is find out which is to use drugs. If Baclofen works it is probably MS spasms if not it could be restless leg syndrome (the best drugs being Horizant, Mirapex if severe).

Magnesium has no impact on either if one is not deficient and has no impact on restless leg syndrome. A ferritin level below 50 generally makes restless leg syndrome worse and so does benedryl and antidepressants. However, it seems that both can improve if through diet or supplements nutritional deficiencies are rectified.

Restless leg syndrome tends to work like this, spasms tend to start at night after lying down for a while and getting up and walking tends to make the spasms go away.

My most bothersome spasms turned out to be restless leg syndrome.

[MarkLavelle]

Originally Posted by Kittylips1

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

The guided recording of the body scan he mentioned is on the 'Series 1' CDs sold at http://www.mindfulnesstapes.com/

It goes with Jon Kabat-Zinn's "Full Catastrophe Living" book (http://www.amazon.com/Full-Catastrop...6316407&sr=8-1).

Short of taking a mindfulness meditation class, this book & CD is a good way to get started. I got exposed to both when I had cancer (1996) and found them very useful.

[Kittylips1]

Thank you so much for the info!

[woodstock]

I've been reading the descriptions of spasticity and I'm wondering now if that's what I have. I had something similar last year a few months before the numbness MS event that got me diagnosed. Then, it was thought to be iliotibial band syndrome with some piroformis involvement. I went for physical therapy and not only did it resolve quickly, but I ended up with more range of motion in my lower back than I'd had in years.

About three weeks ago, I started having pains again along my left side (same as before) from my piroformis (which is near your sciatic nerve in your buttocks) down the IT (iliotibial) band which goes from the buttocks and down the outside of your leg and wraps around your knee. It is usually not very noticeable in the mornings. As the day wears on and depending on how much I sit or walk at work, by mid-afternoon my leg aches and the pain starts creaping down my toward my foot. Doing a quick stretching exercise or yoga pose will keep the pain at bay for a while, but it still comes back. This time, PT doesn't seem to be as effective which is why I'm wondering if this is MS or IT band. How do you tell?

[butterscotch100]

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

I would make an appt to see a physical therapist about spasticity and weakness. PT Helped alot. They can even fit u for a can too

Are there any meds for spasticity that don't have drowsiness as a side effect?