Spasticity: Share your questions and experience here!

[Ihb7337]

howdy everyone. I was finally diagnosed with MS in fall 2011. I began sprouting brain lesions in spring of 2005 but, like many, my symptoms were vague ( other than lesions) so confirmation of my illness took some time.

Over the years, I have developed odd symptoms, one of which I would refer to as more like tremor, but can also be spastic at times. Mainly in my arms and hands, neck and sometimes in my legs. When it comes on, my ability to do any fine motor activity with my hands is pretty much zero. The more I try to control the movement, the worse it gets.

But I have had success treating the symptom!! And I am not on any MS meds yet ( supposed to start avonex this Friday ). My doctor prescribed baclofen for my jerking/ tremor issues and it works great! I only take it prn ( as needed) up to three times a day and have to wait about 6-8 hrs between doses. I am on a very conservative dose of 10 mg in each pill, but I tell you, I don't know what I would do without it.

Hope this is helpful to someone!?!

[LisaL77]

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

I am thinking not. I also think they all may be controlled substances and thus annoying to have to refill.

I just went off my clonazepam (with PCP in agreement) because between all the meds/shots, I am so tired. Of course, as soon as I woke up, my whole body clenched, lol. So, a core workout and stretching I did...we shall see how things go.

[GeoMoore]

Baclofen Question

Hello all,
I have just started taking Baclofen (last week) and am up to two pills a day. I have PP MS dx in 2007 and have been taking Rebif.

My question is how do I know the Baclofen is working. My right leg is always stiff and walking is difficult due to not bending at the knee. The Doctor prescribed for the muscles in the leg fighting.

Any help.
George

[futurmil2b]

I have been diagnosed with MS since 1994. I did not have spasticity for the first 8-9 years but have had increased muscle stiffness in my legs for the past several years. I have been treated mainly with baclofen and am up to 120mg/day. I do not have pain, but my muscles are very tight. It's like trying to bend a board. My neuro has mentioned using targeted botox shots to relieve some of my lower extremity stiffness. I have concerns about relaxing my leg muscles because I feel I do gain some strength from the stiffness (if that makes any sense). How much should I worry about relaxing those muscles that may cause leg weakness? Should I just leave well enough alone?

Mari - I have the same problem... MUSCLE TIGHTNESS. In my neck/shoulders/abdomen and my right leg is a bit stiff it's worst when sitting for long periods of time.. and I work..sit at a computer all day.

By the time I leave work, I can barely walk.. I am so TIGHT AND STIFF..its AWFUL. I come home and drink a half glass of wine... it does not help that much but a wee bit. I tried Baclofen did not care for that..had a bad experience with it.

One day I took 1/2 10mg in the morning and 1/2 at night - long story short.. I fell asleep and was trying to wake up but couldn't - I tried to call my daughter but I could not move, could not speak.. IT SCARED THE CRAP out of me.. somebody said it was sleep paralysis.

But I have experienced this before without the Baclofen but seems like with the Baclofen it was a bit worst.

Ms. Jay

[SnugglebunnyAC]

Dx 2011 - my spascisity

I was dx February 2011. Such a long year its been. I was prescribed Baclofen for my spascisity. I started on 10mg 3x's a day. That worked great for me.

I had a relapse in February of this year. Now I'm on 20mg Baclofen 3x's a day (which I think is still low) and I do daily physical therapy (when I'm listening to the PT) The physical therapist was able to point out to me WHICH muscles were spastic - and how to stretch them (3 sets a day -20 seconds per stretch - 3 stretches per set).

Here's what I think: the stretching helps. The baclofen helps and no side effects for me so far (except maybe constipation ... still trying to figure that one out). I still have SOME spasms in my legs (like before I have to pee - if my feet (which are super sensitive) touch anything but a flat floor - and sometimes sitting in a chair. The spasms are tolerable for me until we find the right Dosage. I had a bad reaction to Zanaflex 2mg (which they added when I was in the hospital) I felt EXHAUSTED and my liver function tests came back crazy high. So they took me off of it.

I have found if your leg starts "bouncing" (colonus) to move your foot forward and it should stop or apply more weight to your heel and that helps.

Right now I have spascisity in the back upper parts of both legs. Two days ago is the first pain I have felt (behind my right knee) and that might be Bc I slacked on my pills. I learned my lesson!

[WarriorSoul]

Has anyone tried acupunture? Thx.

[Sequoia]

Has anyone tried acupunture? Thx.

I've had lots of acupuncture, some of it for pain & spasticity. It did help, but the effect wore off too quickly and it was very expensive.

[mtngl]

Side effects of baclofen

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

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

Best wishes,

Mtngl

[alanpgh]

Clinical Trial & Spasticity Resources

You might be interested in this clinical trial. I think it is for a version of Baclofen with less side effects.
Here's a link to the Command Trial:
www.commandtrial.com/mw

You might also want to check out this section of the Resource Center:
http://resourcecenter.msworld.org/re...ut-spasticity/

Also, this one:
http://resourcecenter.msworld.org/re...ticity-and-ms/

Still consolidating some links in the new Resource Center, so the above will likely be combined in the future.

Hope this helps!

Alan

[Swimgirl]

Spasticity Home Remedies-Tonic Water, Mini Pedal Exerciser?

The last thing Mom wants to do is pop another pill or get another injection (Botox). Her GP recommended tonic water for the painful Charlie Horse spasms (calf muscles and toes) and it seems to do the trick...but drinkers beware, too much tonic water, as has been Mom's experience, and she then has to deal with diarrhea (usually more than 8oz). She has been getting okay results eating a banana around 8:00pm every night. I'm a big believer in PT...has anyone had any luck with purchasing one of those mini/small pedal exercisers. Amazon has one for under 40.00.

[Brenda Topping]

muscle tremors

My mom calls her leg spastics muscle tremors, her doctor had put her on all kinds of medicines like the baclfen and soma and flexerall. Most only work to an extent but times it gets to where she has to use a cane or wheel chair because of the pain. Alot of the medicine made her very sick and alot of time would forget to take what she needed to for her pain etc.

She has now resorted to a more "holistic" approach. It seems to help with the nausea and more of the spastic rocks in legs feeling. I had to open an online store so she could get what she needed for supplies to grow what she needed plus fresh veggies. Her greenhouse ended up getting robbed so now I got her set up with indoor gardening.

And she wanted to let you all know what I am working on so if you need any supplies I can help as well."hydroponicgardener(dot)net" I am a nurse of 12yrs and fully understand what MS can do to a person. Would like to help anyone I can.

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[Dayna]

I've had spasticity problems for 23 years and the symptoms have changed over the years due to lack of activity. It was all over muscular pain, but more so in my back and legs. In 1998, my calf muscles in both legs got extremely tense/hard, that I couldn't walk and had to crawl around the house on all fours if I needed to get up.

With a lot of massage from my husband (at the time), it went away after 3 weeks (the severity of it, anyway). They then became bruised to touch, and at times, they got hard and stiff again, but not as severe as that time in 1998.

In 2005, the spasticity started affecting my sex life, where my legs started shaking during and especially after intercourse. The shaking went on for up to 2 hours. Not only do they shake from all the activity that I'm not used to but they also do a bit of jerking when the shaking is trying to let up (after intercourse).

Over the years, I became so inactive due to the severe fatigue that I suffer from, and I spend most of my days in bed. Big mistake, because I now have muscle atrophy in both legs, so they're very weak and rubbery-like. At times they feel really cold because of the lack of muscle, so I have to wrap them with ace bandages for strength and warmth if I'm gonna be moving around. I haven't felt them become hard and stiff in a few years now, but they feel bruised to touch or massage.

I was told by several doctors that I'll never gain the muscle back, even with exercise. It's not like the average person who goes to the gym to work out to gain muscle. Once atrophy happens, and you remain inactive, you keep losing more and more of your muscles. If you become active again, it'll stay where it last was (as in muscle size), and you won't lose anymore, but you'll never gain back what you lost.

[futurmil2b]

Spasticity - Neck Shoulders

So glad to see this thread is still active. I think that is biggest issue. I have tried some of everything for my tight muscles.. baclofen..did not work for me..took it for a very short period of time.

Flexeril... will never take that again.. had me in a zombie state. Ativan does help just a LITTLE. Maybe if I upped my dose it will work better. I take 1/2 .5mg once a day sometimes 2x a day.

My poor neck/shoulders/abdomen/back on my right leg are awful. I also have a large tension knot in my right buttocks area.. I can feel it when I am sitting down.. My face area is so tight.. some of it could be from sinus issues I am having. Right side of my face and neck is AWFUL. I have large tight tension knots on the ride side of my neck. I wake up feeling so tight...especially my neck/shoulders..ITS AWFUL.

Some days, I can barely get around.. this is RIDICULOUS. I see my Neuro next week and I will see what he suggest. Sitting long hours is a no no and I do work F/T sitting at a desk - husband will not like it but I may have to quit and pray I get disability. There is no way I can continue working in the shape that I am in.

[ladibabe]

suprising

I have been just recently dx'd and the more I read the more I learn. I have had bad neck stiffness from time to time for several years. Well before ever being dx'd or my sensory isuues.

[Westgrl]

My main & first symptom was muscle spasms in my back which I guess could be spasticity. It seems to originate from the middle of my back & I have a lesion in my spinal cord right in that area. Some days I can barely do anything. Standing in the kitchen making dinner is horrible. The only thing that helps is to rest. Any attempt at exercise or sitting without my back supported ends in horrible muscle cramps in my back. My neuro at first did nothing, then he finally gave me Robaxin. I have also tried Flexeril. Neither helped.

The last thing I want is to be doped up on medication. I used the resources here to attempt to find a spasticity specialist but there's really only 1 in my area. She also seems to do acupuncture & Botox. She only has appt 3x a week & from reviews I have read, you can wait forever. I'm wondering if just going to a pain management specialist would help. There's a back surgeon near me who also has a pain specialist on staff. It's very frustrating, I can't really enjoy myself, even with the little things like shopping because too much walking causes horrible pain. Can't tell you the last time I was in the mall. Has anyone gone to a pain management specialist for this type of issue?