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Thread: Spasticity--How do you experience it?

  1. #1

    Spasticity--How do you experience it?

    Hi, I really need to know how others experience spasms...where...how...what meds in what amounts...what triggers it? Mine is getting really bad and it scares me. Thanks for any help. Snuz
    Last edited by Snuz; 08-08-2009 at 05:57 PM. Reason: Sorry, print is too big,
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  2. #2
    Mine used to trigger winner rub the top of my legs or certain parts of my body but as time went on it does less and less to make them trigger, causing my legs to kcal when I would just go to push myself around or for my back to straighten my body out and I would slide down in my chair. It was really bad so I ended up getting a baclofen pump to bring spasms down. Since then I've had to have it turned up almost to the maximum amount. If it wasn't for this baclofen pump, I wouldn't be able to sit in my chair without being firmly strapped in and I could forget about being in Emmanuel. I had to have it removed for a month a few years ago because they got infected and I was stuck in bed because my spasms or so bad. It took very little movement for me to trigger spasms like anytime I moved my arm is basically. They kept me in the hospital for that month while the infection cleared away. It was really hard to eat or do anything. I couldn't get up. It was miserable. If it gets too bad on your maximum dosage of baclofen, you can do a baclofen pump trial and see how well that works, but I would make sure you have no gallstones or anything like that going on first because all of that stuff will make your spasms trigger easier.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  3. #3
    Thanks Rybread. I did get tested for a pump 2 years ago and I can get a pump but then I chickened out and when I changed from Medicare to a Medicare advantage program I found that there is no Dr. able to do it here that is willing to accept Medicare advantage.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  4. #4
    Senior Member skippy13's Avatar
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    I get them the worst in my hands, forearms and lower legs (not the calves, the outside front) and my feet. Just having a blanket or sheet on my feet can start the spasms in my feet and lower legs at night, then sleep is out of the question. In the daytime I get them more in my hands and arms. Any movement triggers them so I can grab something, but then I can't let go (like the steering wheel or a knife or fork) and other times I "throw" the fork with a giant spasm. Not safe to sit at my right when eating I also get them in my back around my waist and in front upper abs. The ones in my back feel very strong and are just like a kick to the kidneys.

    I take baclofen three times a day and have recently (with docs advice) doubled the amount I take in the early afternoon and evening to try to calm them down. So far no luck, if anything they are getting worse. Maybe doubling up at certain times of the day is not as good as doubling all day and keeping a more constant level in the bloodstream?
    Anything worth doing, is worth doing to excess

  5. #5
    Spasticity can be hazardous to your health if it gets bad enough. You don't say what medications you are on, but baclofen is usually the drug of choice. If you max out on the oral route, then it is time for the pump.

    Anything that can trigger a sensation below the level of injury that is noxious (pain, uncomfotableness, etc) can cause spasticity.

    Range of motion, proper positioning can help a little. If you can figure out what triggers yours, and try to avoid the activity it might help a little. It sounds like yours is out of control and very uncomfortaable. Is there anyway that you can switch back to medicare for a short period of time and see if you could get the pump implanted?

    CKF

  6. #6
    Hi, I must of sounded like a drama queen. LOL During the day I have straightening spasms (entire body goes stiff up on toes etc.) when my husband transfers me to the chair or toilet...sometimes my body starts before he picks me up and I start sliding stiffly off my chair...if he wasn't there I'd been on the floor. When he stretches me my abs on down go rigid a few times. At the kitchen island having coffee my back has gone straight rigid and I started going under the island but would catch the table with my hands and stop myself until my husband could get me back up. Anyway, I take 300mg. gabapentin 3x a day and 15mg of baclofen (up from 10mg 2 days ago) 3x a day and Ambian at night and 2 Tylenol with my baclofen and gabapentin dose at night.
    I can't switch back to my Medicare until December but am going to then. I am calling my neurologist and my pain doctor tomorrow about increasing the baclofen more and my gabapentin for the nerve pain in my butt. I have a bunch of scar tissue and maybe nerve damage there from all the Avonex shots for several years for my M.S.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  7. #7
    I was on baclofen years ago (I don't remember the dosage). While it worked great in the beginning I found my spasms were getting worse. At the time I read something on the boards about people coming off such medication and experiencing positive outcomes. My spasms were very quiet and then out of nowhere I would get a violent spasm on either side above my waist which would throw me to one side. I slowly weened myself off of baclofen and I noticed my spasms became much less violent and that I could control them by "stretching" in my chair (i.e. provoking).

    Passive stretching/range of motion also plays a HUGE part in managing my spasms. I found out what it's like not to stretch about a year ago when I broke both of my femurs in a car accident. Unable to stretch for 3 to 4 months turned me into a jumping bean and took over a year to get my legs loose and my spasticity back to where it was prior.
    C5 injury with partial C6 function on left.

  8. #8
    What do you use now for spasticity? I was on 30mg a day for awhile then I had a really severe spasm from my chest down and I couldn't breath so they called emergency and took me to the hospital. They pumped me full of drugs for 4 days then transferred me to the rehab hospital for 8 days and had me on double the baclofen. When I got back home and resumed my pt my legs were getting more and more stiff so I slowly tapered all the way down to 15 mg a day. Each week I dropped down 5mg and each week my spasms lessened until they were almost gone. Then after several good months my legs just started stiffening up again. They got worse and worse until they were making me go rigid I'd slide almost out of my w/c. I increased the baclofen so I went up to 30mg a day and now went up to 45. My legs are weaker now for transfers but the back spasms are still bad so I'm wondering if I should taper down some again. I've got to get ahold of my drs. and see what they think I should do.
    The back spasms are happening where I injured my thoracic before. I was partying with friends at a club I was standing with my back to the bar...it was curved...anyway I was talking to some friends when two guys started fighting on the dance floor and one guy threw the other guy backwards and I was crushed between him and the bar. When my back healed there was a "numb dead" spot and terrible pain ever since. When I went back to the dr. he did an MRI and found that there was a good amount of atrophy after it healed. The really painful area never went away and a few days ago I fell back and hit it again. The spasms kicked in really bad and the rigidity to. So-o-o anyway I'm hurtin and nothing seems to help.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  9. #9
    I would certainly be careful playing around with the medication; you probably want to speak with your doctor about reducing your dosage again.

    With my broken legs, there was a lot of calcium etc. build up around the breakage (from what I understood from the doctor) which is part of the healing process. This definitely had an impact on my circulation and I think it also impacted the spasticity. I had people massaged the break areas and that seemed to help.

    When my spasticity was in flux after the breaks, all my prior knowledge about my spasticity seemed to be wrong. It took me a long time to figure out how to overcome. One day I noticed a particular stretch had a significant impact on the spasticity so I targeted that stretch morning and night for weeks and slowly but surely the temporary relief became much less temporary and more permanent. After which everything I thought I knew about my spasticity became true again.

    I have two suggestions: seek some alternative ideas such as massage, acupuncture etc. and push your stretching to the limit being careful not to break something.

    I only take Ditropan to reduce spasticity in my bladder and don't take baclofen anymore.
    C5 injury with partial C6 function on left.

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