Results 1 to 5 of 5

Thread: Spasticity and tone limiting exercise

  1. #1
    Junior Member
    Join Date
    Feb 2014
    Location
    East Cheshire UK
    Posts
    13

    Spasticity and tone limiting exercise

    Hi there. I'm new to this forum and this looks like a good place to get some advice re my husband who has an incomplete lesion at C4-C7 caused by stenosis and the after affects of a laminectomy to decompress. 18 months on from the op, he is beginning to improve and can walk with a walker (has been able to since just after the op) and on good days a wobbly walk with a cane for a short distance. At the end of a physio session, he is able to walk a short distance with almost no aid at all. The difficult thing is that when his tone kicks in (mostly left leg and trunk), he tightens up and his movement is badly affected. This week, he tried a Theracycle assisted power exercise bike for a few minutes and immediately afterwards he was great - legs lighter and no tone. However by the evening his left knee was burning (neuro pain) when he stood up and his tone had kicked in big time. Days later it's still there though getting a little better. This isn't a new thing, it's happened often when he tries something new or ups the intensity. Have any of you guys experienced this? If so, what did you do? Any advice is really welcome as it's so frustrating that he wants to exercise more but can't. He takes baclofen 70mg daily plus diazepam and amytripyline at bedtime and 350mg Lyrica for the neuro pain.

  2. #2
    Quote Originally Posted by MoCo View Post
    Hi there. I'm new to this forum and this looks like a good place to get some advice re my husband who has an incomplete lesion at C4-C7 caused by stenosis and the after affects of a laminectomy to decompress. 18 months on from the op, he is beginning to improve and can walk with a walker (has been able to since just after the op) and on good days a wobbly walk with a cane for a short distance. At the end of a physio session, he is able to walk a short distance with almost no aid at all. The difficult thing is that when his tone kicks in (mostly left leg and trunk), he tightens up and his movement is badly affected. This week, he tried a Theracycle assisted power exercise bike for a few minutes and immediately afterwards he was great - legs lighter and no tone. However by the evening his left knee was burning (neuro pain) when he stood up and his tone had kicked in big time. Days later it's still there though getting a little better. This isn't a new thing, it's happened often when he tries something new or ups the intensity. Have any of you guys experienced this? If so, what did you do? Any advice is really welcome as it's so frustrating that he wants to exercise more but can't. He takes baclofen 70mg daily plus diazepam and amytripyline at bedtime and 350mg Lyrica for the neuro pain.
    Hi. I'm a C5 incomplete and dealing with tone/spasticity has been my biggest issue as well. I'm pretty active, but bad days, or even bad hours, can severely limit what I'm able to do. I'm on 120 mg of baclofen a day and Neurontin as needed. I tried a baclofen pump. It was helpful, but became infected after 4 months and had to be removed. I'm not eager to repeat that experience. I try to combat the tone with varied exercise. I do yoga twice a week, personal training in the gym once a week and personal training in the pool once a week; I then go to the gym and pool 1 other time a week on my own. Pre injury, I was an avid cyclist, now I am a recumbent cyclist - I try to ride 2-4 days a week. And finally, I spend 60-90 minutes a day stretching. Like your husband, brand new experiences sometimes give me a day where my tone seems to vanish; unfortunately, it always comes back. The variation in activity does seem to make a difference. I walk with a cane or forearm crutches - I decide which to use based on how I feel and what I'm going to be doing. I find that sometimes the exercise makes me sore and tight, but I actually feel worse when I don't do it. I'm sure some of that is psychological, but not all of it. I try to get up every morning thinking about what I'm going to do, putting one foot in front of the other, moving forward as best I can.

  3. #3
    Junior Member
    Join Date
    Feb 2014
    Location
    East Cheshire UK
    Posts
    13
    Thanks for sharing your experience Dan. The fact that my husband has some good movement under the tone is really frustrating. The physios often comment on it. His right leg is weaker than his left and some of the weakness is attributable to the baclofen I reckon but without it he'd be just one big spasm! A baclofen pump was mentioned to him just after his op but he's not keen at all and we're hoping he can learn to control it better without any more medicinal intervention. You sound pretty independent and younger? My husband is mid 60s and his age makes it all the harder. His big goal is to gain more independence as he still can't do things like getting in and out of bed on his own. Do you have more tone in the morning and evenings? He can barely move himself in the mornings and is always much stiffer in the evenings. The docs tell us that his tone is changeable and that it will vary from time to time. I guess some of what he needs to learn is how to work with it - sounds like you are doing a pretty good job of managing yours. Thanks again.

  4. #4
    Has he tried a higher dose of baclofen? As I mentioned, I'm on 120 mg a day (30 mg 4 times a day) and I think it helps. I know some people can't tolerate a dose that high because of weakness and sedation, but I am OK with it. The pump worked well, but I had a life threatening complication with it. However, some people use them for years successfully. I'm 54; I was pretty physically active before my accident, so I don't mind investing a lot of energy and time in the process now. I definitely have more tone in the morning. I notice I do a little better if I take my early baclofen dose 30-60 minutes before I actually get out of bed. In the evening I'm more tired and fatigued, so it feels different than the morning. The tone does vary over time. I've been through phases of days or even weeks when I thought things were really worsening because my tone made mobility almost impossible, but then, for no obvious reason, it will lighten up. This process is frustrating, but what can you do?

  5. #5
    Junior Member
    Join Date
    Feb 2014
    Location
    East Cheshire UK
    Posts
    13
    Thanks Dan. As you say "what can you do?". However it's good to know that he's not a complete oddity. Sadly even experienced Neuro physios have limited experience with incomplete SCIs and they find it frustrating that they cannot push him on when they feel he's capable. Re higher dose of baclofen - the physios feel that at this stage it could be detrimental as they reckon that the weaker his muscles, the less able to control the tone. At least I think that's the logic. We've been advised by almost everyone not to up the dose at this stage. I guess we'll just have to carry on with the snails pace of progress he is making. If his progress was plotted on a graph then it would be curvy indeed! However he is better than he was 6 months ago, so we'll plod on. Thanks again for sharing your experience. Good luck with this crazy condition.

Similar Threads

  1. Too Much Muscle Tone Causes My Spasticity
    By FellowHawkeye in forum Cure
    Replies: 0
    Last Post: 10-13-2010, 04:17 PM
  2. Spasticity and Tone
    By TMAZ in forum Pain
    Replies: 30
    Last Post: 09-01-2010, 03:33 PM
  3. Replies: 9
    Last Post: 12-27-2005, 12:15 PM
  4. Replies: 10
    Last Post: 05-06-2005, 08:12 PM
  5. Replies: 0
    Last Post: 10-26-2004, 08:39 PM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •