27 replies to this topic

[millserd]

This is my first post. I have been an regular reader of the forums and they have been very helpful.

My name is Jason Mills. I am going to be one year next month as a T4 paraplegic. I am 22 yrs, in my final year of electrical engineering at Florida Tech.

I have been struggling with muscle spasms since rehab in the hospital. I am trying to go on and continue living my life but these muscle spasms are really becoming a problem, hindering my daily activities and even causing injury (where i fell while transferring to my car). My doctor put me on 10mg baclofen, which i have been taking for about 3 months.

Does anyone have experience with severe spasms? And what ideas does anyone have that can help reduce or curb these spasms?

thanks alot
jason

[Andre Cremer]

hi jason, i think you should ask your doctor for a baclofin pump, its really helpfull ive been told.
anyway good luck

andre

[allis53ca]

wake up
thc (while coffee brews and dog goes out to shit)
coffee (wile drog eats)
lyrica
thc
lunch
lyrica
thc
dinner
sometimes thc late
lyrica @ bed


thats my prescrption to no spasms....very occasonal....works for me and narcotic/opiate free

[Trinity]

10mg of baclofen is a small dose, maybe speak to your doctor about increasing the dose or adding in a different drug for spasms

[russ1]

trinity, on Nov 17 2008, 09:10 AM, said:

10mg of baclofen is a small dose, maybe speak to your doctor about increasing the dose or adding in a different drug for spasms

10mg is not just small it's tiny! - I'm on the following (daily doses), all for spasms 100mg Baclofen plus 180mg of Dantrolene plus 900mg of Gabapentin.

You definitely want to try increasing your meds.

[Hawkeye]

Jason,

I'm also a T-4 (complete) and have been putting up with spasms for 28+ years. Long story short, over they years I've tried virtually all the drugs available and found none of them worth the side effects, or they just didn't work for me.

They only thing that's ever worked for me consistently is exercise. The more active I am, the fewer spasms I have.

Good Luck...

Joe

[millserd]

Hawkeye, on Nov 17 2008, 09:56 AM, said:

Jason,

I'm also a T-4 (complete) and have been putting up with spasms for 28+ years. Long story short, over they years I've tried virtually all the drugs available and found none of them worth the side effects, or they just didn't work for me.

They only thing that's ever worked for me consistently is exercise. The more active I am, the fewer spasms I have.

Good Luck...

Joe

Hey thanks for all the repies guys.
It looks like I will for now try the advice from you Joe. Seeing you are more or less the same injury level as me and I'd rather not take a lot more meds on top of what I take right now.

Thanks again guys.
Jason

[Webwych]

Have you had the same wheelchair/cushion for a year? Maybe it's time to re-think your seating options? I have had a 99% improvement in my spasms since I got my new wheelchair...come to think of it mine started getting bad last year and I think it was because my body changed in the seven years I'd had the wheelchair, which couldn't be altered to accommodate it.

[eujei]

russ1, on Nov 17 2008, 01:27 PM, said:

trinity, on Nov 17 2008, 09:10 AM, said:

10mg of baclofen is a small dose, maybe speak to your doctor about increasing the dose or adding in a different drug for spasms

10mg is not just small it's tiny! - I'm on the following (daily doses), all for spasms 100mg Baclofen plus 180mg of Dantrolene plus 900mg of Gabapentin.

You definitely want to try increasing your meds.

wow.. thats a lot. im on 75mgt baclofen and 6mg tizanidine. but it all depends on how much it affects you.

[Hapahowlee]

Hi, my hubby is a quad and he gets a script for diazepam for spasms and muscle tightness, but he doesn't have spasms too often.

He uses his standing frame and stretches his muscles, uses a stationary bike and basically keeps his legs moving as much as he can. He also likes to transfer on to other places to sit like at the breakfast table or sofas in the living room or family room. He even used to sometimes transfer onto my office chair in the den until I kicked him out and took over the room.

Do you see a physiatrist? They can talk to you about what meds to take and what exercises you could do to help elevate some spasms. Good luck.

[KarenFerguson]

Yeah, I'd definitely talk to your doctor about upping your baclofen. My hubby takes 40mg twice a day and that really cuts down on the spasms.

Hubby was on 30mg twice a day and upping the dose just that tiny bit, really made a big difference in his spasms.

The baclofen pump, is really for those who need quite a bit of baclofen administered throughout the day - like 100mg.

So, try upping your baclofen dose, but don't go crazy, do little increments - work with your doctor - and see if it helps your spasms.

[Texaswheelz]

I'm in the no medicine boat. They put me on them when I was first injured and right out of rehab, I took them for a year or two before giving them up. I didn't like the side effects that they had on me.

I stretch my legs, abs and lower back muscles for 10-15 minutes every single morning before I get out of bed. When I wake up my legs have a mind of their own, I stretch until the spasms are completely gone. I've done it for 18 years now and will continue to do so. There have been a few times that i didn't stretch before I got out of bed and my spasms are horrible throughout the day. Some times when they feel really tight I lay on my stomach and push myself up on my elbows, sorta of a half push up and try to arch my back a push my pelvis into the ground, which really pulls those muscles where they connect from your legs to your lower torso. Normally feels good and gets rid of the tightness.

Edited by Texaswheelz, 18 November 2008 - 03:58 AM.

[Trinity]

I agree fully with stretching, I stretch out for about 15-20 mins in the morning before I get up, and the same in the evening when I go to bed, it definitely helps, although I am in the baclofen camp too, I take 50mg/day (20mg in the morning, 10mg at lunchtime and 20mg in the evening). This combination generally means the spasms are under control. However when the big ones happen it's always at the most inopportune moment!

[Texaswheelz]

Yea, my stretching doesn't completely rid me of spasms for the day, but it lessens them enough that they aren't that often or a problem. Any time I take a foot off the foot plate they'll still spasms and kick, so I make sure to do that about once every hour or two, the longer I wait the worse they are. Normally last for about 5-10 seconds at most.

[millserd]

Texaswheelz, on Nov 18 2008, 11:23 AM, said:

Yea, my stretching doesn't completely rid me of spasms for the day, but it lessens them enough that they aren't that often or a problem. Any time I take a foot off the foot plate they'll still spasms and kick, so I make sure to do that about once every hour or two, the longer I wait the worse they are. Normally last for about 5-10 seconds at most.

wow looks like my best bet will be to try to stretch more. ill also look into increasing my baclofen dosage.

thanks guys.

[the_walrus]

Meds really didnt work for me, I hated the side effects and all, Now I do some quick stretching when I wake up and it helps a bit, and if my legs really go crazy I just strap them to my footrest.

[HandicapHero]

Range of motion exercises help a lot more than most people think. I was taking upwards of 100mg of baclofen a day during the first few years of my injury, but after doing some research online due to increased spasticity, I found almost all of the sites telling me to stretch! I told myself it was impossible.. How could moving my legs help me? Im paralyzed I thought, only more medicine is going to help.. After much frustration and failure to find a drug that worked I finally tried the range of motion exercises and I was amazed at how much it helped. I still don't do it as much as I should, but whenever the spasms get too bad, stretching always helps.

[Webwych]

HandicapHero, on Feb 22 2009, 07:04 PM, said:

Range of motion exercises help a lot more than most people think. I was taking upwards of 100mg of baclofen a day during the first few years of my injury, but after doing some research online due to increased spasticity, I found almost all of the sites telling me to stretch! I told myself it was impossible.. How could moving my legs help me? Im paralyzed I thought, only more medicine is going to help.. After much frustration and failure to find a drug that worked I finally tried the range of motion exercises and I was amazed at how much it helped. I still don't do it as much as I should, but whenever the spasms get too bad, stretching always helps.

Is there anywhere online I can find/download these 'range of motion' exercises?

About three years ago, my New Years' resolution was to walk at least 3 times a week for an hour (just round the house). I kept it up for two years, and then I started *getting* spasms which I'd never experienced before. I thought that I just needed to keep walking and they'd settle down but I was wrong (I should note here that I have Spina Bifida so I may be in a slightly different position to someone who has gone from able-bodied to disabled).

Just a quick edit to say that lack of sleep definitely plays a big part in how bad my spasms get. It's a vicious circle - you get tired, you get spasms which disturb your sleep and lead to more spasms.

Edited by Webwych, 22 February 2009 - 08:49 PM.

[twisted_ophelia]

Baclofen, clonazepam, diazepam, THC... lots of med options for those who need it. I used to get awful spasms, like I was saying over in the Baclofen thread. My legs were constantly jumping around and it was bad enough that I had to use a leg strap to keep them in my chair. For some reason, over the years, my spasms just calmed down. I'ved heard it's usually the opposite--that they usually worsen over the years! I still get them but it's mostly when I'm laying/sitting down on the couch or in bed or occasionally during transferring. And in my sleep, I am told! They still do happen in my chair but not as often. Could be a seating/wheelchair thing as someone mentioned above but bodies are so strange that who knows what will work and what won't. I definitely found that getting more and more physically active seemed to coincide with a reduction in the amount and severity of my spasms. Range of motion exercises, neurophysio as well, keeping up your muscle mass, all these things may help and they certainly can't hurt! I was trying on a pair of shoes at a store the other day and one of my legs happened to kick out and I almost kicked the shoe sales dude right as he was bending over. Missed him by about an inch

[Faithful Dove]

russ1, on Nov 17 2008, 01:27 PM, said:

trinity, on Nov 17 2008, 09:10 AM, said:

10mg of baclofen is a small dose, maybe speak to your doctor about increasing the dose or adding in a different drug for spasms

10mg is not just small it's tiny! - I'm on the following (daily doses), all for spasms 100mg Baclofen plus 180mg of Dantrolene plus 900mg of Gabapentin.

You definitely want to try increasing your meds.

I agree. I am on 50 mg daily of Baclofen, and 1500 mg of Gabopentin (sp), I also take Extra Strength Tylenol, THC daily..every little bit helps.

Dove

[Webwych]

Anybody got those 'range of motion' exercises I asked about?

[HandicapHero]

Webwych, on Mar 1 2009, 02:17 PM, said:

Anybody got those 'range of motion' exercises I asked about?

Here is some information on ROM excercises.. I hope it helps.

http://www.drugs.com...-exercises.html

[Webwych]

HandicapHero, on Mar 2 2009, 10:37 PM, said:

Webwych, on Mar 1 2009, 02:17 PM, said:

Anybody got those 'range of motion' exercises I asked about?

Here is some information on ROM excercises.. I hope it helps.

http://www.drugs.com...-exercises.html

Thanks!....oh, haha I just 'got' the joke with the icon. 'Motion'! I get it! Hahaha....

[tessa]

My bro hates taking meds so for his spasms he never takes anything.
He does do a lot of stretching himself (which helps a lot) and recently, we bought this Chi Machine which also helps a great deal to reduce spasms.
His legs feel all relaxed and 'wobbly' compared to the usual stiffness.
Might be worth a try!

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[megatrig]

tessa, on Jun 23 2009, 12:09 PM, said:

My bro hates taking meds so for his spasms he never takes anything.
He does do a lot of stretching himself (which helps a lot) and recently, we bought this Chi Machine which also helps a great deal to reduce spasms.
His legs feel all relaxed and 'wobbly' compared to the usual stiffness.
Might be worth a try!

hmmmm intriguing! I might try one of these out as there is this option on a site I just glanced at!

Especially looking at the cost!

[tessa]

^yest try it! You can get really cheap ones over the internet.
Good luck and I hope it'll help!!!

[ljj]

Could you please describe the other stretches you do?

Texaswheelz, on Nov 17 2008, 10:57 PM, said:

I'm in the no medicine boat. They put me on them when I was first injured and right out of rehab, I took them for a year or two before giving them up. I didn't like the side effects that they had on me.

I stretch my legs, abs and lower back muscles for 10-15 minutes every single morning before I get out of bed. When I wake up my legs have a mind of their own, I stretch until the spasms are completely gone. I've done it for 18 years now and will continue to do so. There have been a few times that i didn't stretch before I got out of bed and my spasms are horrible throughout the day. Some times when they feel really tight I lay on my stomach and push myself up on my elbows, sorta of a half push up and try to arch my back a push my pelvis into the ground, which really pulls those muscles where they connect from your legs to your lower torso. Normally feels good and gets rid of the tightness.

[pistol_pete]

I'm 16 months post injury. I didn't start getting spasms badly until 6 months later.25mg Baclofen 4 times a day makes them manageable.
I was always under the impression that spasms eventually calmed down and disappeared after a couple of years. After reading this thread I have realised that they may be with me a little longer. Damn.