21 replies to this topic

[Avocado Baby]

Hello everyone.

I've been struggling alot with spasms, mainly in my legs but also in my thigh and buttock area. They are sooooo annoying! They usually occur at the most inconvenient moment, like when I'm getting in the car or attemnpting to drink a hot drink and they render me completely unable to sit up, move etc. Some days they're worse than others but the last few days my legs haven't actually kept still for more than a minute at a time and they're jumping around and up and down all the time (Like I'm stamping my foot)

My nerve pain has been particularly bad the last few days and this seems to aggrivate them. Sometimes when my legs go into spasm, I get a temporary relief from the pain, but other times they make me jolt so much that it hurts my back even more I keep having to put my feet back on my footplate after they've jumped off, but sometimes they spasm when I try and move them, so I give up!

Has anyone got any ideas how to relieve the spasms? Or how to prevent them from being so bad in the first place? What aggrivates yours?

I am going to see my spinal consultant on Monday so I'll ask his opinion then.

In the meantime, thanks for any advice.

[wheeels]

I use baclofen, and botox

[Avocado Baby]

wheeels, on Aug 30 2006, 10:59 PM, said:

I use baclofen, and botox

What form does that come in?

[itsjustme]

Hi Pink Ali,

My spasms are the worst in the afternoon when I've been up in my chair for a long time. I have to keep my feet strapped to the foot plate of my chair and I have to wear my seat belt otherwise my feet fly out, my back arches and my butt slides forward on the seat and I go sliding right out of my chair! You could use some strips of Velcro to keep your feet in place on the foot plate.

My spasms interfere most when I am trying to transfer and trying to cath is like trying to cath a Venus Fly Trap! The least bit of touch anywhere on my legs stimulates my legs and into spasm they go.

I just saw a new doctor last week, a physiatrist. They are encouraging me to talk to a doctor about a Baclofen Pump but I just don't think that I can do it. I do take Baclofen by mouth but the spasms persist. They suggested adding either Valium and or Marijuana both of which I turned down.

I feel pretty discouraged about the spasms right now if I don't have the Baclofen Pump surgery.

[juls]

I don't really get spasms just the odd one here and there but i have been getting a spasm in my tummy. it's normally when i sit back up after laying down and it's tiny spasms pulsating under the skin, when this is happening my stomache looks like i've got abs again! does anyone else get this and know what it's from??

[LadyPilot]

itsjustme said:

My spasms are the worst in the afternoon when I've been up in my chair for a long time. I have to keep my feet strapped to the foot plate of my chair and I have to wear my seat belt otherwise my feet fly out, my back arches and my butt slides forward on the seat and I go sliding right out of my chair!

My spasms interfere most when I am trying to cath is like trying to cath a Venus Fly Trap!

Generally I can keep my spasm under control. I take oral Baclofen 30mg when I get up and 30mg about an hour before I go to bed. (does anyone else get a diuretic effect from Baclofen? I get a bladder "feeling" exactly an hour after taking it!)
If I eat more than twice a day I get increased spasm. My legs start trying to do the can can, at which point I take an extra 30mg Baclofen. I also strap my feet to the footplate.
Like 'itsjustme' my back arches and my abdominal muscles go rigid, if not really careful I exit out the back door . Luckily I can sense when Im about to get a severe spasm and I lean over my knees and hang on to the front of the chair.
I have also been know to whack my legs hard to break the spasm (just because I do it doesnt mean you should ). The nerve pain stays the same regardless of spasm but if something makes me jump I can feel the adrenaline surge and that really hurts.
On the plus side for leg spasm? I've got great shape legs!!!!

As for trying to self cath when I've got severe spasm, I back my chair to a wall so that if I do spasm I'm not going out the back.

Edited by Apparelyzed, 31 August 2006 - 03:32 PM.

[Avocado Baby]

Like 'itsjustme' my back arches and my abdominal muscles go rigid, if not really careful I exit out the back door

Edited by Pink Ali, 31 August 2006 - 01:37 PM.

[Avocado Baby]

Quote

Like 'itsjustme' my back arches and my abdominal muscles go rigid, if not really careful I exit out the back door

Hahahaha! I know exactly what you mean! I'm always having to pick myself up after having thrown myself all over the place! It's quite difficult attempting to explain how you managed to get yourself in such a weird position in the first place!

Edited by Apparelyzed, 31 August 2006 - 03:33 PM.

[wheeels]

I take baclofen by pill form, I know of people that use a pump but my understaning is that is for very sever cases?

Botox by injection every 3 months (Going today)

[DaveP]

I'm always surprised when people seem to opt to take medication as the first line of action. I'm of the opinion that you should explore all other options before resorting to popping pills.

Spasms (within reason, of course) are good. I still have full muscle tone in my legs and I put this down to the spasms I get in my legs - it's exercise for them! Sometimes the spasms are pretty bad and my legs kick out and lock, but this isn't very often and there's always a reason for this to happen.

Spasms are a sign from your body that somethings not right. It may be painful guts, a sore back, full bladder, hang over! or many other triggers, so popping medication to stop the spasm isn't really fixing the problem that's causing the spasms - it's only stopping the spasms. And just think... this medication also affects the rest of the muscles in the body that don't have spasms.

I've seen people with such bad spasms that they get thrown out of their chairs, so this sort of situation is totally different - I thought I'd better mention this before I get blasted!

[wheeels]

DaveP,

I would love to not have to take medication.. I do work out and exercise on a regular basis but this can make them worse.

And yup you are right they happen because somthing is not right, that would be the spinal colum being all screwed up nerves severed ot bruised..

I would love to be able to treat the issue directly by fixing the nerves but until that happens I have to say that taking the medication to reduce the pain and improve my quality of life is a much better option.

[Avocado Baby]

Hi,

I know my spasms happen because something is wrong. I know what it is that's wrong too but as Wheels said, fixing the problem isn't that easy, It's not like we're ignoring it, but if fixing it is not an option or a straight forward option, then treating the symptoms is the next best thing. Don't ya think?

I know that the trapped nerves in my spine are causing my legs to spasm more and more and I'm looking to having a fusion to resolve the problem, but unfortuantely it would be major surgery with a very long recovery period so, I was looking for any ideas for the meantime. I don't think I do want to take drugs for it though. I wasn't aware that they would affect the muscles that don't spasm too

Anyway, thanks for all your advice. Greatly appreicated!

Edited by Pink Ali, 31 August 2006 - 08:11 PM.

[Okie Rick]

Baclofen was like poison to my body - had me wrecked for months as the neurosurgeon kept uping the dose from 40mg daily to 180mg. I'm back on 10mg Valium 3 times daily. Spasms aren't cured but they're a far sight better than when I was eating baclofen.

Alcohol really helps me but I don't drink more than a couple times a month.

later-
Okie
-

[itsjustme]

For me it's not just the spasms, it's the tone. They rate the muscle tone on a scale of 0-4 and I'm pretty much off the scale.

For most of you are your legs fairly limp and loose? I was at the neurologist office yesterday and I met a doctor who knows the doctor personally that they are sending me to for the consult on the Baclofen pump. He unbuckled the strap on my foot and tried to pick up my leg and asked if there was still a restraint that he'd missed. No, that's the spasticity of my leg.

He got all excited. He told me that the Baclofen pump would just make all the difference in the world spasticity. I told him that I just didn't think that I could go through with surgery but he encouraged me just to talk to to the doctor.

I'm so afraid of going through any more surgery however I'm not a big fan of "popping" any more pills than necessary either. I have to take a daily migraine med. with a slightly drowsy effect. The Baclofen has a slightly drowsy effect. Adding the Valium was actually their next choice but that has more than a slightly drowsy effect for me.

[itsjustme]

Well, guys, I had the Baclofen trial and OH MY GOSH!!! I forgot how WONDERFUL it was to sit relaxed like a normal person. It was so nice, so comfortable, so relaxed not to sit in this chair and jerk and spaz and tighten up backwards.

They did the Baclofen injection at about 8:00 a.m. at which time my legs were stiff as a board. There was no pain. Then injuection was nothing. They did the first check in 2 hours. My legs were much more relaxed. They did the next check at 4 hours when the Baclofen was optimal and I could move my legs with 2 fingers. Totally amazing because just cathing me is like trying to cath a Venus Fly Trap. My legs literally have to be pried apart and then the least bit of stimulation and together they go.

The next most wonderful thing about it was riding in the van. Anytime that the van hits a rough place in the road or a we go over a railroad track etc., it sends me into a spasm and of course unless I have my seat belt super tight (to the point of too much pressure on my bladder creating another problem) out of my chair seat I go.

I really realized just how WONDERFUL it was when all of the normal spasms began to return that evening.

Am I sold on the Pump? I don't know. Why don't more of us who are miserable with spasms have it? I posted on the Baclofen Pump Foum requesting info from anyone paralyzed who has the pump for some feedback and no one has answered.

There seem to be lots of people with CP who have the pump and I can understand that there would be a whole different set of problems for them where the pump is concerned because they are trying to walk with it but for those of us who are paralyzed and are just dealing with spasms it would be different.

The representative from Medtronics was there and understandably she doesn't understand why more of us with spasms and rigidity as off the scale as mine aren't taking advantage of this either.

[Ralph Smith]

For years now my legs had jumped off of the bed at night due to my spasms. Just last week we had changed mattresses and what a difference it has made, we also added a memory foam to the bed. The mattress is a sealy beautyrest and it doesn't move much. My wife or myself now can get up without waking up the other one for better sleep and my spasms have been unnoticeable in this bed. This is a simple option. Doing the cathes is another story. My legs crush my private parts like a vice. I asked my brother just after my accident happened to make me a leg spreader that I can use to wedge my legs apart. What we used was 1" dowel and at the ends we grind it down to roughly 3/4" and drill holes, glue it and clamp it together then add copper pipe insulating foam and duct tape to help protect my legs. I also use it in the shower and it works great. I have made the last 2 myself as the water seems to deteriorate them fairly quickly. Spasms are still bad in the wheelchair but that is the way things are until someone can think of a solution. I almost think that the spasm in the wheelchair have something to do with the seating. Maybe a memory foam on the cushion? Another funny thing is an orgasm will stop the spasms for around 30 minutes, best of both worlds eh? I wonder what the connection is there? Spasm meds did not work for me but a few puffs of marijuana seems to help better than the pills.

[rach32]

i take baclofen for my spasms im not dx as yet but the baclofen dont seem to work very well i also take 20mg diazepam a day too i hate taking them but GP tells me you cannot come straight off baclofen as it can cause fits??


my spasms

this has been going on for 3 weeks and i have to wait another 4 weeks to see neuro

[C Herod]

My husband has very very severe spasms. They get even worse if he has a bladder infection. We know right away he has an infection just by his spasms. He takes Baclofen but it doesn't help at all. He says the Zanaflex he takes works better. The only thing that has help him is phenol injections. They go straight to the muscle. I'm sure this isn't good for them, but we will do anything because his spasms are terrible. We have a big seat belt to buckle his feet in because they just go crazy when they want to. We cant get a baclofen pump due to no insurance and of course there is no medicare for 2 yrs. We have to wait. He can't dress his self, get in and out of the car, so many things he could do if it weren't for the spasms. It is by far the most aggravating thing right now. Even where he used to have therapy they said his spasms and tone were the worst they had ever seen. IT SUCKS! I agree though that they are moving and i think that is a good thing. They pretty much stretch themselves. It is definetly quite a workout for him. So we are unsure if we should get the baclofen pump or not. But i am really get tired of being kneed in the ass, face, and body. IT HURTS! If your not careful you can get the shit kicked out of you in a matter of seconds. He can trigger them too. So if you piss him off he could do some damage with his legs if your close enough. He also has them that throw him forward and lift his butt up. He has to hang on for dear life. Poor Guy. One time he hit his head on our desk because it just came out of no where and threw him forward and WHAM. Instant headache. LOL. We laughed later about.

[dolly]

hey C Herod

im 22 months post injury c6/7 also and i was getting awful spasms for 5 months and couldnt work out why. i was thrown out of my chair off my bed once and had them all day. in the end my doctors took bloods and did other tests and realised something was going on. i then had an mri scan and it was found that i have HO in my left hip, its calcification in the mucsle. could your husband have something else going on?

Everyones different but my spasms get terrible when theres a problem. cheers

[Webwych]

I find that squeezing the muscles around my calf and shin on my left leg (where I get most spasms) until it hurts a little bit sort of 'brings on' a spasm I can control then I'm good for maybe half an hour or more. The amount of sleep I get seems to make a difference to mine (good sleep = less spasm). Funnily enough I found mind worsened when I started walking regularly again, which was a total bummer.

Ice packs on my back above my lesion seem to relax my trunk and legs enough to get sleep too.

There's a supplement called 'Devils Claw' that's suppose to be good for spasms too.

[C Herod]

dolly, on Jul 23 2008, 08:25 PM, said:

hey C Herod

im 22 months post injury c6/7 also and i was getting awful spasms for 5 months and couldnt work out why. i was thrown out of my chair off my bed once and had them all day. in the end my doctors took bloods and did other tests and realised something was going on. i then had an mri scan and it was found that i have HO in my left hip, its calcification in the mucsle. could your husband have something else going on?

Everyones different but my spasms get terrible when theres a problem. cheers

I suppose it could be possible. I really think there is nothing wrong like that. He has had them since about 2 months after his accident, but i will run it by his Dr. You really never know.

Thanks

[Stickman]

itsjustme, on Aug 30 2006, 06:17 PM, said:

Hi Pink Ali,

My spasms are the worst in the afternoon when I've been up in my chair for a long time. I have to keep my feet strapped to the foot plate of my chair and I have to wear my seat belt otherwise my feet fly out, my back arches and my butt slides forward on the seat and I go sliding right out of my chair! You could use some strips of Velcro to keep your feet in place on the foot plate.

My spasms interfere most when I am trying to transfer and trying to cath is like trying to cath a Venus Fly Trap! The least bit of touch anywhere on my legs stimulates my legs and into spasm they go.

I just saw a new doctor last week, a physiatrist. They are encouraging me to talk to a doctor about a Baclofen Pump but I just don't think that I can do it. I do take Baclofen by mouth but the spasms persist. They suggested adding either Valium and or Marijuana both of which I turned down.

I feel pretty discouraged about the spasms right now if I don't have the Baclofen Pump surgery.

Wow, i know exactly what ur talking about, you explained your spasms exactly like mine are, right down to the cathing part. Touching anything down there could send something across the house if it's not out of the way. I cant find a muscle relaxer to help, and i dont want the pump either, but thwey said my cord is tethered and i need surgery to untether it, since that might be causing the spasms. do you have any hypersensitivity anywhere?