17 replies to this topic

[marka]

first time contributer. my name is mark and i live in australia. i have an incomplete sci at c4 5. just lately in the past 2-3 months my legs hhave gotten much stiffer and painful, to the point that i can no longer get from bed to chair without help. i as wondering whether any of you other people out there who take baclofen for stiffness have noticed any difference or am i just deteriorating with age. its been 16 years in a chair.

[goose]

hey mark

welcome and glad you joined.
how long have you been taking Baclofen? sometimes,your body gets used to it and you have to up the dose or change to another med. alot of things can cause stiffness for example change in weather, cold,rain,uti,... i'm sure you've had alot of experience with these things.
personally,i weaned myself off of Baclofen years ago. maybe, try stretching and doing range of motion. also, staying warm helps me.
as you know sci is alot of trial and error.

[Chel]

Welcome Mike!

Welcome aboard; I agree with Goose, it can be a number of elements I was on baclofen three times daily, but still had the stiffness so bad that while in Dr. office it was like I was breaking, he thought maybe my body had adjusted to it. Make sure to check with your Dr. also; sometimes they can try something else. Hope it gets better and you find relief soon.

[plank]

Cooee Mark

Welcome to the forum. I've only been at this SCI caper for 14 months so I've still got a lot to sort out. Spasms, spasticity and Baclofen are a real puzzle. I am not certain that Baclofen actually works. I am sure though, that exercising and stretching have an effect. The less exercise the tighter my muscles get. On the other hand, the more I exercise the tighter my muscles get!!! And then there's Botox to consider. My doctor and physio are both advocating this but I am reluctant to go there yet. I know this has not helped but I just needed to say hello.
Plank

[hannibal]

For your baclofen problems, you might want to talk to your doctor about a baclofen pump. They actually put in the area of your belly and it injects the baclofen into your spine.

[mellowgator]

marka,

i don't take bacolfen. my doctor prescribed it to me and it put me in a coma so i decided against taking it. i still have valium but i hardly ever take it. on the days that i have pain issues my spasms are strong. i handle my spasms by smoking a bowl of pot. in all the 25 years i've been paralyzed nothing helps me like this. i also stand in a standing frame and stretch and do rom most every day and this helps keep the spasms at bay.

i'm not sure why your spasms are so bad lately. after 16 years you'd think you'd have sci sorted by now. are you suffering any other side effects? perhaps if you have a uti or other heatlh issue it could explain the spasms. i suppose barametric pressure could contribute to your woes.

best luck to you,

mellwogator

[Tetracyclone]

syrinx?

[Heretic]

mellowgator, on 12 May 2011 - 03:45 PM, said:

marka,

i don't take bacolfen. my doctor prescribed it to me and it put me in a coma so i decided against taking it. i still have valium but i hardly ever take it. on the days that i have pain issues my spasms are strong. i handle my spasms by smoking a bowl of pot. in all the 25 years i've been paralyzed nothing helps me like this. i also stand in a standing frame and stretch and do rom most every day and this helps keep the spasms at bay.

i'm not sure why your spasms are so bad lately. after 16 years you'd think you'd have sci sorted by now. are you suffering any other side effects? perhaps if you have a uti or other heatlh issue it could explain the spasms. i suppose barametric pressure could contribute to your woes.

best luck to you,

mellwogator

That's a good enough excuse for smoking the old wacky....

[rollingtrouble]

They had me on baclofen for awhile. I hated the way it made me feel weak all over, so I quit taking it. Like others have mentioned here, I found smoking a little weed controls my spasms much better for me. It doesn't take much for me, usually a couple of puffs and I'm good.

[Stickman]

I've tried botox in my adductors in January and it helped alot, I have the stiffness and spasms in everything from the waist down, so that helps with cleaning between the legs. So maybe try botox in which ever muscle group thats giving you the most trouble. Good luck.

[mcjane]

I read the side effect of Baclofen can be increased spasms so I never bothered to even try it. But I did purchase a MOTOmed, an electric exercycle that works wonders in relieving spasms. It was kinda pricey but worth every penny. Check out their website. www.motomed.com

[pinkcloud]

marka, on 10 May 2011 - 04:54 AM, said:

first time contributer. my name is mark and i live in australia. i have an incomplete sci at c4 5. just lately in the past 2-3 months my legs hhave gotten much stiffer and painful, to the point that i can no longer get from bed to chair without help. i as wondering whether any of you other people out there who take baclofen for stiffness have noticed any difference or am i just deteriorating with age. its been 16 years in a chair.

Hi Mark

Me doctor told me that Baclofen can do this

Thing is I was put on Baclofen for real bad spasms starting, and the spasms have got worse. But is that because the baclofen or because i'm deteriorating I'm not sure? The more pain killers I'm on the less I feel the warning signs, So me spasms are me messengers who tell me i'm injured below level of sci (phanton or real injury). Before baclofen above injury started to spasm too.

I been put on clorazepam to further help with spasm yet still it goes on.

I do know you have to be really careful if coming off or reducing levels, Mr mccelland in this country who looks after Simon, our boss on here and who does baclofen inplants. So please do be careful on this one.

I so hope its the drugs not deterioration for you, 16 years with sci - big respect I'm only in the baby stages really so cant help much, i chuck me leaflets away because they scare me, I dont like taking meds but am sure I remember reading they help alcholoics come off alcholol and they can make spasm worse too but you can google and get the information leaflet downloaded.Its the only source I trust and wont pass details onto you incase its not the right one, its by the nhs here but your country may say different stuff.

Chat again soon

I have spasm in me back and have botox and its fantastic, but its wearing off now and can I tell it is It does sting and hurt real bad and feels so yucky as the body tries to fight against the poison (well i did) but so worth it for me.

Please keep us posted or pm me with progess, thanks (drunk on tea, i cant have drink because of meds especially baclofen lol)_

[Big E]

I know that stiffness all too well, It sucks bad. Baclofen or any other muscle relaxers at any dose have never worked for me, first started getting real stiff like that about 1yr after injury. Only thing strong enough to depress the central nervous system in me and relax those muscles has been oxycontin. If I don't take it regularly, as soon as it wears off, I start getting stiffer and stiffer until I simply can't move like you said.

[kiwiquad]

Gidday & welcome Mark,
although I've been a Valium user since day one in 1983, I've trialled Baclofen with yucky side effects & was stiffer than without it. I had Botox in my calves & upper arms 3yrs ago, but unfortunately it's long worn off...It's an awesome short term fix!
Sorry, not much help, but if you are offered Botox, I say GO FOR IT, you'll be transferring without help within days.
Good luck.

[ismael]

You might want to try the baclofen pump it works very well for me

[Dillon]

Hi,

I first want to ask you whether you have or have not been exercising your legs? Exercise for at least range of motion is critical to keep our legs member and flexible. I know if I forget to range my legs for a week or two my legs stiffen up and my spasms increase.

I don't think it has anything to do with age. My suggestion, again, would be to start stretching, exercising or ranging your legs daily or as frequently as possible.

[Christy]

Oral baclofen never helped me much. I used to be super stiff before I got the baclofen pump. It took a while to get the dosage right with it, but it works good for me. Range of motion a couple times a day helps too!

[nikkix24]

Hi im a newbie to all this, was wondering if there was any support groups or anyone on here who has children with the pump fitted as my 6 year old son has one, recently fitted in June. x