Hey all, I’m up to 80mg a day baclofen for a while now and I’m getting no relief from the stiff quads. I actually feel bit worse. Mornings are the worst for me. There must be some way to ease the stiff legs. Walking is painfully slow and laboured. I’m trying different times taking it and not once has it helped. Am I just stuck to be like this
Jimmy
Hi Jimmy
I’ve backed off my Baclofen because whilst it reduces stiffness, it also weakens the legs. On around 25mg a day now but having stopped working, I spend more time stretching now, which is a superior, drug-free solution. Yoga poses like child’s, downward dog and sphinx poses should give the back, back of the legs and front of the legs a good stretch. There are others which will give a side & hips / glutes a stretch as well.
Graeme
Hi Graeme, I agree with you with stretching but my spasticity seems hardcore and I need drugs to release the stiff legs/hips. I do my stretching but whilst I feel great for 10mins after then the stiff legs remind me that I need more. 25mg is a low dose, you felt your legs get weaker with that. Iv never felt weakness,I think ms is just making them weaker,I could be wrong though.
Thanks
Jimmy
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In addition to the stretches, I also use a foam roller to work on the knotty bits!
Know what you mean about the 10 mins thing! I feel great after a trip to the chiropractor too, but start to pay for it after a couple of hours. It takes determination, but the stretching & rolling needs to be little & often - perhaps 3 times a day if you can but only a couple of minutes each time.
I also use an exercise bike. Hurts like hell and am not using it for CV work, but persuading the bad leg to follow the same shape as the good leg does wonders for opening up movement as mere walking tends to become a shuffle. Warning though: I don’t do this unattended as can sometimes have difficulty getting off the bike. Anything to keep the machinery moving!
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Hi, like GCCK says…baclofen can reduce stiffness and spasms, but too much can weaken muscles, to the point of falling.
I was given it and told to find my own best level, without any warning. I was up to 80mg a day…falls aplenty!
I believe it’s what put me in wheelchair early on.
Boudsx
Graeme I agree with you with exercises and stretches, I find it definitely helps. I do my bridging exercises alot and a few other that physios taught me. I use therabands for strength exercises. I have a foam roller and a muscle massager that I use alot too. Exercise bike helped but you’re using different muscles for it. Im trying to target certain muscles but I can’t seem to so baclofen is my way and that’s not working as good as I thought Next step may be fampridine.
Thanks
Jimmy
Hi bouds, I hear and read about baclofen causing weakness but I think I don’t have weakness yet. I still have stiffness at 80mg so maybe it is weakness or I just need something else cos I’m getting no relief at this level. I was given it and never warned about weakness or falls. I just take it and hope I get some relief.
Thanks bouds
Jimmy
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I started on a low dose (25mg I think) of Baclofen but after 6 months stopped using it as it tended to make my legs go wabbly. I have used nothing for the last 10 or so years, I just make sure I’m holding onto something stable or connected to the wall when I get out of the wheelchair!
I’ve been taking Baclofen for the past 16yrs, awful stiffness in my quads, I take 55mg throughout the day, I was referred to Sheffield Hallamshire hospital for Sativex to see if this would be any better, after a long consultation and exam, the neuro said Sativex would take the stiffness away and I wouldn’t even be able to stand up, I do use an indoor wheelchair on really bad day’s, but do still like to try and walk around my bungalow using a walker, use a scooter outdoors, but if I lose the stiffness then I’m in the wheelchair and getting hoisted permanently, so no thanks, if that day comes, so be it, now instead of thinking the stiffness is a bad thing, I don’t.
Jean
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Thanks Jean that’s an interesting read of your experience. I was thinking of trying sativex but I don’t know where to get it. I’m worried about taking too much baclofen and it causing weakness and I won’t be able to support myself. I kinda walk with a stick or rollator for short distances but the horrible stiffness in my quads just slows me down. I felt if I eased the stiffness then I’d walk bit better. So today I took bit extra baclofen and I feel less stiff but I still walk slow. I’m deflated now. Don’t know what to do. Maybe fampridine is my next solution.
Thanks
Jimmy
Hi jimmy, I get where you’re coming from, that’s how I am, but have bad balance too, so walking isn’t great, so use wheelchair and scooter, I used to take 90mg a day, but that added to my fatigue as well, so cut back.I hate to be the voice of doom, but I think this is the way it is. I try to exercise to keep things going, but sadly now that is getting less, very frustrating, I have SPMS, not sure what yours is ? Anyway just take care and od what you can, when you can good luck.
Jean
Hi Jean, iv rrms for 12 years and been taking baclofen for 9 or 10 years I think. I’ve never got much relief or got what I was expecting it to do but I keep taking it. Dose increase every 3 or 4 years. Up to 80mg and still have stiff legs mostly quads. I exercise too to keep my strength and keep things moving too,I try anyway. I get fatigue too sadly. I just don’t know how much more I can take before I get weakness or if I’m weak already at 80mg. Im doing what I can do cautiously.
Thanks
Jimmy
Hi Jimmy, to be honest I’ve never had a lot of relief from Baclofen, but if I didn’t take any I know I’d go back to how I was before I started on it, my legs were so stiff I couldn’t even bend them properly, I too try with the exercises, but sadly I now have muscle weakness because I can’t do enough on my legs, so its a no win situation, I have a lot of symptoms, always have, but sadly this is the nature of the beast, all any of us can do is keep trying, keep going. Good luck Jimmy and as I always say, keep 
all the best.
Jean
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Hi Jean, my legs are always stiff but sadly it’s both legs now and I’m just about able to bend them. I have muscle weakness too and try to keep the strength with exercises when I’m able to. It’s a symptom I’ve had since diagnosed and never had much relief from baclofen. Sometimes I do but most time I dont. It is the nature of this confusing beast. I try to keep smiling but it’s getting tougher. All the best Jean.
Take care,
Jimmy
It has been interesting reading everybody’s experiences with baclofen. I’ve been suffering spasticity in my left calf for at least seven years, and in my right calf for about four years. My neuro doesn’t want to put me on baclofen because I’m still reasonably mobile, although I really feel the stiffness if I’m on my feet for too long. “Too long” seems to be getting shorter, so I may end up on baclofen eventually, but I’ll put it off as long as possible.
Hi cheerful dragon, it is good that you are getting info about baclofen here. It’s not for everyone,some people can tolerate and some don’t. If you are reasonably mobile and spasticity isn’t too troublesome then maybe you are better off without it. Stretching and natural products like magnesium may help you more. Your neuro is cautious about giving baclofen to you. Im going through a phase that ms is chipping away taking bits away from me and is troublesome. Do what you can and stay well.
Jimmy