Hi all. I’m on 80mg baclofen and don’t get spasms, never did anyway. I just have stiff legs, had it since 1st diagnosed a decade ago. The more I increase the dosage the heavier my legs feel. Not sure is it just ms or too high dose of baclofen. Nobody gives me answers about it. Just told to take more. I nearly prefer the lower dose and stiffer legs than the feeling of no stiffness but heavier feeling legs.
Jimmy
Trust the evidence of what your body tells you and you won’t go far wrong.
“If the dose is too high, muscles can become weak so it’s important to get the balance right between reducing stiffness and not reducing strength in your muscles.”
Very good point whammel. Maybe il try fampridine and hope that works.
Jimmy
Im not on Baclofen but i discussed it with the MS Nurse whose response was , OK but we have to be careful with dosage as it does lead to muscle weakness.
I decided not to proceed with Baclofen and instead do some ‘serious’ leg stretching every morning ( right leg thigh in particular)
Spasms and stiffness are definitely helped stopped with baclofen though. It’s a good drug and most people get great results from it. I do my stretching too and it does help but never enough and short term. I’m a believer in exercise and stretching but the doctors tell me it won’t solve it. Glad it works for you. Keep it going.
If you don’t get spasms, how did you ever get into Baclofen in the first place?
Coming off Baclofen needs care too, to avoid seizures.
I’ve only just increased to 40mg from 30 in response to a rise in spasms and a start at 25mg nearly 3 years ago.
I would suggest you start winding back slowly (20 mg?) Per week from 80mg to a point where spasms start - a little twitching should be tolerable.
Sorry GCCK I have to disagree, I too take Baclofen, have done since being diagnosed 18yrs ago and mine is for stiffness, not spasms, back then it was like my legs where made of stone, so stiff, hard to move, so Baclofen was recommended and I’ve done ok with it, the only thing to watch out for is how it effects your fatigue.
Jean
Gcck iv been on baclofen for a long time for stiff legs. Without it my legs won’t move and never have any problems with it. Just it never does enough no matter how much I take. Works great for most people. Maybe it’s just ms making my leg weak or I’m not doing enough exercise.
Greenhouse I’m similar to you in that legs are made of stone,hard to move and won’t move. I’m on 90mg and not much difference and nothing else offered to me so I just put up with it as best I can.
Hi jimmyK1, I used to take 90mg and like you my legs were still stiff and my fatigue was affected, so I reduced mine to 60mg, yes my legs are still stiff and sadly fatigue still as bad. I won’t come off them, as I’m worried I’d be back to how I used to be.
Jean
Everyone seems to use Baclofen in different ways and I’m inclined to think that my legs are currently less rigid but more spasm-y than many of yours who have contributed to this thread.
I have just started back with an Osteopath to loosen my legs, hips & lower back and to invest in a massage gun to augment. Would these approaches be relevant for any of you?
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Hey Jean im bit more fatigued but not affected too much by it,think it’s the ms. Baclofen doesn’t do as much as I hoped it would for stiff legs and I did reduce to 70mg and fatigue was still there and stiff legs were worse. So il continue with 90mg and struggle on.
Thanks
Gcck spasms and spasticity are the same term used by doctor,just a different mechanism of symptom. Baclofen tizanadine both used for it. Tried that osteopath but it was short term relief. Pilates works just as good.
Hi GCCK, I myself have a therapist come to my home to do massage, it helps up to point, but only for a while,
Jean
I’m very similar in that my legs don’t spasm, but I can’t really bend my knees while walking due to stiffness, so walk with 2 hiking poles. Have been on 20mg baclofen for 3 years, and tried to put it up to 30mg but can’t as I literally fall asleep an hour later. Botox in quads has done nothing, but GCCK, would be really interested to hear about the massage gun option? Have you tried it yet?