I’m 72 and have progressive relapsing ms.
I find now that I as the day progress I get very stiff which I now find difficult to counter.
In the past I would find that lying down for 20 minutes provided a degree relief. Less so now.
Each week I have an exercise session which involves being ‘physically stretched’. Again this provide a degree of relief but less so now.
I would be really interested in hear what I can do or have done to me that could reduce the stiffness.
Not sure what to suggest as I’m 60 and in the same boat. I think most of us are, particularly as we age and as the disease progresses.
I had a “good day” yesterday - was able to get around and do a bit more than usual but have really paid for it today! The sweet spot between too much and too little exercise is getting smaller and smaller.
I think we should make the effort to stay supple, even if it risks a bit more pain. The alternative of less mobility seems worse but I guess eventually it will envelope us…
One thing I’m curious about: not heard of progressive relapsing MS before. Do you mean Secondary Progressive, where you were once Relapsing Remitting but have now transitioned into the Progressive phase of the disease?
Graeme
Hi, I take Baclofen for stiffness and spasms, have done for years, as when I was 1st diagnosed with SPMS I was like the tin man, so very stiff, now along with exercise this helps me, but it all depends how you feel about taking meds, this is the only 1 I take for MS. I’ve heard of some people having SPMS and still having relapses, a lady I’ve known for years does and her neuro put her back on DMD’s. Hope you find something for you very soon.
Jean
Thanks GCCK for your input.
I get the names for the various MS stages mixed up so you may be right.
I have a three wheeler bike which I go out on a couple of times a week depending on how I’m feeling. By the time I get back the stiffness has returned with a vengeance and I do mean a vengeance.
Thanks Jean for sharing.
I too take Baclofen and it’s very effective during the night in calming down the twitching.
Less effective during day.
I’ve been taking it for years with good results but it seems to have lost its potency of late.
Well I’m sorry to hear this, I was referred for Sativex, which again is aimed at stiffness, I didn’t get it as I was told if I lost my stiffness I’d be permanently in a wheelchair…I am now, so it wouldn’t have mattered, but I just wonder if it could be good for you.
Jean
Jean,
Thank you for the suggestion. I’ll look into it.
Hi why would loosing your stiffness put you in a wheelchair thats a new one on me?
I tried SATIVEX its vile and a waste of money. You have to have a really good neuro who will let you have the prescription, and i was so excited. Got to keep it in the fridge which was a nuisance.
THE feeling it gave me was horrible i felt dizzy, sick and could barely walk and fell the first time i was on it. My impression was it didnt have the stuff of cannabis that makes you high, but that isnt quite true. it has almost equal parts of THC and CBD. nOT FOR me.
i am 72, i use stretches in the morning when my stiffness is worse, it seems to get better for a bit, then later when it returns I do stretch again. I try to walk a bit everyday in the house but its getting harder and harder for me. looking for a small electric wheelchair for my little bungalow been struggling with this disase PPMS since 2000. BACLOFEN is supposed to be good, but i find all the drugs for MS i have tried make me feel horrible. xxx
Hi crazy chick, the reason he said it would put me in a wheelchair was because of muscle tone, or lack of it, so the combo would have led to that. My muscle tone has gone, even though up until recently I was walking with a walker indoors, so thought I was doing ok.
Jean