How does everyone deal with the bad stiffness in legs? I do take gabapentin and back often but really don’t feel like it helps. I feel like I’m having a permanent relapse because my symptoms never seem to ease off, I’m just sore and stiff 24/7.
Hiya Natc
Stiffness in legs is the biggest bane in my life! Like you it takes over my life 24/7.
It’s so painful and restrictive.
I find doing stretching exercises, which the Physio gave me can be helpful but sometimes I just can’t move my legs to do the exercises!
Sorry I’m not helping you but heck it feels great to talk to someone who understands about stiff legs!! Sue xx
The Dr suggested I try Gabapentin and I have a prescription to pick up next week but you say you don’t find it helps!
Hi
I take baclofen for spasms and stiffness and it does take the edge off it, might be worth having a word with the ms nurse or your gp. If you do give them a try, I found I could only take a very low dose to start with and increased very slowly.
Hope this helps.
Pam x
Hi guys, I am starting physio soon so hoping that will help, I just feel that I’m the only person who has rrms that doesn’t get any sort of break from symptoms (I know I’m not) but feels like it. Seems that rrms is supposed to be bad when having a flare up or relapse but that’s me 24/7. Maybe the gabapentin does work a bit but doesn’t feel like it to me or the baclofen. Feel like ever time I finally get to talk to my ms nurse they just say the same thing, gabapentin and baclofen are the best and to do stretching etc. Nothing seems to help and it’s getting to me now because I’m struggling to have fun and play with my young children 6, 2
Nat,
I know what you mean about being in a constant flare…my leg symptoms never seem to ease up and i have constant muscle twitches and soreness when standing (less so when walking strangely). I personally think that gabapentin made things worse but it may have just been coincidence. I am going to try pregablin next but feel like a bit of a guinea pig. Anyway, some people swear by magnesium spray. I didnt help me but may be worth a shot… good luck
Hi I sympathise with everyone, with regards to stiffness and pain.
Ive only suffered with this symptom since 2008 when I had my latest episode! It was at that time I had an mri.
Before this time I did not know that I had ms and just had periods of symptoms (RRMS).
since 2008 my leg pain and stiffness has gradually got worse. My medication has changed from pregabalin to gabapentin and back to pregabalin, (I prefer pregabalin). It has also changed strength wise.
I am just about to go back up to 450mg per day, I reduced it for a while to try CBD but too expensive when I’m not sure it’s helping!
I have also been prescribed tizanadine, which is for stiffness. The consultant has upped the dose with that too due to the pain at night. I think it does relax me more as well as taking amitriptyline.
I do a bit of Pilates, which I found on ms society.Sometimes I do yoga, if not too fatigued. I do feel a bit more comfortable after that.
I don’t think there’s anything to take it away completely now. My consultant told me it’s a gradual progression.
Its very axhausting to have to live like this the whole time So I understand how everyone is feeling!
All the best with finding something that works for you, sorry I couldn’t help more, you’re not alone.
Kim x
Terrible stiffness in legs, cant bend legs to walk. walk like a penguin.
Was offered botox in hamstrings covid put paid to that, think its all part of progression.
hope you find somethimg that works.
I have exactly the same and it’s exhausting. I also take Baclofen but found that Gabapentin causes very swollen ankles so had to stop it. Really bad atm and spoke to GP today. I didn’t know anything about any other medications so anything people can suggest I would love to hear about. Only diagnosed in 2018 and walking fine then so progression very quick to really only barely walking with 2 sticks and an AFO. MRIs show no change so just can’t understand it but it helps hearing what others are doing to help the situation.
Julie, how demoralising. Sorry that you’re having a tough time. Are you on any DMTs?
Hi. Yes I’m on Ocrelizumab. Every year when I have my MRI it shows no change which is obviously great and means the drug is doing its job. I just find it hard to get my head around that if this is the case, why has my mobility deteriorated so drastically and so quickly!
I’m also on ocrevus but i have read (on the facebook group) of others who have experienced similar difficulties with reduced mobility in their legs. I haven’t yet found an explanation as to why i am afraid. It is something that i will take up with my neuro at the next meeting in March. I have read on the Barts blog about progression independant of relapse activity, so perhaps this is the reason. Sorry i cant be of more help and hope that you find something to help
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Tin Man here - have always avoided any drugs - muscle-relaxant ? because the ‘good’ muscles would also relax and cause more problems ??
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Ooooh! Maybe I should come off tizanadine then? I’ll have to try and speak to ms nurse, if she available! More difficult now!
Thanks for the advice cracowian.
Kimx
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My wife Kym who had PPMS for up to 20 years, suffered stiffness in both legs and was offered an op to insert a baclofen pump in the tummy. The pump was connected to the spinal cord and provided liquid baclofen daily to reduce and take away the stiffness. The pump needs refilling through a simple outpatients injection bimonthly & the amount of daily baclofen was then monitored by the Dr in charge who reported to my wife’s consultant. It did work - I saw visibly how my wife Kym’s stiffness was eased through the process. The pump needs to be replaced every 7 years and the op to insert / replace led to a hospital stay of 2-3 days. Kym had a pump in, 2007 and then again 2014. Living in SE London, this was a process organised by Kings College NHS. It may not work for all but it helped in our case. Hope that helps.
Matt
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I’m sorry for what you’re going through. My neuro conversely refuses to give me MRIs. I’ve had only one which led to my diagnosis 4 years ago. His reasoning is that they don’t give helpful info on activity and he prefers to treat the person not the MRI. Because one person might have multiple lesions but not be too symptomatic, another may be the opposite. I get that but would like to know what my brain looks like 4yrs on.
I have really bad stiffness in my legs which seems to be getting worse especially if I sit down for too long. When I stand up I walk like a penguin for a bit and then it eases but it starts all over again every time I stand up after sitting down.
My stiffness is horrible, I have it in my legs , back , knees, basically everywhere !! :(((( . My neuro won’t give me anything for this either , their argument is that muscle relaxers will make me weaker over time ?? I might have to ask again . I walk around like tin man all day lol !! Gentle stretches , yoga helps slightly, along with massage , hot water bottles/heat patches etc . I hope everyone finds some relief with this ,it’s so exhausting trying to manage it every day :((
It really is exhausting! It’s frustrating as well that we want to do stuff and can’t. I hate it. I don’t feel like the neuro or ms nurses really listen or advise that much. I just seem to get the same response…it must be a flare up if your hot, stressed, tired etc but a lot of the time I’m neither of them things but still feel like rubbish 24/7. Just wish there was a little miracle somewhere that I could have to make things easier. What else can we try?!
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Tbh I get the posts about things like Baclofen making muscles weaker globally. I think I could cope with an element of stiffness if I reduced them but i get spasms if I don’t take the Baclofen and it’s that which I couldn’t cope with more as it’s just exhausting.
Hi Natc, sorry I’m a bit late with this response! I’m thinking of trying a cannabis vape as others have mentioned on here before.
l keep saying it but never get around to buying one!
Ive tried CBD capsules, I’m not sure they did much but I may not have tried strong enough mg! The higher the strength the more expensive they are (obviously).
best wishes Kimx