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Spasms H E L P !!

Morning

I am really hoping someone may be able to share their experiences with me, I feel very alone! I have the most awful extensor leg spasms, there is really not alot about these spasms on the web and I fear I have them so severe.

I take 40mg of Bacofen every night, I have just upped this by 10mg, any more and I feel drousy in the day! a specialist MS physio is going to try me on Gabapentin, anyone take this???

Any time I get up from sitting or lying my legs just have a mind of their own and uncontrollably stretch out rising me to my tiptoes for about 5 seconds then they start to relax and I come down again, sometimes these spasms lead to a cramp in my calves, it really is taking over my life and depressing me terribly! I try to sip water all day and my Husband stretches my calves and feet with excercises twice a day. I also have footdrop in both feet and wear two Safos

Also these spasms extend into my back sometimes and it is really painfull, do any of you have spasms like this?, Id like to hear if anyone has anything that they can pass on that may possibly help, I can honestly say this is my worst symptom of this wretched illness have a lovely day, hope to hear from you X

Hi hullabaloo,

I have leg and back spasms too. I found baclofen a great help at first but my body soon became used to them…eventually I was taking 80 mg a day and they were having no effect whatsoever.

I’ve taken Gabapentin for years and whilst I do find them fantastic for neuropathic pain they have never helped my spasms, having said that, I have read more recently of quite a few people that take them for spasms.

Back spasms are the ones I find most difficult to deal with…they are excruciatingly painful…I was recently given Diazapam for my back and I find taken with painkillers they do help enormously. I try not to take them too regularly as they are so addictive.

Good luck, I do hope you get some relief soon!

Nina x

Hi Nanagrace

​Does it sound like your legs go like mine, out bolt straight whenever you straighten, I will have to look into Diazapan

not sure whether it can be taken with LDN though

Hi Hullabaloo

You have my sympathy, as spasms can be extremely painful. I take baclofen and amitriptyline for nerve pain, and whilst they do help, they do not stop it completely.

I have heard that quinnine helps, so may be worth asking your ms nurse or gp, to see what they say.

Hope you feel better soon ((((hugs))))

Pam x

Hi Hullabaloo

my leg spasms come and go, and they always draw my knees up towards me. I take a very small dose of baclofen, 5mg daily, and at the moment I can live with this,

i take gabapentin for nerve pain (burning the entire length of my legs) and it is effective for that, but as Nina says, I don’t think it helps the spasms.

one other thing- I’ve noticed that if my left leg starts jumping it can mean that I need to empty my bladder.

good luck, I do hope you can reach a solution to your pain.

Kev

I find 375mg of magnesium greatly eases problems with spasm and cramp, along with a fair bit of stretching and massage. Of course, you might have to experiment a little before finding the dose that suits you, but it is a beneficial mineral and worth trying before the more serious drugs.

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Interesting Hullaballoo, as I’ve just gone down from 30g to 20g baclofen per night as it was ‘suspected’ that the baclofen might have been contributing towards my constipation.

And my spasms are just the same on 20 as they were on 30. Interesting point from Whammel re magnesium; think I’ll give that a try. I’d also suggest swimming as a form of exercise, as every time I’ve been swimming my spasms have slightly improved.

Hi again Hullabaloo,

I also take LDN and have had no problems using both. My GP knows I take LDN, but always wise to double check there are no bad interactions.

Nina x

Hi, I suffer dreadful back spasms as well,you have my sympathy. Like Nina I find diazepam really helps. I also take Gabapentin and solphodal. I find the diazepam much better than baclofen and in the two years I have being using it I have never had to up the dose.

hope you get some relief soon,

ann x

I also have severe spasms in my right leg that go up to my back. My neuro doc gives me Botox injections every 3 months. It helps pretty fast, but then wears off at about the 2–2+1/2 month mark. It is a poison so he can only give it to me every 90-100 days safely. But as long as I have some relief for that amount of time, I take it willingly. Been on so many other things, some make me loopy, & some just do not work. I stick w/ the Botox, that are deep muscle injections, not like cosmetic ones.

They also use this for migraines & bladder leakage, but I prefer to keep it for my spasms. I am also an RN, so I am knowledgeable about a lot of medical problems. Good luck w/ whatever u choose to do.

Ree*

hullaballoo have you thought of spreading the baclofen out during the day?

I imagine you take them at night because of disturbed sleep, my wife sleeps in seperate room due to my leg spasms I tried all maner of things to calm them down and now just take pain killers.

Don

Hi Don,

Any particular type of pain killers that you find better than others? I take different types at different times, paracetamol or ibuprofen or cocodomol…on their own they don’t do anything for my spasms but if I take a diazapam at the same time it certainly eases things.

Raining cats and dogs today in Herefordshire.

Hope you have a good weekend!

Nina x

Hi Skippysprite, yes I take Quinine and have done for a long time, thanks though!

Hoppity yes I do take 4 baclofen at night and yes I def feel it zonks me out a bit and gives me a good nights sleep and I really need that, I have school runs in the car to do and Backlofen in the day makes me feel a bit spaced out!

Ree RNC, Botox … now that is something I have not tried, I too get the back spasms I hate it, I will bear the Botox in mind

Clucker pigeon (luv the name)!!! Swimming fills me with dread walking with my crutches, I’d slip!!

Ive just started Gabapentin today, have been advised three a day, I dont know whether to take another !ater as I do feel a bit spaced out right now ??? years and years ago i used to take those slimming tablets (they are now banned!!) and they used to make me feel just like this Gabapentin its weird

I had a brilliant hour long chat with my new MS nurse physio lady and she couldnt stress enough about drinking fluids to help spasms, so…Ive set my Iphone on alarms every 15 mins 8am-5pm to remind me to sip water that I have in a sports bottle

it’s brilliant! but I neeeeed a weeeee! byeeee xxx

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I sometimes use a drug (prescribed by GP - “Baclofen”) to eliminate spasms. This is mostly at night when my legs are “talking to me”. This has proved very successful as a lack of sleep caused by pain in the legs can be “service affecting” both at night and in the morning.

The medication does not affect my ability to urinate (bladder function). It does seem to aid restful sleep without the lingering affects of “standard” sleeping pills.

A chat with your GP on this one may be of practical help.

Sleep is very important for anyone but for MS sufferers is vital. The mental technique of giving up the struggle to try and sleep, appears very relaxing to me but does require some practise.

Any views?

Baclofen works for me if I space out the dose over the day, 10mg a.m, 10mg afternoon and 20mg before bed. I’ve tried taking only at night but my spasms don’t totally ease. I’ve tried not taking any and I am in considerate pain and spasm severely. Areas affected are my right leg right side of my stomach and my right arm, I have started having them in my left foot. What concerns me is the nurse told me they Baclofen do weaken the muscles.

Pauline

Hi Pollypocket, yes if I take one too many I certainly know it, i do try to up it at night occasionally but I am like a zombie all day and yes legs do go weaker, I have to drive so not good! I do find Baclofen does give me a good nights sleep, Ive been taking this for a few years now, Ive also been put on Gabbapentin, tried a couple of days ago but I felt really woosy and slightly dizzy, I must persevere tommorrow to give it a good go! X

hello

i was taking ldn about 9months ago but came off because i wasnt experiencing much improvement and then went onto fampyra which i have stopped now firstly because i wasnt experiencing much improvement in my walking in fact it seemed to get worse!!!

i am now wondering should i give ldn another go

any advice on this would be welcome

kind regards

lozzie

Stop eating bread, wheat or any gluten containing cereals & avoid dairy. I did this from Sept 11th this year & leg spasms almost gone. Not as difficult as it sounds. Also increase your vitamin b intake or eat lots leafy greens or do both. Has made a massive difference to me. Numbness in my fingers is receding also.

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Morning

Whammell you have reminded me I must order some more Magnesium, I used to take this, cant remember if it helped but will try again.

Lozzie Ive been taking LDN a few years now, I’d never come off it, I tried but that awful bladder feeling always comes back, that feeling of wanting to go to wee but not emptying, so annoying! I also feel that LDN lifts your mood, hard to describe!

I’ve decided I am definitely not continuing with the Gabapentin, all I took was one tablet before bed Sun night and felt awful all day yesterday, dizzy, spaced out, fumbly fingers, thats another thing tried and tested and out the window!! my Neurologist is possibly looking at Stem cell for me in the new year, scary and alot to think about.

Toots I dont really eat bread, only have one cup of tea with milk, dont eat dairy much but eat pasta sometimes but yes I should definitely eat more leafy greens!

Have a good day all X

I just joined the forum specifically to respond to your query. The thing that helps me is lying on my stomach and stretching out my whole body to the max. I also do like a half push-up (cobra pose). Make no mistake you will probably spaz and shake something fierce for a few minutes but it does stop and I relax so well I am asleep in no time.

I am not saying I like it but as is so often the case with MS a change in perspective is the area I have made my biggest gains.

Also try a little more baclofen before your nighttime dose, maybe 10 mgs after dinner with coffee.