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muscle spasms

i have been suffering with muscle spasms in my lower back for a few days now. my lower back muscles feel very tight and when they twitch its so painful. also my muscles in my sides and legs keep twitching. has anyone else suffered with this?

tammie x

Hi Tammie,

have you tried a muscle relaxant ? Diazapam ? i have this on my back as one of my ‘pains’ relating to my bladder ? Speak to your doctor. You’ll find something , I’m sure.

keep smiling

Cath x

thank you. i have doctors at 10.30 today so hopefully he can give me something as its so painful x

I get this too Tam. I take Gabapentin and Baclofen for mine but was thinking of chatting with GP about Amitryptilene as my MS nurse said this works well. It is very painful though isn’t it.

Let us know how you get on at the GP. Be interested to see what the G{ says.

Shazzie xx

will do shazzie. i do already take 50mg amitrypiline at night. its difficult when i go to the doctors cos i haven’t actually been diagnosed yet. i have seen a neurololgist but waiting for mri scan .

tammie x

my doctor has prescribed my baclofen 10mg 3 times a day. ive noticed it says avoid alccohol!!! i rely on my couple of glasses of wine at night to help me sleep.

tammie x

I’ve been taking Baclofen for 10 years now and have never had any probs having a couple of glasses of wine before bed. I remember mentioning it to my doc and she said wine is fine but to avoid the spirits.

Shazzie xx

1 Like

hi tam

i’ve recently been prescribed baclofen which works really well on the spasms which were keeping me awake at night.

but man! doesn’t half knock you out!

i have to take 1/2 a tablet 3 x daily.

it’s tricky for me to cut them with a knife so i bite them in half.

one night last week i woke up in agony so reached for a baclofen and was too sleepy to bite it in half so i dropped a whole one.

woke up feeling like i was under sedation.

all day i felt that i needed tieing down so that i wouldn’t float away!

good med all round.

carole x

i have been told to take one whole one 10mg 3 times a day. do you think i should start on half?

tammie x

Carole. You can easily snap them in half. That’s what I do and yes they really knock me out too but good for the pain.

I would start with half of one Tam as I am sure I was told at the beginning to titrate up to 30mg daily slowly. I am now on 50mg.

ok thank you so much for all your help and advice. does it work straight away or does it need to build up in your system before it works

tammie x

hi, it’s not the kind of med that needs to build up, it works very quickly. i found at the start that if i took too much at night, i went out so cold, and that i didn’t move at all for so long, when i woke up my muscles were so badly in spasm that it was quite painful to get going again. so i’d advise a slow build up too.

wendy x

Hi Tammie

Yes. I would build up slowly otherwise you might be like a zombie (if you know what I mean).

I started on 5mg a couple of times a day, then upped it to 5mg morning and afternoon and 10mg at night, then upped it daily til I got to 30mg and I waited to see if that helped then upped it to 45mg per day which works for me.

Shazzie xx

NOT by any means a recommendation, but just to mention I don’t avoid spirits either! Been doing it a few years now (Baclofen all the time, spirits only occasionally - but once or twice heavily). Haven’t managed to kill myself yet, or indeed had any adverse effects whatsoever. I can’t remember the last time I even had a hangover, despite occasionally deserving one. Maybe it’s because MS feels so like a hangover anyway (with a bit of jet-lag thrown in), that I can no longer tell if I’ve got a real one!

Tina

x

Morning. I was watching TV last night and I got the most excruciating muscle spasm in my right toe. It kept happening, like an electric shock. I took two co-codamol at bedtime and it was OK during the night, but kicked off again at 7am so I got up.

I take 10mg Amitrytptiline at night but this just makes me sleep a bit better. Any more and I would be able to audition for an extra’s role as one of the walkers in ‘The Walking Dead’!

Louise

i take 50mg amitryptiline which does help me sleep but im sure it causes me to dream every night.

tammie x

I have not been diagnosed with ms yet but am waiting to see an ms specialist. I have really bad muscle spasms in my left leg and it’s now starting up in the right leg. I have been on 40mg of Amitriptyline for a while now along with co codamol and Pregabalin but none of these are helping at night. Muscles spasming in legs and back at night keep me awake and are very painful. Hoping to be put on medication that works after the diagnosis from the specialist.

I am on:

  • gabapentin 200 mg x 3 times per day
  • pregabalin 300mg at night
  • omeprazole 20mg x1 in morning
  • betahistine dihydrochloride 16 mg x 3 times per day
  • gilenya (fingolimod) 0.5 x 1 per day at night
  • paracetamol or co-codamol up to 8 per day
  • vitamin D x 5000iu per day

but now been put on 1/2- 1 x 10mg tablet of baclofen at night, but it doesn’t seem to have helped with the spasms and pain. ive noticed that lots of people on here have been prescribed a lot more baclofen- was this your decision or neuro/gps?

spasms/pain are waking me up at 3-4 am which is a total pain in the bum and i need some solution to this as i am useless the next day (thank god ive been signed off) but its not fair on my wife.

how have anyone else’s gp/ neuro/ ms nurses been in upping the dose?

cheers fluffyollie xx

Hi Ollie,

I was only ever put on 1/2 - 1 x 10mg Baclofen as a starting dose, and told I could raise it after a few days, if everything was OK, as it’s considered a very low dose. I’m now on 6 x 10mg a day, + 5mg valium, + codeine, paracetamol and/or ibuprofen as needed - all up to maximum dose - though I rarely take that many painkilers, unless I’ve “done my back”, which is so painful I’m scared to move - but only indirectly a consequence of MS (actually an injury, but due to weak muscles).

Recently, even all that lot is starting not to work.

Don’t think I’ll be allowed to raise the Baclofen, because my last neuro (though not this one so much) was not happy I was already on 60! And I myself am worried about “where do we go from here?” if I’m already pushing max doses, and I might have 40 years left still to live with this thing!

But I wouldn’t worry at all about being on - or asking to be on - more than 10mg.

Ordinarily, they start with the lowest dose that just might help. If it does, well and good. If not, you usually get the all-clear to move up.

Tina

Generally the maximum daily dose of Baclofen is 80mg. I don’t think I’ve been on as little as 10mg ever, when I started it was something like 10mg X 3 times a day. I’m now taking at least 60mg per day and can go up to 80mg. I think I sort of increased it my my own, but told the doctors what I was taking and they’ve never had a problem with it. I’m also on Amitriptyline - 40mg per day and Cloneazepam, 2 - 2.5 mg per day. (Cloneazepam is what stopped me waking in the night in spasm; it’s been a miracle drug for me this year!)

Even so, there are odd times that my legs start river dancing all on their own! I wouldn’t mind so much if they’d do what I tell them to do ever. I can’t pick my right toes up on demand but when spasms start, they’re picking up perfectly, if a little painfully!

Sue