I have experienced this over the last year or so. Very intense and painful muscle spasms that affect my lower back or left shoulder/neck. It seems to come from nowhere (ie. it’s not triggered by injury or exercise) and it’s so painful. It’s like a severe cramp - the sort you get in your feet when your toes start to bend funny on their own! It can last anything up to a full week, but when it relaxes it’s an instant relief and everything returns to normal.
I’ve been to the doctors twice over the past year and both times they’ve said it’s not MS related. Just wondering if anyone else has been told the same?
Im taking diazepam but it’s not touching the pain.
Just muscle spasms they said…very confusing. Of course they are in the know but I can’t help wondering if different meds might help. I have just arranged an appt with my MS nurse next week. I currently take pregabalin and sertraline. Xx
When you say ‘the doctors’, do you mean your GP? If so, I’d ignore what they’ve said, they aren’t MS specialists.
If it’s come from a neurologist, I still think you might do better getting another opinion. As Jan asked, if not MS, then what?
Are you taking any other drugs for spasticity and spasms? There are other drugs that might help more than diazepam. Baclofen, Dantrium, Cloneazepam, many others…
I must say, these spasms sound horrible. And lasting a week before easing, it does seem that you need advice from elsewhere.
I’m fortunate enough to see a neurological rehab specialist doctor. If I were experiencing what you are, that is who I would ask for help. Perhaps there is someone in a similar job in your area to whom you could be referred? You could try a google search on your local area / NHS Trust and neurological rehabilitation? Failing that, ask your neurologist if there is someone you could be referred to, even outside your local Trust?
Hi Sue - thanks so much for your reply. Yes I mean the GP - I hate to sound like I’m critisising them as it’s the last thing I’d want to do, however I have arranged appt with my MS nurse next week who I feel will take my concerns a little more from an MS point of view.
I’ve had to call in sick today to work for the first time due to this (I’m a teacher and the last episodes’ have luckily happened during school holidays). I’m devastated that it’s started to affect my working life. I began teaching 4 years ago and had RRMS diagnosis about 18 months ago. Qualifying as a teacher really was achieving my childhood dream and it’s like I already feel it slipping away from me
I’m under the Walton neuro centre so without a doubt there’ll be a specialist of the kind you mention here! I’ll follow it up, thank you
Yeah, i have occasional lower back spasms. Giant twinging pain that renders me incapable of very much. BUT don’t have it all the time and it does wear off - eventually. Last time was last week. Just bent to pick shoes up and aaargh…couldn’t move. Find it helps to do the breathing like in childbirth (yep that bad!). Went to see the GP after 2 days, cuz I was walking like a 90 yr old and could not lift a kettle, put anything in the oven…cocodamol wasn’t touching it.
He gave me Naproxen, which with cocodamol as well, eased it off and am 98% better now. I don’t think its MS related as its muscualr rather than neural. His parting shot was give it 4 - 6 weeks and then see how you go. 4 - 6 weeks! I’d be a wreck by then, thankfully feel much better
Glad you feel better - it’s horrible isn’t it! Yes I’ve been on naproxen in the past when this has happened, i’ll definitely see if it’s worth taking again. The diazepam definitely works to relieve it but leaves me so spaced out I just sit staring into space and I definitely couldn’t drive or go to work when I’ve taken it!
Hope you continue to feel better and that you’ve now found what eases it if it happens again xx
Hold on Amy - you’ve had one day off sick and you’re talking about your job ‘slipping away.’- my guess is that some of your colleagues have had more than one day off due to sickness in the past twelve months. Keep things in perspective! Your back spasm is probably m.s. related and your m.s. nurse should be able to give you advice re drugs or possibly physio.
Just seen this, it was recommended I do a search on spasms by goldrat, I get this too, right from my neck down, really painful, I use heat pads to try and relax it, I also have massages, the lady that does them said my neck and back are really stiff, she sufggested I saw my GP, not sure she’ll do anything. But glad I saw this post, x x
I use Sativex & diazepam to manage my severe leg spasms (back & neck too but the prescription was specifically for leg spasms which were making my life very difficult.) Have you ever tried ‘dry needling’ physiotherapy? It’s done using acupuncture needles but for the purpose of stabbing them (sorry!) directly into the acutely cramped muscle to free the tension/“knot” in that location. I won’t lie, it’s not pleasant but the relief it brings certainly is. I am so eager for the time to come when I can safely return to my physio - it’s the most effective treatment I can find, and combined with medication is so helpful for me to live better.
I only use Sativex at night though, as it makes me high and it’s embarrassing to me to be visibly stoned in front of others.
Thanks for the advice, I’ve had physio, I do back exercises when I can, but find these painful, I haven’t had the acupuncture, so that’s worth a mention, I thought the sativex wsn’t supposed to amke you high ? x x
I find it does make me stoned so I take it before bed instead of acting weird in front of people. Pure CBD oil won’t cause mental effects but Sativex contains THC (responsible for the ‘buzz’ weed gives you.) it’s not terribly strong but I’ve never been a marijuana user otherwise so have low tolerance. It’s annoying but it greatly helps the spasms.
hi, I read also about untraditional methods for pain relief, for example, some kinds of cbd oil. Many peaple leaved possitive feadbacks. I don’t know if its true, but still it’s might be helpful. Also, not to forget about aspirin. Aspirin treats pain, fever, and inflammation. You may read more, if you interested in. It can be used for muscle pain, arthritis, and other conditions. It is available in tablet and capsule form, as gum, or as a suppository. The tablets may be plain aspirin, enteric-coated, extended-release, buffered, or chewable. If you take an extended-release or enteric-coated tablets, take them whole – do not crush or chew.
