Along with the severe burning and flares of peak pain, does anyone have muscle spasms in their feet or hands? I get spasms that curl my toes and get all the muscles up to my knee. Naturally, some of the worst spasms are at night and last for hours. I take 30-40 mg of Baclofen before bed but that doesn’t help very much. I don’t like to take muscle relaxers during the day because of the fatigue issue. Any suggestions?
1 Like
Hmmm I have had problems with spasms as well, but not in my hands and feet. I experience muscle twitches in pretty much all areas of my body on a pretty frequent basis. Annoying but not painful. However, when I’m having a particularly bad flare/bout of pain, my muscles will spasm and tighten up to the point of extreme pain. But not typically in my feet and hands; usually more central. I pretty much have to lay flat in bed, because just trying to bend enough to get to a sitting position is excruciating. My rheumatologist doesn’t really know what this means or if it’s connected with the EM. I also don’t take anything for it…what’s the point of narcotic-type pain pills or muscle relaxers when it’s just going to keep happening? We have to be able to function and be lucid…
As I have thought about the spasms in my toes, feet and lower legs I'm pretty sure it's more related to the Multiple Sclerosis (diag. '92) than caused by EM. Those spasms through already painful, swollen, burning feet are a huge part of my every day. At times the spasms will come multiple times per minute, one right after the other then every couple minutes, but also last that long. The spasm then could be constant for 1-4 hours. I call them rolling spasms because a new one starts immediately after the previous spasm ends.
I'm sorry about your central body spasms Emily. I too need to lay flat in bed some of the time because it's the most comfortable position. I have a Grace Digital Radio with a remote control I can listen to in bed. Helps me get to the next minute.
Hi!
I get awful cramps in my feet and toes at night. Not sure if it's related or not.
Poor Mike, sounds horrendous.
I have spasums that I drop stuff on my good days sometimes on my bad I think it has to do with my EM
YES! This happens every once in awhile in my feet. Very painful:-(
Hi jstanton,
I noticed you are recently diagnosed with EM. It is good that you are looking at social networks for support. There is an EM group on Facebook https://www.facebook.com/groups/EMExchange/?ap=1 with some meaningful medical and coping ideas on this site.
I'm sorry you have to live with EM, but you can do it! Mike
Thanks, Mike! I will check it out=)
I take 200 mg. Celebrex at 7pm & 3 mg. Requip at 8pm. I have noticed that during the burning/pain episodes I do have muscle spasms. The requip helps but over the past 3 yrs. my dosage has gone from 1 to 3 mg. to cover the cramps. Elevation helps EM & muscle spasms. Sometimes I massage the calves to help relieve the foot cramps.
The muscle spasms in my lower leg, feet and toes seem to be getting worse by the day. They continue to roll through my toes, feet and ankle but are now shooting up my shin and through my calf to my knee. It makes standing or walking more difficult. Heck, it makes sitting and laying flat more difficult. I need to find another word for spasm, maybe something like rampage or insurrection or riot. A muscle spasm is defined as a twitch or fit; or any sudden, brief spell of great energy, activity or feeling. There's no brief spell about my spasms; they're set up for a run the finest play on Broadway would be happy to endure. I think muscle rampage is a better description than muscle spasm.
I have spasms, mostly in my legs. Recently I had one near my knee that wouldn't stop no matter what I did and it made it very hard to finally fall asleep.
Hello,
It might sound silly, but I use a product called Stops Leg & Foot Cramps. It is an Amish remedy. You can find it online or at some chiropractors. My daughter gets leg cramps really bad about once a month. Before I started using this, we would be up all night with her screaming in pain. Now, as long as she takes a shot of this stuff as soon as they start, we can usually get them under control and stop them quickly. You can find it at StopsLegCramps.com. Hope it helps! The good thing also, is that you can take it with any meds. It is basically a mixture of vinegar and garlic, but it really helps Taylor.
I get horrible cramps/spasms in my calves and feet. Strong enough that it makes sleep dfficult. I have had Benign Fasiculation Syndrome for 9 years. I have had EM for almost 2 years. The fasiculations are annoying but not really painful. However the cramping thing has started within the last year. It feels like I am on the verge of getting a major charlie-horse to actually getting one. I have tried to increase my potassiumn through diet but it doesn't really seem to help.
Hi again!
Mike, with regards to your not knowing how to describe the 'spasms', I call mine electric shocks. The Amyltriptiline and Naproxen have helped to a degree, but I still get the 'electric shocks, the swelling, the heat and the pain through my feet into my toes. There is a gap of approx 10 seconds before the next one starts. It doesn't even have the pattern of my pulse. 7 days ago it was horrendous, constant for 5 days.
So sorry, I have nothing to offer in the way of 'relief', just maybe lie in bed with the air con and two fans going full blast, even though it's soooo cold in there due to the weather. I can't get my body warm or my feet cool at the same time.
Life is hard.
I have severe spasms, I call them charlie horses in my legs and feet. I use a few things to help control them. First, I take baclofen, which helps with the minor ones. I also have a massage wand. If I get bad ones, it eases them up faster and I use a menthol rub with it just on my calves, anywhere else would just cause more pain. As painful as it is, I get up. My husband helps me walk around a bit. This can move the muscles around and loosen the knots. It doesn't always work and I'm usually in tears but its worse when you just lay there and do nothing. The massager does the most help. I have iced it afterwards to help with the swelling afterwards and it has helped it from coming back immediately. I also take lots of vitamin A & D and those seem to help as well. Hopefully this will help someone. I am seeing a new pain management doctor tomorrow that has treated many patients with EM and PN as well as other combos for many years so I'm hopeful of finding the right combo of meds to help me.
Look into RSD and/or CRPS. There are multiple similarities between them and EM. There are actually things you can do to at least reduce the spasms and some have almost full relief. I have just been diagnosed with RSD when they originally thought I had EM. There is tons of information online about RSD.
My spasms are now continuous through out my left foot & toes and up my shin and calf and into my knee. The right side isn't as bad, but the spasms are in my foot and toes as well. Nothing has ever touched the pain and the spasms keep rolling through. They are there all day, all night - every day, every night. Multiple Sclerosis (d.'92) is the main perp for the spasms rolling over the EM pain. The pain is excruciating and relentless. The only way the spasms have been quelled is by a femoral and sciatic nerve block, which renders my leg useless dead weight. The EM pain is still there with the nerve block, but the spasms were gone. The block was effective for ~ 18 hours, then the spasms returned.
RSD and CRPS were looked at by my doctors. What turned their diagnosis to EM was my lack of sweating. Treatments are much the same for RSD/CRPS and EM. I have a spinal cord stimulator and went through an intrathecal Baclofen pump trial - which could help with spasticity.
I rarely get spasms and when I do it's only uncomfortable, I don't see a connection for me.
I have the same symptoms and my neurologist said I have dystonia. I take Mirapex ER which comes in 3 strenghts. I hope this information might help you.
Toll
I look forward to what others might have to say on this topic. I get severe feet, leg and thigh spasms. The feet spasms almost nightly and the less I move the better. For some reason too much movement makes them last longer. The thigh spasms (when I get them, which is less often) is so severe all I can do is yell and cry. This spasm feels as though the muscle is right on the bone. Any movement at all just intensifies it.So far I really haven't found anything that has helped so look forward to other responses.