Questions about muscle cramps in ALS

[JEB1979]

I have been having terrible muscle cramps/spasms in my shoulders for the past few months, but since my fasciculations have been occurring in my calves, I haven't really related them to my other symptoms.

Am I correct in assuming that the cramps occur in the area where one is having fasciculations? Or can the cramps occur in any part of the body?

What I've read only lists muscle cramps as a symptom but doesn't specify what part of the body they tend to occur in, if it can be anywhere or it's the area where fasciculations are occurring.

 

[Caliburn]

ive read some medical journal articles that stated "cramps can occur in any affected muscle", they didnt explain further. i thought it was kind of vague. but if its helpful then i guess thats good.

i can find the articles again if you want to see them.

also; are the cramps random? i always wondered if the cramps in ALS just come out of the blue, or after use.

 

[BK2011]

I have a very slow progression ALS and I'm not a physician, a neurologist could best answe your question; but I do get severe, painful cramps. My cramps don't seem to be associated with fasiculations. They are worse when I exercise (walk around more than usual) but I get cramps even when I'm not exercising much. My cramps occur at all times but seem more frequent in the evenings when I'm sitting down or at night when I'm laying down. My cramps did start in my legs and I have limb onset ALS. Most painful are in my inner thigh. Can't seem to do much about them but grit my teeth and wait for the muscle to tire enough to stop cramping. Cramps in my calf and feet I can get rid of by standing up; screws up your nights sleep (and my wife's) jumping out of bed several times a night. My hands cramp a lot in the evening if I've used them working in the yard; before I retired I used my hands at work and they would also cramp every night. Recently, I've started experiencing cramps in my ribs and back.

I didn't see that you were doing anything for your cramps. Tonic water helps! Tonic water has quinine and it does help reduce frequency and severity of cramps. Before my diagnosis; Doctors, pharmacist, friends had recommended more hydration, sodium, potassium, and magnesium to help stop the cramps. Nothing helped. Once I was diagnosed someone recommended tonic water and explained about the quinine, didn't get the details but tried it and it worked. Stuff tastes lousy but I can live with it to slow the cramps. Took me about a liter a day at first, but if I drank that much I didn't cramp; if I backed off, I would cramp. Over time I've been able to back off it some but if I stop for a couple days the cramps come back. FDA ( Food and Drug Administration) doesn't recommend use of quinine and you can't get a pill for the quinine because of the side effects. They obviously haven't suffered painful cramps multiple times daily. Tonic water has such small amounts it's legal but it's like drinking a ton of soda; bloats you and seriously cuts down on the beer I could otherwise enjoy. Diet tonic water tastes worse and I just can't tolerate it. A low dose quinine pill would be a much better solution but FDA isn't very receptive to the idea, guess there just aren't enough people like me bugging them for it. Up side about tonic water is it's relatively cheap. Try it and see if I t helps you.

 

[pearshoot]

I used quinine tablets for years for charley horses as did many others. FDA in all their wisdom pulled it off the market because there had never been a scientific study made to determine effectiveness. Expect there is lots less side effects that most drugs on market today

 

[TeresaElizabeth]

I actually had a question about cramps. Sometimes when I move my leg in a weird position ill get a cramp. But it doesn't happen all the time. In als are the cramps with certain movements or are they random?!
I have had emgs and they were clean and I'm fairly certain I don't have ALS. But when it happens my thoughts go there even if its just for a second!

 

[AfraidButNotAlone]

My cramps are somewhat different than BK's.

I get cramps in my legs if I don't move around for a while. I also get cramps in my hands and feet where I don't have fasciculations. I do get cramps in my forearms where I do have fascics.

If you don't like tonic water, bananas might help. The potasium is good at relieving/preventing cramps. Of course, I can't guarantee anything.

 

[zoohouse]

I have only known my husband for 4 years, but for at least 3 of them he had muscle cramps in places that I had not normally seen, in my 30 years as a nurse. I put it down to all the physical work that he did in extremely hot weather, and dehydration. I use to make him jugs of electrolyte drink mixed and ready to drink, to take with him that helped a bit. When they worsened I did research on magnesium and vit D or calcium ratios, and got him supplements. That worked for a bit, and then the tripping and falling started, along with fasciculations in his back, abdomen, and arms. Those started in Jan/Mar 2012, and by May I was pretty sure he had ALS. He was finally diagnosed in July/12. Tim is not a partial quad, in a mobile wheel chair, and rarely gets cramps anymore. If he does it is in his hands, which he can still use a bit. Stretching at least once a day helps a lot, so I recommend a stretching regime for morning and night. We can still have Quinine prescribed in Canada, although the tonic water works.