fasciculitis

[gunnyl]

I have been dealing with fasciculitis and severe charlie horses in my calves for the past 2 months. The fasciculations are non stop and the charlie horses only when I sleep. The neurologist says the the fasciculations are benign but can't give me a reason and my rheumy says that it's not Wegeners related. Anybody else experience anything like this?

[delorisdoe]

I am going to google the word fasciculitis.

[Trudy]

I just love how doctors use the term "benign" when they do not know the cause. Are you on prednisone? If so, do you take calcium/magnesium supplements? This along with making sure you drink enough water might help with the cramping and muscle twitching. I recently had a bout with horrible leg pains. Accidently I forgot to take the pain medication (Tramadol) I was taking for something else before going out shopping. By the time I got home I had missed 2 doses and realized I also was missing the leg pain. I weaned myself off of Tramadol over the next few days and have not had the leg cramps since. Researching Tramadol I found this is a not so common side effect. My point is ...it is hard to know what the drugs we have to take are doing to us.

I have tried different Cal/Mag supplements and what works the best for me is Liquid Cal/Mag by Carlson (they are not liquid but actually a gel cap). I do hope you find something to give you relief.

[Dirty Don]

I have been dealing with fasciculitis and severe charlie horses in my calves for the past 2 months. The fasciculations are non stop and the charlie horses only when I sleep. The neurologist says the the fasciculations are benign but can't give me a reason and my rheumy says that it's not Wegeners related. Anybody else experience anything like this?

Yes, me too...muscle cramps, twitching, even foot cramps in my dropped foot that I can't feel that well!! Jeez! Rheumy (head of WG team) says same thing, benign and probably not related...huh? Didn't have them before..maybe drug related, but doc is not helping me here...we'll have a 'talk' next week!! LOL...take care...I've been on acetominphen for pain...not much, but it helps with the muscular stuff too it seems...

[drz]

I used to have lot of them and they were very painful. One trick I learned at Mayo was to not try straighten out my hand or toes when they cramped up, but to rub the muscles nearby to loosen them up and relieve the cramp. I always thought mine were related to my diabetes and related deficiencies in things like calcium, vitamin D, and maybe Blood Glucose being out of control but they got worse after I was diagnosed with Wegener's and then slowly got better as I got into a drug induced remission of Wegener's. The doctors attributed them to various deficiencies in my body from being malnourished during the Weg stuff and gave me lots of supplements which seemed to help some.

[Sangye]

Make sure you're getting enough salt in your diet. Adrenals need salt to function and pred really messes them up. Calcium and magnesium deficiency can cause muscle cramps, as can potassium deficiency. I've found that I get an odd kind of cramping (along tendons of my ankles and feet) when I'm really worn out. It's not at all the usual foot cramp. I never get those or charlie horses. I gently stretch it out until it gives. Never walk on a cramp to undo it-- it tears muscle fibers and will hurt the next day.

[gunnyl]

I want to say thanks for all of the Reply's! At least I know I'm not alone on this one. The Neuro Dr tested me for Magnesium and Vitamin D a couple days ago but I haven't gotten the results yet. Thanks for the tips on the supplements as well. I am taking Citracal + D twice a day right now but no magnesium supplements. When the test comes back I'll look for the Carlson Liquid if he says I'm deficient on anything.
Happy New Year to all in the Group!

GL

[Thakator]

I'll second Sangye's mentioning the potential potassium deficiency - - especially if you take a diuretic. My rheumie gave me a potassium rx to take on those days in which I also take a diuretic and it works (for me at least). Had plenty of cramping and charlie problems before, none since adding the potassium.

[pberggren1]

Make sure you're getting enough salt in your diet. Adrenals need salt to function and pred really messes them up. Calcium and magnesium deficiency can cause muscle cramps, as can potassium deficiency. I've found that I get an odd kind of cramping (along tendons of my ankles and feet) when I'm really worn out. It's not at all the usual foot cramp. I never get those or charlie horses. I gently stretch it out until it gives. Never walk on a cramp to undo it-- it tears muscle fibers and will hurt the next day.

Thanks Sangye. I did not know that about the muscles tearing. I get a cramp in my feet now and then and I stand up right away and walk it out. Not any more.

[Al]

I want to say thanks for all of the Reply's! At least I know I'm not alone on this one. The Neuro Dr tested me for Magnesium and Vitamin D a couple days ago but I haven't gotten the results yet. Thanks for the tips on the supplements as well. I am taking Citracal + D twice a day right now but no magnesium supplements. When the test comes back I'll look for the Carlson Liquid if he says I'm deficient on anything.
Happy New Year to all in the Group!

Yeah--the cramps and such seem to come with the territory. Some might be exacerbated by the pred; others (particularly the fasciculitis), are likely related to diet. Problem is, at least for heavy kidney involvement, you have a much tighter tolerance for things like sodium, potassium, magnesium, phosphorus, and calcium, since the stressed kidneys have to process all that stuff. Healthy people can, within reason, ingest all they want, and what is not needed will be sloughed off. Those with stressed kidneys can't operate this way. The trick is finding a level of intake that is enough but not too much. As for Vitamin D, that is a tricky subject. Vitamin D comes in several forms; that produced from sunlight, and from most supplements, must be further processed (mostly by the kidneys) to be useful in the body. So you can take all the supplements you want, and stay out in the sun for hours (though that is not recommended for pred users), and there is still the bottleneck of the kidneys before it does any good. (By the way, the kind of Vitamin D blood test that is usually ordered show the serum level of calcidiol, which is what the lever kicks out, not calcitriol, the form the body needs for regulatory uses.)

Al