Leg Cramps ALL NIGHT LONG

[GeorgiaInOhio]

Ya, so this is a lovely thing. Its happened plenty before, but it seems like the last 3 nights i have had the WORST leg cramps ive had since I got out of the hospital. I dont know if im just overdoing it, or if im eating something wrong. I did have ice cream a couple times, and havent had much sugar, so Im kind of hoping i can blame it on that- but im hoping this isnt a flare up. today isnt SO bad, but all night long I was out of bed, horrible cramps, nothing stopped them, I just had to wait it out. I think its actually more of my nerves than my actual muscles, but everything seems to go together and I cant really tell anymore. I cant find an actual "cramped" muscle, just soar spots, and the pain will go up and down my legs, mostly in my feet to my knees. Theyll even switch legs off and on. Does anyone have any idea if this is off the wall, or just a regular thing that happens, or is it the sugar, too much walking during the day? anything will help me. Sorry, im still learning all this and I just want to get it under control. I cant sit in bed all day, and it doesnt feel like im doing too much, but if i spend one more night in agony i think i may lose it. lol. i know i dont have too much of a choice, but wow- i even have dreams im doing something like climbing a ladder, then i suddenly get a cramp and freak out im going to fall- just as i fall, i wake up and have a horrible cramp. LOL. it sounds funny, but it keeps happening! its like my dreams are warning me its coming! lol

In another thread people were mentioning B12 for certain things and my friend told me that may also help with my leg pain because it should settle the nerves. is this true? any ideas would be appreciated. Thank you!

[Sangye]

Georgia, can you describe exactly where the pain is in your legs? Calves, inner thighs? Severe cramps in those areas can be signs of blood clots.

[Luce]

My calves used to frequently cramp up at night when I was on higher doses of pred - I'm fairly sure it's a common side effect.
Never found a way to subside it, just rode it out and even now my calves lock up when I'm exercising and threaten to cramp.

[Sangye]

It's definitely common with pred, but clots must be ruled out if the cramps (or an odd crampy feeling) are occurring in the places I listed. I developed uncountable numbers of bilateral leg and lung clots instantly when my Wegs was first diagnosed. Incredibly, I was on 1,000 mg IV pred at the time. With that much anti-inflammatory drug, it's hard to get a clot! Weggies are 23% more likely to have blood clots than non-Weggies.

[GeorgiaInOhio]

well, they go from my ankles, to the sides of my calves, to my knees. sometimes the bottom of my feet, sometimes just my knees. It feels more like just pain right in one area. then it will move up. It goes away and then comes back. I think alot of it is nerve pain. It seems like it happens in the mornings too, when i first put my feet down. They get worse after i stand up to try to walk them out. i think its the blood rushing to my feet- i dont know. it just hurts ALOT. I had one in the bottom of my foot yesterday when I was getting in the car from the grocery store. Took me 8 minutes to work it out so I could even drive! I get those alot when Im walking alot, so I know the bottom of the foot ones are from too much walking. Just the ones at night that I really cant stand anymore. THey can last a few seconds or go on for a good few minutes at a time. I hope its not clots. Thats worried me since I was in the hospital. I guess I thought being able to walk around would prevent them, but I guess thats not true then huh. Wow. I have so much to learn.

[Sangye]

When I got my clots I wasn't bed-bound, and like I said, I was on massive steroids. So my docs were totally stumped. They weren't Wegs docs, and later I learned how prevalent clots are with Weggies, particularly when the Wegs is active.

For whatever bizarre reason, even though my calves went into instant tetany (maximum muscle contraction), a leg ultrasound done right away was negative for clots. They wouldn't unlock and 3 weeks later a CT scan of legs and lungs showed massive clots everywhere.

To be on the safe side, I think you should call your doc and have it checked out. A PCP can handle it if your specialist is too hard to reach. The diagnostic test is just a leg ultrasound.

[Cindy M]

Hi Sangye, I'm a little late with this leg cramp stuff but lately I have been experiencing alot of cramps or muscle spasms. It's usually in might left calf, I have also had it in my right foot and left hand. I also get the occassional cramp in my lower left back when I lay down to go to sleep. I read ahead abit and was wondering if it is because of the preds. It seems like if I move in a little different way even slightly I end up with a cramp.

[GeorgiaInOhio]

Just to update, my leg cramps have gone away for nearly a week now. I started taking a B12 sublingual, and after 2 weeks, it eased up tremindously. I also noticed that SALT was a huge problem. I have eliminated as much salt as possible, cut WAY back on any processed sugar, and done my best to rid all White Flower. My swelling has went away almost completely, i mean from having a clown shoe sized foot and ankle, to almost normal again, and the pain and cramps are gone. Im still healing some wounds from the big vasculitus flare up, my toes took a beating on that one, and i got some bad soars from it- but other than that, the cramps are gone. i still get stiffness here and there, and if i walk alot, i get cramps in my feet, but the all night long thing, gone. now that im posting about it, theyll probly come back to prove me wrong, but hey. lol. i actually slept thru the night for the first time since ive been out of the hospital for the last 3 nights in a row. i didnt wake up at all. that is miraculous to me. i dont know if its because im getting used to the meds, or if its because of the cramps, because even days i didnt have cramps, id still wake up all night from the prednisone. so i dont know. i think i just got so worn out being up with crampy legs. lol. but i think the reducing salt and everything, on top of the b12 has done wonders.

my doc said my blood work was fine and my b12 was normal, but i started taking the supplement before the tests, so who knows. im not going to stop. lol. so i thought id just let everyone know. salt is a bad, bad thing for me. very bad. i gunea pig myself on these things, and trust me, its bad. so just a bit of advice maybe someone else could try.

[Jack]

Interesting how we are all different isn't it?
I used to have muscle cramps - caused by shortage of salt!
I suppose it is all a matter of getting the balance right.

[Sangye]

Glad your muscle cramps have stopped! At different points of adrenal exhaustion, salt is actually needed to rescusitate (sp?) them. It's usually after a long period of using pred or after you're off it. So it makes sense that Georgia's cramps are eased by reducing salt, and Jack's were eased by increasing it!

If the B12 is helping you, then take it. The bloodwork concerning B12 wouldn't show an abnormality if you have a subclinical deficiency versus an outright clinical deficiency. That's the level of nutrient deficiency most people have, and this is the sticking point between MDs and holistic docs. You can certainly need more B12 long before your blood shows B12-related anemia. Vitamin C is a good example. If we lack it completely we get scurvy. But the road to scurvy is very long, with many signs of deficiency along the way.

Holistic docs who are trained in clinical nutrition read bloodwork differently. We have a narrower range of "normal" values. So by the time you're medically out of range, you're WAY out of holistic range. When MDs roll their eyes at the mention of "subclinical" deficiencies, I ask them "So you believe someone can have a perfect, 100% optimally functioning thyroid (for example) one day and the next day have hypothyroidism?" They get my point after that.