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View Full Version : Leg Cramps ALL NIGHT LONG



GeorgiaInOhio
08-10-2009, 02:11 AM
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
08-10-2009, 07:20 AM
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
08-10-2009, 07:48 AM
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
08-10-2009, 08:09 AM
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
08-10-2009, 09:43 AM
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
08-10-2009, 10:44 AM
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.

GeorgiaInOhio
08-10-2009, 10:50 AM
Thanks Sangye, I will talk to my family doc tomorrow when I ask her about the B12. Ill let you know what she says. :D

Sangye
08-10-2009, 10:57 AM
That's great-- make sure she knows about the increased incidence of clots with Wegs so she doesn't automatically chalk it up to pred and/or magnesium deficiency. (Which is usually the culprit if clots are ruled out)

GeorgiaInOhio
08-10-2009, 11:11 AM
thanks, I will mention that to her. :D

RCOSSIO
08-10-2009, 11:20 AM
Georgia,

I would not worry too much...at least in the beginning. I experienced cramping similar to what you described and it was due to being on 40mg of Pred. As I tapered of the Pred the cramps have minimized as well. You should still consult with your Rheumy but just my experience as I went through it on higher Pred doses.

sumsum5587
08-10-2009, 01:34 PM
Hi,

I have real bad lag pains too. From my knees down and it moves from one leg to the other. But sometimes my pains are different. Sometimes they are cramps and then sometimes its sharp pains and then sometimes its like there trying to draw up...? The cramps are from my meth. im pretty sure it is anyway... im not sure yet about the drawing up... but the sharp pains is the WG.. Or thats what they told me in the hospital when i first started hurting..... anybody else know??

jola57
08-10-2009, 03:55 PM
I used to get leg cramps but not this bad. I too take B12, with B6 and folic acid. I have not had leg cramps for a while now even when I am streching.:)

Sangye
08-10-2009, 11:33 PM
In addition to leg cramps, I also would get muscle cramps anywhere-- hands, ribcage when twisting, etc.... Even off pred, it's a sign to me that I'm overdoing it.

GeorgiaInOhio
08-11-2009, 12:47 PM
Hi,

I have real bad lag pains too. From my knees down and it moves from one leg to the other. But sometimes my pains are different. Sometimes they are cramps and then sometimes its sharp pains and then sometimes its like there trying to draw up...? The cramps are from my meth. im pretty sure it is anyway... im not sure yet about the drawing up... but the sharp pains is the WG.. Or thats what they told me in the hospital when i first started hurting..... anybody else know??

yes, this is exactly what I get. same thing. its horrible. and you cant stop them! ahhh! it has to be the prednisone. I have to call my doc tomorrow, she wasnt in today, and ask about this B12. Im starting to think more and more it will help as long as im taking the pred. I also started eating more meat- I used to eat alot of meat but for some reason lately its been mostly grains and veggies. That link that doug posted said how you absorb B12 from meat, so i started yesterday having at least a serving of fish AND chicken everyday. Last night I had 3 cramps, but they immediately eased up when i stood up. today ive had some muscle tightness but we'll see what tonight holds. I did have some salmon and chicken again, so if this helps, then I know its the B12. I found some B12 lozenges at the store, ive heard they work better than tablets, so if the doc says it may help Im going to get them. If the meat helps, well ill just eat more meat. I guess Vegans have to take a B12 supplement- I could never be vegan. lol.

so we shall see what tomorrow holds. other than the cramping, i actually had a good feeling day. been in a good mood. had energy. kind of suprised me. foot pain all day of course, but thats normal now. lol.

GeorgiaInOhio
08-11-2009, 12:49 PM
In addition to leg cramps, I also would get muscle cramps anywhere-- hands, ribcage when twisting, etc.... Even off pred, it's a sign to me that I'm overdoing it.


I noticed this as well. Today I shampooed my carpet and half way thru my side was hurting like it did back in the good ol days of gym class when we had to run around the gym like idiots! LOL ah, good times.

jola57
08-11-2009, 01:38 PM
Oi Georgia take care and do not overdo it.

Sangye
08-11-2009, 11:55 PM
I second that, Georgia! It's the pred. It makes you feel you can lift cars.

I was so weak from everything else while I was on it, that I didn't really overdo. I was closer to death than life for at least a year. But I was still aware of the pred's attempts at making me feel like Wonder Woman.

coffeelover
08-12-2009, 11:51 AM
would these cramps be because of lowered pottasioum levels? Maybe eating bananas would help?
I used to get terribleleg cramps, but none since starting the pred and mxt?
Lisa

jola57
08-12-2009, 03:57 PM
My body is like an entity of its own, whenever I need some vitamin or mineral it just craves whatever is rich in the substance. Like now I eat banannas and tamatos like crazy - I never had cravings with any of my pregnancies and here its like I must have it or else:mad:, so i just give in and eat what my body tells me. it is always right.:p

Doug
08-15-2009, 10:12 AM
My body is like an entity of its own, whenever I need some vitamin or mineral it just craves whatever is rich in the substance. Like now I eat banannas and tamatos like crazy - I never had cravings with any of my pregnancies and here its like I must have it or else:mad:, so i just give in and eat what my body tells me. it is always right.:p

I can understand the craving I've had for peanuts, but what do chocolate chip cookies have to do with it? You are right, though. Your body does tend to lead you to the foods it needs. (P.S. the cookies were oat:pmeal chocolate chip cookies....):)

Sangye
08-15-2009, 10:37 AM
You got any left???

Doug
08-15-2009, 11:30 AM
You got any left???

You kidding?! Ha!

jola57
08-16-2009, 01:29 AM
With heavy hart must admit that I fell of the wagon and burst thru to 92 kg again. Why does food taste so good?

Jack
08-16-2009, 01:41 AM
Be careful what you wish for!

It is 4:30 here and I am starting to think about what to have for dinner, and dreading it! I know that I must eat, but I am never hungry and nothing appeals to me. The later I leave it, the worse it will get. I also know that eating will be a real struggle and make me feel worse for a while. :(

Never mind. Here goes!.............

jola57
08-16-2009, 01:43 AM
Jack, you must come for a visit and meet my Mom, nobody can resist her food.

Jack
08-16-2009, 02:09 AM
Thanks for the invite! :)
I live about 15 minutes drive from Birmingham Airport - see you in a few hours time.

;)

Cindy M
08-17-2009, 12:34 PM
[QUOTE=Sangye;4573]I second that, Georgia! It's the pred. It makes you feel you can lift cars.

I want that feeling. Maybe then I can get some things done around here.

Sangye
08-17-2009, 12:38 PM
No, no you don't want that feeling! It's an illusion. When Wegs is flared up, you don't really have the strength to do the things pred says you can do, and it completely exhausts the body.

Cindy M
08-17-2009, 12:49 PM
Well I definately need something, maybe a swift kick in the but. I am getting pretty frustrated of feeling sick and tired. Like I said before I keep hoping that tomorrow is better but it never is. Maybe if I accomplished something in a day I would feel like it was a productive day instead of sitting here taking pain killers because of headaches or having trouble seeing clearly because of my eyes. I know I am going on about this but it really is frustrating. I guess I want to feel like my life is worth something instead of going from my bed to the sofa.

Sangye
08-17-2009, 01:14 PM
I understand. I have felt the same way many, many times. Therapy has helped me tremendously. You don't need a swift kick in the butt, you probably do need to stop kicking yourself. I'm working on that one, too!

We're so accomplishment-driven in Western society. We feel like successes if we're doing doing doing, and failures if we can't go go go. But stress is behind all the major killer diseases. So this is your chance in life to find a different way. It's not the way you planned, but some really great things can come out of this.

You might figure out how to relax. Maybe how to meditate. You might become more understanding of others who are limited. You might become more compassionate to yourself and everyone you see. These are things we all need to learn, and we have a golden opportunity to do it.

Instead of thinking you're wasting your day because you're in pain, think that you're nurturing your one and only body, nursing it back to health. During my first few months with Wegs, I could barely ever get out of bed. So one day I decided that my bed was like a battery charger and I was the battery! I didn't resent the time I spent in it after that, because I changed how I saw it.

You're frustrated, for sure. Frustration is really fear. It's natural to be terrified that this is how you'll be the rest of your life. But everything changes. You couldn't hold onto what you had in the past, and this part won't stay the same, either.

Jack
08-17-2009, 05:02 PM
I can sympathise with your position as I'm finding myself doing less work and watching more TV. My diminishing abilities are particularly evident at the moment because I am spending a week on my own while the girls are off to Rhodes for a holiday (I'm not really fit enough to travel abroad). Even small tasks are now becoming dificult - food shopping is a major expedition for me. Vacuuming the house is something I'm building up to and may tackle today. On top of this, one of my rabbits is unwell and I'm feeling the strain of coping.

In order to get by, I have to be kind to myself. I force myself to do things that I know will make me feel better like getting up in the morning and eating, but give myself some leeway with extra naps and putting off doing chores.

Sangye
08-18-2009, 12:00 AM
You have a great attitude, Jack. I know it's more difficult for you when your family is away. I imagine just having others in the house to think about keeps your mind distracted from your own stuff. If I didn't have my dogs and bird, I'd be left with....me. :eek:

Take good care of yourself and take care of the bunny. Everything else-- like cleaning-- is secondary. I mean, if they come home and find you under a layer of dust bunnies, so what? :D

Doug
08-18-2009, 12:03 AM
Dust bunnies from "oh well"...!

firecracker
08-18-2009, 07:50 AM
I had the same issue the whole entire time I was on methotrexate. It started almost immediately when I began taking the methotrexate and prednisone. I am still on the prednisone but they went away when I stopped the methotrexate. A lot of problems stopped when I quit taking it. I am not sure what you are taking for wegeners but if its the methotrexate, then its probably what is causing your "leg cramps". i would constantly have to stretch my whole body. when i tried to sleep, my legs actually ached so bad it was almost unbearable. I would just keep stretching them over and over. I asked the doc if it was that medication and he said no. He was wrong.

Gary
08-20-2009, 02:12 AM
I agree, the methotrexate is terrible for leg cramps, wish there was an alternate. I get cramps all night long.

jola57
08-22-2009, 12:45 PM
Don't tell me that, I just started my 6 pills per week regimen 2 weeks ago !!!

Sangye
08-22-2009, 11:35 PM
Jack, how's the bunny feeling?

Jolanta, I haven't heard that about mtx and leg cramps. Maybe it's not that common?

Jack
08-23-2009, 01:34 AM
Thanks for enquiring Sangye, Amber is improving nicely even though she has been quite ill. She had Fly Strike and it was Sunday morning, so no vet available without a 150 call out charge. I decided to treat her myself because I already had antibiotics and anti-inflamatories suitable for rabbits and she was too unwell to stop me cleaning her up. It seemed a bit touch and go for a couple of days, but then she started a slow recovery.

If you don't know what Fly Strike is, you are probably happier leaving it that way!:rolleyes:

Sangye
08-23-2009, 02:59 AM
(Too late, can't stop these Googling fingers....)

Poor bunny. How awful. Glad you knew what to do and got her on the mend.

Luce
08-23-2009, 09:00 AM
Aww poor Amber - one of my biggest fears for Barley is fly strike, not sure I'd be able to treat her at home though.
Is it too early to call you Dr Dolittle?

Glad she's on the mend anyways :)

Jack
08-23-2009, 03:51 PM
My other rabbit had it a couple of years ago, so I knew the treatment and was lucky to already have some suitable medication, otherwise I would have just had to find the money for the vet.
I like to think that I keep good care of them, but they spend the daytime in a run out on the grass (moved from place to place) and where there are bunnies, there is poo and flies! I even treat them with a spray that is supposed to stop it, but perhaps I've been a bit lax. The important thing is to inspect them the moment you think anything may be wrong.


Do you think this thread is going off topic? :o

Sangye
08-23-2009, 11:52 PM
Nah-- we're still talking about poop. That seems about right.

Doug
08-24-2009, 06:05 AM
Nah-- we're still talking about poop. That seems about right.

Out of respect for you, I won't describe any bowels that move today...!:) (Or how much!)

firecracker
08-24-2009, 08:45 AM
Jack, how's the bunny feeling?

Jolanta, I haven't heard that about mtx and leg cramps. Maybe it's not that common?

Im guessing its not that common since when I first got the cramps or more like restless leg syndrome, i called him and he flat out said no way from the meds. Funny though. I stopped the meds and they went away and have not come back since. Then again, I AM one of those people that have the "rare" side effects from meds and side effects that are not even listed. Stopping the meds always makes them go away at least.

jola57
08-24-2009, 02:40 PM
I'm glad its rare so I will not get them but already I am getting pain in my arms, mostly when folding laundry and keeping them up. I can only hope that I'm not slipping backwards. I can't see it as from lowering my pred because that happened almost 2 months ago now and I have been on 15 since then. The only change is the 2 doses of mtx

mikecaven
08-25-2009, 06:36 AM
I had the same problem when my WG was active. My belief is that mine was primarily related to the Prednisone I was on. Once I got off of Pred, the problem went away. I also found that drinking Gatorade helped...but only made it slightly better

coffeelover
08-25-2009, 10:51 AM
I too get occasional leg cramps and I am on MXT. Hmmmmm I always thought it was the pred or my new exercises?

Nice to know.

Lisa

firecracker
08-25-2009, 11:18 AM
I too get occasional leg cramps and I am on MXT. Hmmmmm I always thought it was the pred or my new exercises?

Nice to know.

Lisa

i have been tapering off the prednisone for 6 weeks. tomorrow is supposed to be my last day.. actually.. today. i see my doc tomorrow. I noticed the leg "cramps" went away with the mtx along with that "tired" feeling when holding anything.. at all, folding laundry..etc. like an overly tired wore out, did too much, type feeling. Now that i am almost off the prednisone, I have been a little worse the last few weeks. my legs and actually whole body ache like i have a fever too. i have this weird feeling that the doc will not only want me back on the pred.. but the mtx too. i wont take it. i refuse to. not til i can have fmla again at work which is not until mid november. i cant miss work or i get fired. unless i get too sick .. then i have no choice i guess. blah!:mad: i soooo hate all this crap

jola57
08-25-2009, 12:49 PM
Remember, if you slip back you have to go thru the whole regime from the beginning and for a longer time, it is far better to go off very very slowly and stay ahead of the pain. If you do get sick again you won't be able to go to work at all. So easy does it, the meds should have the time to do their work

Cindy M
08-28-2009, 04:22 PM
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
08-28-2009, 11:20 PM
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. :D

Jack
08-28-2009, 11:59 PM
Interesting how we are all different isn't it?
I used to have muscle cramps - caused by shortage of salt! :rolleyes:
I suppose it is all a matter of getting the balance right.

Sangye
08-29-2009, 12:52 AM
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. :D

GeorgiaInOhio
08-29-2009, 01:41 AM
Wow thats interesting, maybe i can just give you all my salt jack because id be perfectly happy with all of it gone out of my body! :D

and sangye, im taking you with me to the doctor next time, ok? :p

Sangye
08-29-2009, 01:46 AM
Great idea for the next Weggie meeting : a salt exchange!

I wish I could go with a lot of people to their doc appts. Sometimes I hear stories that make me just cringe.