leg issues

[vdub]

I really struggled with what to title this thread, because when doing a search on the forum, I noticed that we had a LOT of information buried in hundreds of posts on only a few topic areas. So, it is difficult to search (and find) info on a specific subject.

Anyway, my question is "how does WG affect the legs". The reason I'm asking is because I'm having some issues with the calves of my legs. Actually, I have had these issues for years and always thought it was restless leg syndrome. IBU always fixed me up, but I was doing IBU almost every night.

I'm beginning to think the issue is related to WG, but don't know, so I'm throwing the question out to you guys who have been around the block a couple more times than I have.

The calves of my legs, often, and increasingly more frequent, ache as if the muscle is about to twitch, but never quite makes it. Tensing the calve muscles seems to relieve the pain (ache) momentarily, but it's still there when the muscle is relaxed. On occassion the muscle (leg) will actually twitch, but it's kind of a forced twitch versus an involuntary sudden twitch -- sort of inbetween the two.

Does that sound like a WG issue or something else?

A funny aside, but not to go off-track with the first post on my own thread, but I woke up at 0300 this morning and thought bugs were crawling down my legs. I was sleeping above the covers even tho the a/c has been going 24/7. Anyway, I went to slap the "bugs" and it was beads of sweat rolling down my legs. My shirt was soaked. The inside temp was a pleasant 70, but I was buring up. Darned steroids!
<insert putain>

[pberggren1]

I wish I could help vdub. I don't know if that would be Wegs related or not. I have never had anything like that before except of course the night sweats.

[vdub]

You still down south and on your uncle's gee whiz MAC, Phil? How are things going?

[pberggren1]

Not too bad vdub. Thanks for asking. We might not be home til Sunday but will see what Mom and Dad want to do. I would like to go down to Assiniboia to see Grandma and my friend Dale but I have a feeling that Mom will want to go straight home tomorrow.

[Psyborg]

I kinda get this a bit VDUB, but I'd chalked it up to the Prednisone to be honest. Maybe that's not correct. I wake up at night a lot kicking out with my legs now. Usually when I'm not quite to sleep actually, wakes me back up.

[Sangye]

vdub, the steroids might be upsetting your balance of calcium and magnesium. There are a number of other nutrients that could be the culprit but it can be pretty complicated to figure out which one. Start with calcium and magnesium.

[BrianR]

I am prone to spontaneous leg cramps and muscle spasms so I take calcium & magnesium (combined in one pill and I take 3 pills) every night before bed. It helps. My dose is 900mg calcium with 450mg magnesium (2:1 ratio cal to mag).

Some say it helps one sleep as well.

[vdub]

calcium & magnesium
I'll see if I can get some of this stuff and try it out. I am on steroids (cortef), but as a replacement. I'm not of pred or anything and this issue has been with me for a long time.... well before WG was diagnosed. However, I thought maybe it had been WG trying to wake up 10 years ago.... Such a weird disease.... I'll bet we could blame pregnancy on WG.....

[Dianne]

I've had the same issue with my legs for years and it was attributed to restless leg syndrome. I can always tell when it kicks up - my legs will get that spidery, tingly feeling (mostly during the evening).

[vdub]

So, Diannne, in your estimation, it really is restless leg syndrome and not WG?

[Dianne]

vdub - Just looking back on everything that has happened, I'm thinking it's WG and not restless legs.

[vdub]

And that is why I posted that question/issue.... That's kind of my thinking as well. It would be WG in the true vasculitis sense... But, I haven't seen any damage from it.... I will ask the SLC boyz.... I have a list for them and I'll be seeing them on the 13th -- 2 weeks now....

[marta]

.... Such a weird disease.... I'll bet we could blame pregnancy on WG.....
Ha ha, that explains everything.....:ohmy:

[marta]

I had restless legs before I got Wegs too, and since diagnosis I've had them a few times (each time while taking Benydril, so I attributed it to that, although as scientists say "correlation does not necessitate causation")

[Sangye]

Before I got dx'ed and the Wegs was severely active, my legs would sort of writhe all night long. It was as if they had turned into snakes or something. I know it sounds crazy but there it is. It was one of the early symptoms and returns whenever the Wegs dog is fully awake. I have restless legs on and off these days but it isn't at all the same thing. When it's Wegs, I also can't lay still at night for longer than 2 seconds. I'm serious about that timing. I'll flip to one side then instantly have to move again. All night long.

[vdub]

Yes, that is me. I can't comfortable and I am stretching, twisting, doubling my legs all night long in an effort to get comfortable. It doesn't come. Eventually, it wil go away. With the current round, I think my legs have been bothering me for about 48 hrs. Oddly, I am mostly bothered when at rest. If I am walking around (say a museum) I don't notice it as much -- it's still there, but I just to notice.

[drz]

When reading my Fosomax insert today it stated that muscle cramp can result from low calcium blood levels. I know mine vary from hardly noticed to extremely painful. I was told I had restless legs when I was evaluated for sleep apnea and sometimes they wake me up, just like the cramps. I know there were different meds they recommended. The one I found easiest was drinking quine water at bed time.

[vdub]

I read that about calcium so I went and grabbed my blood tests, which I've been getting every 2 weeks for the past several months. Calcium is spot on where it should be.... Don't know.... Definitely a question for the doc. I have a list of questions -- unfortunately, I'll probably forget the list.....

[Stephanie78]

My husband started having problems with his calves (like he had worked out) it did gradually get worse. He is in the hospital and has been since Tuesday. We were told (by the dr) that it was probably a side affect of the pred) when he came into the hospital he couldn't walk! It ended up being from the WG.

[Sangye]

Stephanie, it's most likely from the pred but to be on the safe side ask them to check for blood clots. They may not realize that Weggies are 23% more likely to get blood clots. I had this happen on day 3 of pulse steroids. That should be completely impossible!

[renidrag]

Ditto to that Sangye, I was having incrdeible cramps and then one night incredible pain in my left leg. It passed, anyway, there was a clot and it was only three and a half months after diagnosis. Pred probably. Check for the clots.
Dale

[Stephanie78]

That makes a lot of sense. When he came in the immediately began giving him shots of heaphren in his stomache. But they said the joint pain (in his knees)
Were due to the inflammation?
Explained it like arthritis.

[renidrag]

Try to go deeper into that one, I am assuming the heaphren is what is called Lovenox which I had in my stomach also. It is a blood thinner, he needs an ultrasound of his legs. I also believe we can have arthritis at the same time as what ever it is called (WG/GPA) but please push for the ultrasound.
Dale

[vdub]

Euphoria! I have had a bad week not being able to sleep even with the ambien. Have no idea why, but I'm blaming on the humidity here in the mid-west that I'm not used to and, of course, the ever present aches and pains. Tonight, I just couldn't take it anymore, so popped an oxycodone about an hour ago. Life is good at the moment. Maybe I'll get some sleep.

[Sangye]

Stephanie, I agree with Dale. You need to find out exactly why they gave him heparin shots (blood thinner) and I think a leg ultrasound is in order. The knee pain is not arthritis but is inflammation secondary to active Wegs. It's probably gone by now because of the high dose steroids he's on.

[Stephanie78]

They did an ultrasound on his legs the first night he came in. They said it was xue to inflammation. Everything seems to be inflammed. They didnt say he had arthritis, they said the pain and joint swelling is due to WG but "comparable" to it.
The heapran was to prevent a blood clot while he was in bed. Or so they said. They said that clots are very common with WG and with him laying in bed constantly that it would give him a higher chance. They gave it to him in his stomache. I asked why they didnt do it thru the IV and honestly I can't remember the reason. There have been so many "Big" words over the past 5 days and a lack of sleep that im impressed I remember as much as I do.
=)

[Sangye]

Okay, that is excellent. They definitely know what they're doing. Whew, I'm really relieved. The Lovenox (heparin) shots cannot be given any other way. They're quite painful and will leave huge bruises on the abdomen. I doubt that he's feeling much pain on pulse steroids, though. LOL

I'm very impressed with how fast you're learning and keeping up, Stephanie. John is really lucky to have you! I hope you can get some sleep.

[alexciasmom]

So my question is. Is it bad to feel like you have rls from your hips down and shoulders to fingers?

[Al]

Before I got dx'ed and the Wegs was severely active, my legs would sort of writhe all night long. It was as if they had turned into snakes or something. I know it sounds crazy but there it is. It was one of the early symptoms and returns whenever the Wegs dog is fully awake. I have restless legs on and off these days but it isn't at all the same thing. When it's Wegs, I also can't lay still at night for longer than 2 seconds. I'm serious about that timing. I'll flip to one side then instantly have to move again. All night long.
Yeah--that is my story too. Both before and after DX. Drives my bed buddies (the wife and the cat) crazy....

Al

[pberggren1]

So my question is. Is it bad to feel like you have rls from your hips down and shoulders to fingers?

Not bad at all. But it can be caused by numerous things, mostly meds. When I had it last year and in 2010 it was caused by an antifungal med called Voraconazole. After I went off the med it went away.

[drz]

Yeah--that is my story too. Both before and after DX. Drives my bed buddies (the wife and the cat) crazy....

Al

I was diagnosed with restless legs syndrome too during a sleep study years ago. Is this another strange thing that might correlate with our fun disease?

[Sangye]

There is nothing new about restless legs and it's not a syndrome or condition. Big Pharma invented it to sell a drug. You can google to find the info about that-- very well-known and even MDs admit it. (Same with "overactive bladder")

If you do have what we used to call "the jimmy legs" try taking some extra magnesium and see if that helps. Vitamin B6 is also a culprit, too. There are other nutritional causes as well.

During a sleep study in which I didn't even sleep, they dx'ed me with restless leg syndrome. I was in severe pain all night and kept moving my legs to try to get comfortable.

When the Wegs dog is highly active, I get an all-over restlessness at night. I literally can't stay in one position for longer than 5 seconds without flipping over. It's crazy. It affects every part of me, not just the legs. With severely active Wegs it becomes sort of a writhing thing. I think that has to do with an excess of the Fire element, which would definitely be happening with active Wegs.

[alexciasmom]

Ok time to go to the vitamin store...

[chrisTIn@]

I didn't see this thread before, but now that I 've read it, I very much recognize the symptoms.
I have also trouble sleeping when the WG/GPA is active...
Can't lay still, and can't get comfortable.
At this time my legs are okay, but maybe I 'll try calcium/magnesium too.

[drz]

I didn't see this thread before, but now that I 've read it, I very much recognize the symptoms.
I have also trouble sleeping when the WG/GPA is active...
Can't lay still, and can't get comfortable.
At this time my legs are okay, but maybe I 'll try calcium/magnesium too.

Be sure to check with your doctor to see if it is OK to take more minerals. Some times we need extra of something, but other times things like kidney damage, kidney stones, etc can mean it might be unhealthy for you to take certain things. Just because something is available without a prescription does not mean it is safe or good for you.

[pberggren1]

Holistic doc is best to go to for vitamin/mineral/herb questions. I highly recommend a good naturopath that is trained in nutrition.

[Al]

Be sure to check with your doctor to see if it is OK to take more minerals. Some times we need extra of something, but other times things like kidney damage, kidney stones, etc can mean it might be unhealthy for you to take certain things. Just because something is available without a prescription does not mean it is safe or good for you.Indeed. Normal folks have a lot of room for error with electrolytes, supplements, and such. Those with low-functioning kidneys have to watch things much more diligently. I'm talking about 1) Sodium, 2) Potassium, 3) Phosphorus, and 4) Magnesium, in particular, but 5) you can't afford to get carried away with calcium either. Plus, many normal foods, like spinach, kale, peanuts, and black tea and green tea, are high in oxcalic acid, which leads to one kind of kidney stone. The trick is moderation, of course. But how much moderation, hmmm...?

Al

[Sangye]

Taking bottle label dosages is not going to harm anyone, no matter what you've got. People get into trouble when they start doing megadoses of nutrients.

[drz]

Taking bottle label dosages is not going to harm anyone, no matter what you've got. People get into trouble when they start doing megadoses of nutrients.

Some people on certain meds are told to avoid certain foods. I would think in their case taking a pill that has the same ingredients in more concentrated form than the food they must avoid could not be good for them and might even be harmful. Wouldn't it? I have kidney damage and was told to avoid any heavy metal supplements as Al noted in his post above.

[Al]

Taking bottle label dosages is not going to harm anyone, no matter what you've got. People get into trouble when they start doing megadoses of nutrients.Yes, Sangye, but two problems: 1) Most supplements and vitamins are pretty lax about a recommended dosage--indeed, for many, there has been no study of how much is too much. This leads to the fact that 2) many people figure that, hey, if two is good, four must be twice as good...right?

That said, there are plenty of supplements and minerals that are more or less unlimited for normal people, but not everyone. Maybe most people wouldn't eat a whole jar of marinara, but if they did, not so much harm. But for kidney patients, it is another story. That is a whole lot of potassium and, usually, sodium. Same with a bag of walnuts or almonds, except with phosphorus and magnesium. How much is too much? The bag doesn't say. You have to do your homework (and ahead of time!).

Al

[Sangye]

Every supplement bottle has a recommended dosage. If people choose to take more than that, it isn't the supplement manufacturer's fault.