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View Full Version : Cramps - not like ordinary cramps



Carol
01-08-2009, 10:45 AM
Does anyone else get cramps - they are not really painful just a drawing up of the muscles which I then have to stretch out. Somewhere I read that magnesium was needed to counter the drop in Potassium. I remember the first time I had IV cyclophosamide they tested my potassium and said it needed a potassium drink but this hasn't been tested on subsequest occasions. Can anyone give me advice?
Regards Carol

Sangye
01-08-2009, 11:08 AM
I've gotten them quite severely and no one's given me a good answer. I got them a lot of pred. Sometimes they were just awful muscle cramps, sometimes many muscles at once, and sometimes a kind of contracture. Like a cramp in a tendon. I have to actually pull the area straight to undo it. Very painful and the whole tendon becomes hardened while it's happening. They're happening again lately and I'm not on pred.

crackers
01-08-2009, 11:53 AM
i've suffered badly at times with cramp.i've had it everywhere neck,chest, legs,feet. i seem to have periods when it is every day then it just stops.i am on pred but the attacks don't seem related to any change in meds.never taken any meds for it just suffer in silence.
john.

Sangye
01-08-2009, 11:57 AM
Sometimes I just step back from all our lists and think, "Aren't we just so strange?" No one seems to know what the heck is going on with us half the time!

andrew
01-08-2009, 12:03 PM
Sometimes I just step back from all our lists and think, "Aren't we just so strange?" No one seems to know what the heck is going on with us half the time!

That's what makes us so darned interesting :D:D:D

I get horrible muscle pain in my shoulders sometimes. It's a similar pain to dislocating the socket. Sometimes it can make me almost pass out. Some foot cramps as well but they are easy to deal with. I think the issues with the shoulders come from the Pred but I can't remember where I read that (if I'm not dreaming it).

Awells
01-11-2009, 10:58 PM
Cramps....I'm glad I saw this....I thought it was just me. This is one of my indicators to go home on the 2 days a week I go into the office. Mine usually starts with my pointer toe...well the toe next to my big toe...you know what I mean...it cramps right up tight....once it starts others follow suit....so when that one starts I start packing up my laptop.

-Adam.

hotnorm
01-17-2009, 02:23 PM
leg cramps arm cramps i've had them while on the first 2 months of meds but they subsided slowly after that , i did plenty of walking every day i started with baby steps and walked further the next day and so on, i think a little bit of exercise is a good way of getting back on track , but don't overdo it just follow your common sense

Carol
03-26-2009, 03:48 PM
I decided to try magnesium supplements for my cramps and I'm sure they've helped. Last visit to rheumy he told me that as well as Fosamax(AA) he wanted me to take a calcium tablet each day.The Caltrate I chose has magnesium added to it so I don't take the specific magnesium supplement anymore. He thought the magnesium is OK for Weggies.
regards
Carol

Sangye
03-27-2009, 12:43 AM
I'm sure you already know all this, but just in case : Don't take magnesium near your other oral meds-- either blocks them or absorbs them. Magnesium is a natural relaxant, so it's great to take at bedtime. Too much can cause diarrhea.

Doug
03-27-2009, 12:46 AM
I decided to try magnesium supplements for my cramps and I'm sure they've helped. Last visit to rheumy he told me that as well as Fosamax(AA) he wanted me to take a calcium tablet each day.The Caltrate I chose has magnesium added to it so I don't take the specific magnesium supplement anymore. He thought the magnesium is OK for Weggies.
regards
Carol
I'll pass that by my doctor. Even though I'm off most medications now, certainly those most implicated ones in this cramp business, I still get miserable, long lasting ones. Mostly they are in my feet and calves, now. I can stand (slowly!) on the afflicted side and work it out, but I used to have deep muscle ones in my thighs that almost made me pass out! I used to have hand cramps that were nearly that intense, but I could work them out with the opposite hand. I always forgot to bring these up with my doctor, though I did hit the Internet. Carol's doctor pretty much follows what I understood to help them. :(

andrew
03-27-2009, 07:02 AM
I always forgot to bring these up with my doctor,

Heh, yeah it's like going to the dentist. The toothache stops when you walk in the door. I constantly miss stuff to tell the doc too. I'd write them down between visits if I had any hope of being organised enough to do so! :D <-- does that make sense?

Doug
03-27-2009, 07:51 AM
When I was in hospital during the initial treatment for WG, I had a little notebook in which I wrote everything I wanted to tell my doctors when they came by. It was a wonderful tool that would have been better had it not been during my worst Prednisone times: i.e. the phase where I thought I could speak Dutch, which I've never spoken, and a few other things one doesn't discuss with even the closest of Weggie friends! Ultimately, once I had better command, I christened it my "Crazy Book" because, well, anything I wrote in it tended to be in that vein. Later, when I bought a fresh notebook (I wouldn't like to forget "Crazy Book" anywhere- I live in a small town!) , I forgot it as often as I forgot what I wanted to tell my doctor.

Doug
03-27-2009, 04:54 PM
For any Weggie facing the torture of numerous failed attempts at getting blood samples because of WG damage to your veins, ask your doctor if a Greshong line is suitable for you. It is a high maintenance item because you have to deal with insertion site infections and blood clot issues, but any adult, with reasonable care, can live for months with one of these and avoid the discomfort of needles! They can be used for anything from taking blood to giving you IVs and transfusions (I've experienced them all). I've attached some information. I note I don't work for any medical supply company, my doctor didn't put me up to this so he could get a kick back from his catheter salesman: this technology saves you pain and discomfort well beyond the inconvenience of weekly trips to have maintenance performed on them. Note that you will have a 25cm (approx.- I forget exactly how long it was) plastic tube sticking out of your chest as long as you have it, but you can tape it down.

Groshong LineBitmap Wikipedia.orgA Groshong line is a type of tunneled intravenous catheter used for central venous access. Groshongs may be left in place for extended periods and are used when long-term intravenous therapy is needed, such as for chemotherapy. Similar to the Hickman line, the tip of the catheter is in the superior vena cava, and the catheter is tunneled under the skin to an incision on the chest wall, where the distal end of the catheter exits the body. In contrast to the Hickman line, the tip of the Groshong line has a three-way valve which allows infusion as well as blood aspiration while reducing the risk of clotting, air embolism and blood reflux.The insertion of a central Groshong line is usually done under local anesthetic by a radiologist or surgeon. It involves two incisions, one at the jugular vein and one on the chest wall. At the former, a catheter is inserted into the vein and advanced into the superior vena cava. It is then tunneled under the skin to the second incision. The first one is then sutured. Throughout the procedure, ultrasound and X-rays are used to ascertain the positioning of the catheter. Groshong catheters come in PICC line variations as well.The Groshong catheter is a trademark of Bard Access Systems.

coffeelover
04-27-2009, 06:12 AM
I am glad I started looking around the various threads and found this one. I have been recently suffering from cramping in my hands and feet. It comes and goes, but seems to be more prominant now than it was when I was first on medicines. I did start taking magnesium and calcium in the mid afternoon. Far from ALL my other drugs that I take. Any other advice out there for me?
My symptoms are uncontrolled muscle movement in my pinky area of my right hand and sometimes the left and/or terrible pain in my feet with that cramping feeling.
Thx in advance for your advice.
Lisa

Jack
04-27-2009, 11:40 PM
I had the same problem with my left hand curling into a claw! I was told at the time that it may be due to lack of salt or water (I don't tend to intake much of either). It went away after a few days, so I'm not sure what cured it.

coffeelover
04-28-2009, 07:15 AM
Thanks Jack. I have been having the curling claw hand two or three times a week for a short time frame. I do alot of computer work at work and I play guitar and piano, so that carpel tunnel could be somewhat of an issue. I have had carpel tunnel surgery in my left hand and the hand most affected now is the right....so could be....or I could have something else. I give up.
Lisa

KtheC
04-28-2009, 07:30 PM
no cramps, never had them