I have been having increased nightly cramps in my legs some very severe. Also, especially when gripping things like a steering wheel and even my tooth brush at times my hands get cramped up. Emailed my hepatologist over the weekend and he says this is common in patients with liver disease.
I would be interested in hearing from others in the group that may have experienced these symptoms and any solutions that you found to be helpful in getting rid of them. My doctor told me they used to prescribe Quinine but evidently that is not available to be dispensed anymore but he stated it can be found in smaller amounts in tonic water.
Look forward to hearing your experiences with this problem.
Mark
Mark, I have not yet had this problem with psc.
When I had UC, I had cramps quite a few times, leading me to believe I was more dehydrated than I had thought.
Having a cramp while driving would be scary.
I hope you are staying very hydrated, and eating a lot of bananas.
Jeff
Doctor prescribed Flexerol (not sure what the Rx name is). Works, but puts you “down” like a heavy sedative.
Thanks for the reply LillyAnne. I opted to purchase some "Tonic Water" with Quinine in it. I'm going to try it tonight before going to bed. I understand it will taste nasty but if it gets rid of the cramps it's worth. By the way, my mother told me that when she doesn't have any Tonic water on hand she will take a tablespoon of mustard. I just don't think I could stomach that one though.
No problem - ironically, horrific cramps is what brought my PSC man to the doctor in the first place. Not inconvenient cramps, wake-up-at-3am-screaming cramps, neighbors thought we had a domestic several times over. We tried avacado (more potassium than bannanas), Ivory soap at the foot of the bed (yes, that was literally doctor's orders), yoga, heating pads, herbal supplements, electrolites, and massage. Moderation of strenuous exercise helps (he trains for major sporting events) but when those suckers hit, it's all hands on deck. I'm not sure if it has anything to do with the PSC or not but Flexerol knocks those puppies out 9 times out of 10.
Stephen,
Thanks for the reply. Regarding the tonic water that really seemed to help. Not completely perfect but it gave me longer time in bed without an issue and really I haven't had to jump out and walk it off for several nights now. I think it's trying to figure out how much of that nasty tasting stuff I have to drink. By the way, I'm starting to get used to the taste now but at first it really has a bite. I buy the Wal-Mart brand and it needs to say on the bottle "Contains Quinine". That's the key!
I do have a weakness for Mountain Dew so that may be a contributing factor to dehydration. I have cut back quite a bit though.
Thanks again.
Hang in there Stephen. I know I have battles with terrible nausea at times at the smell of different foods my wife prepares. It's not her cooking just this disease. I have found burning candles has helped, but it has to be even the right smell there.