Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi everyone, I posted for a while a few months ago when I was first diagnosed, but recently I've gotten incredibly busy with work and the kids and so have been keeping up by reading the email posts. You've all been in my thoughts! Lately I've had terrible pain in my legs. It's especially bad at night when I'm trying to fall asleep or when I'm otherwise not moving (like driving). I don't think it's " restless leg syndrom " because it doesn't feel itchy, though moving my legs or massaging them does seem to make it better. It feels more like my legs are sore as if I've been exercising (which I haven't!). I had this kind of thing twice in the past - once about eight years ago, when I was first diagnosed with UC and was also having liver problems (enzymes off the charts), though I wasn't diagnosed with PSC at the time. I think it went away once they gave me all the meds for the UC - like prednisone, Imuran, Pentasa, Cypro (they really loaded me up then). The second time I had it was recently when I started taking Asacol (I was only on Imuran at the time, now I'm on both). It was a side effect that eventually went away. The thing is that I've been on Asacol for about 7 months now and actually I ran out so I haven't been taking it for a couple of days, which is exactly when it's gotten worse. I probably have been doing a little more walking than usual in the last few days (taking stairs and such in an effort to be healthy), but nothing extreme. Do you all have experience with this kind of pain? Is it a sign of some kind of vitamin deficiency or UC inflamation or can it be PSC- related? Is it a separate issue? Could it be restless leg after all? I'm so disturbed because I can't sleep! Thanks, Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 For me they have figured out through bloodwork that when my legs feel like that my potassium is low. So if I drink a large glass of orange juice, my legs feel better. PSC 5/06 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 For me they have figured out through bloodwork that when my legs feel like that my potassium is low. So if I drink a large glass of orange juice, my legs feel better. PSC 5/06 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 For me they have figured out through bloodwork that when my legs feel like that my potassium is low. So if I drink a large glass of orange juice, my legs feel better. PSC 5/06 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 >Do you all have experience with this kind of pain? Is it a sign of >some kind of vitamin deficiency or UC inflamation or can it be PSC->related? Is it a separate issue? Could it be restless leg after all? >I'm so disturbed because I can't sleep! From time to time this item comes up. Sometimes I throw this answer out only because it worked for me. Others it may vary. Before I got my transplant I would wake up at nite sometimes with leg cramps others with jumpy legs .... either one I could not get to sleep or back to sleep I read someplace that if you put an open bar of hand soap in the bed with you close to the bottom of the bed or near the feet, it will go away. Sounds and old wives tail but it worked for me..... Bill Boothsunny Sundridge, ON Visit my weather WebCam at http://www.almaguin.com/wxcurrent/weather.html Organ and Tissue Donation - The Gift of Life Talk to your family. Your decision can make a difference. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 >Do you all have experience with this kind of pain? Is it a sign of >some kind of vitamin deficiency or UC inflamation or can it be PSC->related? Is it a separate issue? Could it be restless leg after all? >I'm so disturbed because I can't sleep! From time to time this item comes up. Sometimes I throw this answer out only because it worked for me. Others it may vary. Before I got my transplant I would wake up at nite sometimes with leg cramps others with jumpy legs .... either one I could not get to sleep or back to sleep I read someplace that if you put an open bar of hand soap in the bed with you close to the bottom of the bed or near the feet, it will go away. Sounds and old wives tail but it worked for me..... Bill Boothsunny Sundridge, ON Visit my weather WebCam at http://www.almaguin.com/wxcurrent/weather.html Organ and Tissue Donation - The Gift of Life Talk to your family. Your decision can make a difference. Quote Link to comment Share on other sites More sharing options...
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