gjensen Posted January 13, 2014 Report Share Posted January 13, 2014 Inability to lay on their sides. Lower arm weakness. Substantial muscle loss in the lower arms and legs. Constant burning sensation centered directly over the heart. Muscle twitching. Occasionally intense, and painful. Sleep transition problems. Piece by piece I am coming to understand this, but these are some things I have not come to grips with, and I have not got any explanations from the doctor(s). I also would like to hear if anyone has tried Butchers Broom. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 13, 2014 Report Share Posted January 13, 2014 I don't have it although I did research them at one point, but have you researched or been tested for any of the myositises? There are basic tests but also some specific autoantibody tests for this. And, I haven't used butcher's broom but I know there have been posts onit in the past so you might find info if you do a ssearch. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 14, 2014 Report Share Posted January 14, 2014 I get the muscle twitches and used to get the burning over my heart really bad and that started after beta blocker use and stopped after I discontinued use. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 14, 2014 Author Report Share Posted January 14, 2014 Rosey, what kind of muscle twitches do you get? I was getting mild one periodically all over he place. Now they are pretty intense, and dominate on the right side. Some are even painful and where I get one the most, it hurts even when it is not twitching. Katy, I looked up Myositisis this evening after your response. I do not seam to fit it, but I have been so wrong about so much. I will look into understanding it more. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 14, 2014 Report Share Posted January 14, 2014 some of these could be POTS symptoms. do you have any other conditions? are yout taking any medications? (could be side effects) Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 14, 2014 Author Report Share Posted January 14, 2014 No other conditions.Only taking clonidine to keep the surges at bay while I figure this out.I have been experimenting with Licorice. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 14, 2014 Report Share Posted January 14, 2014 Mine will sometimes be just one arm or leg or be a whole body jerk and seems to particularly happen when I'm trying to relax and fall asleep at night and they usually don't hurt. What I get that hurts is just sudden sharp shooting pains in chest and head that last a few seconds. As far as the chest burning do you take a beta blocker? That's what was causing mine. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 14, 2014 Author Report Share Posted January 14, 2014 Mine will sometimes be just one arm or leg or be a whole body jerk and seems to particularly happen when I'm trying to relax and fall asleep at night and they usually don't hurt. What I get that hurts is just sudden sharp shooting pains in chest and head that last a few seconds. As far as the chest burning do you take a beta blocker? That's what was causing mine.I did not have good luck with the beta blocker I tried. Bystolic. I had a hard time breathing. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 14, 2014 Author Report Share Posted January 14, 2014 These are some thoughts that I have on the different symptoms. Inability to lay on the side. I have no clue what is happening, but I start having trouble breathing and get palpitations. Also get dizzy and sickly. I have woke up in this position feeling like I was having a heart attack.Lower arm weakness. Seams to be more of a sensation than actual weakness short term. Long term it does not take much effort to get them very weak. Maybe the muscle loss is deconditioning, but I do not like how it is progressing and the manner in which it is progressing. The burning sensation has been around before the Clonidine. I think it is vascular.I think the muscle twitching exclusively on the right side is interesting. How intense it can be and painful is interesting. These signals are coming from the brain, but why? I wonder if his is related to blood flow problems. I think the sleep transition problem is from the brain to. Why?I guess what I need to do is figure out improving blood flow to the brain and see what is left. Quote Link to comment Share on other sites More sharing options...
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