metoo Posted July 14, 2004 Report Share Posted July 14, 2004 Hello,my dx are POTS,Sjorgen's and Fibro,among others.Here is my problem....for the last week or so I have been waking up several times a night with severe painful burning in my legs.It also happens during the day.I have tried sleeping with a pillow between my legs,on my side,on my back and it still happens.I told my PCP about this,he admits he knows very little about my dx and is just going by the Mayo recommendations,I am the only paitent he has EVER had with POTS...BUT he says this is related to my POTS and changed the subject.He really is a great dr and is trying to help,I just think he is at a loss most of the time.Also,I am currently taking 40 mg Nadolol daily and it is not controlling my HR and BP.For the first month or so it seemed to work but now I am getting several periods thru out the day of rapid heart rate and dizziness.He had talked about increasing my dosage but is hesitant to do so,again he is going strictly by the Mayo recommendations.He is attributing it to the hot weather we are having and wants to wait until fall when it is cooler to see if that helps any before making any changes but we are several months away from that.I do not go out in the heat at all because it makes me sicker.How can it be heat related when I stay inside in air conditioning all day?Has anyone had this type of burning and if so what helps?Any advice on the meds?Any ideas I can discuss with my PCP would help! Thanks,Melanie Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted July 14, 2004 Report Share Posted July 14, 2004 I used to have severe pain down the left side of my entire body going down the outside of my leg which lasted almost 2 years. ( I still have some weakness on that side even now) The only time I would get some relief was from the Neurontin. The acupuncturist told me it was my gallbladder channel that was blocked and I did get occasional relief when she treated me for it. Sorry you have this pain and hope you can find some relief. Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 15, 2004 Report Share Posted July 15, 2004 Hi Melaine,What type of burning do you mean? Is it a nerve type of burning sensation or burning accompanied by heat and possibly redness? I have both, I am asking because for the nerve type of burning, it could be your back, like a disc or something and neurontin might help, but you should get checked out. If it is the other type of burning it is caused by vascular problems and there is not much treatment for it. Is it in your feet as well?Many many Fibro people have this burning pain.Ann Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 15, 2004 Report Share Posted July 15, 2004 Melanie,I forgot to say that there is also something called autonomic neuropathy. It can cause the pain you are talking about. If your doc thinks it is related to POTS, maybe he was talking about this condition. Ann Quote Link to comment Share on other sites More sharing options...
blackwolf Posted July 15, 2004 Report Share Posted July 15, 2004 I guess I have about the same to say. My questions would be,1. Is there any redness. swelling or is it hot to the touch? It could be an infamation of some kind (celluitis or blood vessel inflamation) I've had both.2. Does it seem to be in one line or area, ie. does it seem to be running in a line down your leg or is it just all over? If it is just in a line, it could be a nerve, if it is all over I would bet on Fibro.My only suggestions would be Motin( ibuprophen) if you like, asprin is my best bet. If it seems to run down your leg, I might suggest icing your back right above or on your tailbone.Good luck, Blackwolf Quote Link to comment Share on other sites More sharing options...
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