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Posted

It could be many things, but one suggestion how are your vitamin levels? My vitamin d levels were really low and I had tons of pain all over. I got the levels up and still had pots issues but the pain of the body seemed better. I was taken off those high doses and have a feeling my d levels are low again, I am having a bunch of strange pains, in leg, foot, arms, neck, etc... I also am late on my vitamin b12 shot.

Just a suggestion.

Posted

I wish I had answers for you. There are people on this site that seem to have a lot of knowledge on this disorder. I am still in the searching and learning process. Maybe its neuorpathy? I know I spelled that wrong, but thats a possible?

Posted

I get this too. I really believe it has to do with dysautonomia. Your ANS regulates bloodflow. I think it sometimes doesn't get to the muscles and you get an achy feeling. This is just my guess though. I have found that massage helps.

Just know you are not alone with this. Hope you feel better.

Posted

Badhbt, I think I will try massaging my leg and foot. My left leg has been really hurting me. It actually seems like it is causing some POTS symptoms. I stupidly tried to do some steps last week and ever since then it has been bothering me. I try not to freak out about it, but it hurts off and on and I get nauseous and tachy with it. Its odd, any bending of it sets it off. lLke today, I was sitting on the floor organizing my daughters closet and started to feel bad after a while and when I got up the leg started throbbing and then the pots stuff came. But if I just walk its okay, but any bending of it and its pain there and the pots stuff. And most of the day I feel like body is running on high. Maybe it is the bloodflow. I keep freaking out thinking there is something wrong with a artery in my knee. I know that sound stupid, but all of this stuff started around the time, I slammed my knee in my jeep. I didn't put that together til recently.

Achilles2323 -sorry didn't mean to ask questions on your post, just interested in the answers you get too. Do your muscles ache all the time or at certain times?

Posted

Have you been on any new medications or higher doses recently? If so it could be a side effect. Sometimes a problem that seems totally unrelated to a medication is actually a side effect.

Posted

When they did all your blood work, did they do all of the tests to rule out the different types of myositis? Are you getting weakness along with the sensations? You can Google polymyositis and dermatomyositis for information.

Posted

I think maybe just starting with your GP at first. Letting them know what's going on and maybe they can point you in the right direction. I know that sound a little laughable..... the thought of a doc being able to point someone with POTS in the right direction, (:) ) but it's worth a try.

As far as your symptoms, I have had something similar to what you describe but it just hasn't lasted as long as yours has. I do often get a burning sensation on my skin.

Good luck in your search and I a so very sorry you are going through this!

Posted

I agree with boymommy3 also. See your GP and let him know how you are feeling. My son has the burning sensation from time to time. Might try a warm bath in epson salt, if you can tolerate it. If it helps, you might need to get magnesium levels checked. Hope you feel better soon. This burning sensation can be caused by many different things.

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