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Boy have I missed you all!! My husband and I have moved into this dinky apartment and had no room for a computer. He insisted that I need to be back in the support group so we finally found room. We had to leave Columbus and move near my family due to my illness.

The POTS is no better. I've been on everything and no luck so far. In August I got a blood clot in my leg. I was in the hospital for 8 days. My leg is still huge. They say that the swelling may never go away. It's been a horrible summer. I finally got in to see Dr. Grubb. Wow what great guy. He spent 4 hours with us. So now I see him and Dr. Stillman (cleveland Clinic). I guess you can't go wrong with two great doctors. I'm in the midst of filing for Social Security Disability.....sure soounds like it's going to be a long haul.

Here's a question does anyone else have this problem...?

Sometimes my hands feel like they are on fire. Everyday I have to put an ice pack on them. It's really uncomfortable.

Well anyways.... I missed you all


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Dear Mindy,

I seem to be the other way, too cold and painfull. Are they stiff too? I heat mine. Have you tried any rubs, like capsasian, menthal, tea tree oils, etc. ? I make my own of a combo of all of the above and add aloe vera and udder balm, I also use it on my feet.


PS Nice to meet you but I must have started after you left.

Name is Jennifer, I'm 33, dx'd with POTS, Fibro/CFS. Mother of 2.

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Welcome back Mindy :)

I don't get the symptom you mention, but wanted to ask:

did you tell your doctor about your burning hands? That burning can sometimes be a symptom of a rheumetologic disorder called Raynauds. Could probably be other things too, but be sure to tell your doctor.


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I saw my cardiologist last week. I explained all my problems including the one you are mentioning. My hands and feet die, or pins and needles but the worst it the red burning sensation. It is very painful and irritating when all these things happen. My doctor says it is due to my veins not working normally. It is getting worst and I find I can’t sit in certain possessions anymore. I don’t have any tips on what works but I normally kick off my shoes when my feet get bad. The cold sensation of the floor is wonderful. I exercise my fingers when they start playing up. Do you every wake up with parts of your body dead? I often wake up and a certain part is dead. It takes a while for it to come back to normal. I had an operation recently and it took my legs 1 1/2 weeks to get back to normal. They were dead the whole time.

Good luck, this is just one of our many problems. :)

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