Living with a disabling condition

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I started getting stange burning in my feet and calves about a year ago.  Went to many doctors and had all the test.  None could diagnose me.  Said probably samll fiber neuropathy even thought the skin biopsy was negagive.  Stumbled across the Living with Erythromelalgia website and determined this is what I must have.  Brought pictures to my neurologist and he finally agreed it was Erythromelalgia.  The burning is mostly in my feet around the toes and balls of my feet.  Cannot go out in very hot weather.  During the summer I only went out in the early morning and at night.  Had to stay in the air conditoner.  I carry a little cooler with a gel ice pack evverywhere I go.  I take gabapentin 300mg 3x a day and nortrityline 10 at night.  These meds have helped about 60 to 70 percent most days.  Now that I know my triggers I have less flaring.  I do have some bad days but trying to stay positive.