I believe I have the rare condition Erythromelalgia (EM). Symptoms started around age 20, abt 11 yrs ago. Initially experienced tingling in feet, progressed into burning pain. Heat, walking & exercise aggravate it. Bottoms of the feet get extremely hot, blood red in color, slightly swollen w/ severe burning pain. Only immediate relief is cool them off & elevate. It's getting worse & starting in hands (tingling).
After showing my doc a picture he referred me to neuro. Had EMG & nerve conduction study, which were normal. Prescribed Lyrica, had a little good effect, but discountinued b/c side effects.
Based on info presented to my doc about EM, he prescribed amlodipine and amitriptyline. Helps a little & takes the edge off. Sent for ABI and referred to a rheumatologist b/c of worsening. Told rheumy all symptoms, showed pic & that I thought it was EM. He felt on my feet, said this was rare, and I should go to the Mayo Clinic. Also prescribed Neurontin; I have not filled it.
ABI: L calf 172 mmHg, R 143. L ankle 130 R 135 L ABI 1.02 R ABI 1.06. Impression: Significant pressure gradients between upper & lower thighs suggesting possible superficial femoral artery disease bilaterally. Possible questionable signficant pressure gradient between L calf & ankle suggesting possible trifurcation disease on the left. CTA runoff would be helpful to confirm peripheral vascular disease in these locations. Read about vascular disease & don't understand how I fall into it. I do not have high BP, diabetes, high cholesterol and do not smoke. Aside from family history & being overweight (painful to exercise w/ this), how could this be PAD, esp w/ it starting at age 20? Could this be EM? It is the ONLY condition the describes my symptoms exactly. Moved to cooler climate, now feet are always freezing cold & purple. Went to warm climate for Xmas, feet burned like crazy again. Who else should I see abt this? Should I try to get into Mayo? Or get CTA first?
Thank you so much!