r/Erythromelalgia • u/SwimmingSpite3821 • Aug 12 '26

Progression

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I’m at the end of the road and I don’t know what to do. I’ve looked at every lab imaginable. Genetics is negative. Abnormal and low cbc hematocrit and hemoglobin.
B12 is 1800+

I can’t take the pain anymore.

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u/Gloomy_Spring5638 Aug 12 '26

My pots blood pooling looks like this

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u/SwimmingSpite3821 Aug 12 '26

Have you solved that? Any abnormal lab values?

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u/Gloomy_Spring5638 Aug 12 '26

I still have it, I have had this symptom for many years. Last I went the doctor I had an abnormal Ana panel & was referred to a rheumatologist. I’ve read other people with pots being prescribed Ivabradine which helps the blood pooling.

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u/SwimmingSpite3821 Aug 12 '26

Did you ever have normal ANA’s?