Anyone have Erythromelalgia? (burning purple toes)

I had ITP in 1984 at age 23, and back then, if the prednisone didn't work, they took out your spleen. Went on to live my life and have had no major health problems for all these years. I am careful to keep up on my vaccines, have had a child and work around children (and in a hospital environment) and have never felt "fragile".

The only odd thing is that I was recently diagnosed with erythromelalgia (related to Raynaud's), where my toes get purple, hot and painful. I have been told that they don't understand it well, but that they think it's related to either whatever caused the ITP itself, or the lack of spleen. My platelet counts have been normal for 25 years, but docs have told me that the platelets may be "sticky" and causing the engorgement in my toes.

Anyone else out there either have the symptoms or have been diagnosed with erythromelalgia?
www.erythromelalgia.org/

Never heard of it until you mentioned it. I was diagnosed in 1989, at that time it was prednisone or splenectomy too - I elected to keep my spleen.

New platelets are sticky - with ITP platelets are destroyed so the body is making a lot of new ones. Someone will correct me if I'm wrong but that is my understanding.

You had your spleen removed & your counts were normal for 25 years, is your count in the normal range still? How do the docs know your platelets are sticky?

I found this brochure at the site you mentioned most interesting:
www.erythromelalgia.org/LinkClick.aspx?fileticket=_w3jIviqPIs%3d&tabid=95

Take care and keep us posted!