For the last seven months, I've been experiencing what I now believe is erythromelalgia. The burning, itching, and inflammation of my feet, hands, and forearms has stumped my hematologist, rheumatologist, and internist. The inflammation seems to jump around from the top of one foot to the bottom of the other, and the same with my hands.
My internist suggested lidocaine patches and they are providing limited relief.
Some fellow patients with polycythemia vera (PV) report similar issues and guided me to explore erythromelalgia. I guess this would be considered "secondary erythromelalgia."
I'll add a couple of photos and welcome any comments or suggestions.
peace,
Marina
Polycythemia Vera, dx 2009 -- take Hydrea and warfarin
Behcet's Disease, dx 2010 -- take Remicade infusions every 6 weeks
I saw a hematoligist(spelling of these doctors gives me headaches) for what another doctor i had seen thought was p c v. They did a lot of test even up to a bone marrow biopsy which i asked for. He found nothing to suggest p c v and recommended I look to a neuroligist. Thats where I am now with something like 14 test in the next 3 months. The neuroligist diagnosed me with EM but they he wants to do more test which are so many like a skin biopsy. So I suggest seeing a neuroligist and a hematoligist at the same time so they can work togeather. Your feet and hands look a lot like mine but it doesn't mean we have the same EM. I hope you find answers and relief soon.
PV is often the cause of secondary EM. My rheumatologist has talked about sending to a hematologist as some of my lab work is borderline, but at this point I didn't think it waranted another specialist. I have been negative for any major auto immune disorder but they say secondary EM {plus Raynouds] can preceed an auto immune disorder by as much as 55 years.
My EM will sometimes "bounce around" as you described though normally it is my face, feet and hands. Sometimes it may be just a finger, or 1/2 my toes. Being that it involves the sympathetic nervous system I think the slightest thing can give a rather haywire presentation.
I don't know if I am correct, but it seems to me that pirmary EM {genetic} has a more consistant presentation. Those of us with secondary {the vast majority} seem to vary widely in our presentation.
Documentation with photos and videos is the best way to get your doctors to understand. Most of them will be rather bewildered because it is such a rare disorder. This does not mean they are a poor physician, merely they must be educated on the disorder. Some will be much more open minded to this and will appreciate any information you bring them. There is a discussion on here where a Pain Specialist from John Hopkins interviews the physician heading up the research at Yale {it is on the genetic type but very informative}. If you can send the link to your Doctor! It was an excellent discussion by 2 well respected physicians. Sometimes you can't do doctor to doctor..but this will help in your search for help. http://www.paulchristomd.com/the-burning-alive-syndrome/
Your left foot looks like mine although my foot gets much darker red and swells up. Physical exertion or stress causes mine to get worse, so I try and not let anything get me to upset and avoid overheating. Walking on cool surfaces usually makes the feet feel better along with pouring cold water over my feet when they hurt from the pain. Yes, secondary unless it runs in the family. Have you had any injury to the most affected foot?
My symptoms started after I had 3 different surgeries on my foot to remove a neuroma that were not sucessful. hope you find the answers you are looking for and get relief from the pain.
