Erythromelalgia and Myeloproliferative disorders

Posted by hotfooted @hotfooted, Jun 2, 2019

I was just searching for answers and now have a lot more questions in regard to erythromelalgia... Hope some of you folks can give me your thoughts on any connection between EM and myeloproliferative disorders...

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Ethan McConkey, Moderator | @ethanmcconkey | Jun 2, 2019

Hi @hotfooted that must be frustrating finding more questions that answers while researching.

I wanted to share this study I found involving these two conditions you mentioned, hopefully it is not one you have already read: https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/611001

I also wanted to tag fellow Connect members @emfm4me @babyur4me as they have experience with erythromelalgia and also wanted to tag @simple27 as she has mentioned a myeloproliferative disorder in the past and they may be able to offer you support.

What are some of the questions you have that have arisen from your searching?

hotfooted | @hotfooted | Jun 3, 2019

Thank you, Ethan... I'm just beginning to look into this area for myself.. going so slow because I am afraid of looking for trouble... My anxiety (tummy pain) increases when I delve into some of the info.. Since I'm already a mature lady maybe I won't have to deal with much of it.. Ignorance can be bliss, sometimes.. smile...

Teresa, Volunteer Mentor | @hopeful33250 | Jun 4, 2019

Hello @hotfooted and @ethanmcconkey

I'm glad that you brought up this topic. I had never heard of it before, however, when I looked at the link that Ethan provided I found some of the information vaguely familiar to symptoms that I have experienced and which some doctors have just shrugged their shoulders about. On occasion, the top of my hands will feel very warm and painful (especially when exiting the shower), the only way to get relief is to hold my hands up in the air with my elbows bent. This relieves the pain. It always struck me as an unusual symptom.

@hotfooted, if you are comfortable sharing more, could you tell me if you experience symptoms related to these disorders? If so, I'd be interested in knowing more about them. Please share only as you are comfortable doing so.

hotfooted | @hotfooted | Jun 16, 2019

In reply to @hopeful33250 "Hello @hotfooted and @ethanmcconkey I'm glad that you brought up this topic. I had never heard..." + (show)

Hi Teresa.. I haven't had any thing like you describe, as my problem is mainly in my feet.. Wish I could offer some suggestions or thoughts about your symptoms though.. Altho they do remind me of another's symptoms on Connect.. I'll see if I can locate that and send it on to you.. Bless your heart...

John, Volunteer Mentor | @johnbishop | Jun 17, 2019

@hopeful33250 I'm not sure if you've seen these articles but I thought they could possibly describe the pain you have in your hands sometimes.

Warm hands: 9 causes and treatment - Medical News Today
-- https://www.medicalnewstoday.com/articles/321593.php

Warm Hands: Causes, Treatment, and Warning Signs - Healthline
-- https://www.healthline.com/health/warm-hands

Teresa, Volunteer Mentor | @hopeful33250 | Jun 17, 2019

In reply to @johnbishop "@hopeful33250 I'm not sure if you've seen these articles but I thought they could possibly describe..." + (show)

@johnbishop Hi John:

Thanks for passing that on to me. I related to the second article that you sent because it said that elevating the hands would bring relief (it was discussing erythromelalgia) and just this morning I had the feeling of pressure in the top of my hands and elevated them and then they were OK.