Hoping for some help and possibly some support

What all started about a year ago on my deployment is now being thought to be erythromelagia. About a year ago I woke up to a burning sensation in my feet while I was deployed overseas. The limited medical care (a nurse practitioner know as a flight doc) thought it might be athletes foot and gave me some anti fungal creams and recommended a diluted bleach water soak. I followed his orders threw all my socks and shoes away and took extra care to keep feet clean, etc. etc. Fast forward to my return in November with no resolve I went to see a dermatologist. The dermatologist ruled out athletes foot/tinea and thought maybe dermatitis since my feet have a blotched spotted red dot appearance to them, but could not explain the constant burning/hot sensation. I then went to see another derm. who also ruled out a skin issue who then referred me to the head of dermatology at penn medicine who then referred me to a neuro. Since then I have seen a infectious disease doctor and podiatrist who both could not diagnosis anything. Ive had every blood test under the sun as well as parasite/stool sampling all negative. Neuro decided to do an EMG which came back normal but started me on lyrica which hasn't really helped. Dermo is convinced its erythromelagia and has been in touch with neuro. I just want some solution. Im a healthy 29 year old male. Was an active runner but have tapered off as sometimes the burning sensation is too much for the gym. Symptoms include blotchy spotted red hands and feet, a constant burning/hot sensation in my feet which seems worse in shoes and socks and with sitting for long periods of time. My neck and face are also noticeably redder than usual as if I have a permanent sunburn and has been like this since I first noticed symptoms. Ive also noticed my toenails are not growing like they used too, still healthy looking just seem slow to grow. Just wondering if you guys think/concur with the specialists that this could be erythromelagia. Dermatologist is recommending efflexor since lyrcia isn't helping. I've attached pictures, though they are a lot redder afterwork when I take my shoes off finally. Seems like they feel better after a shower or soaking them. Sorry for the long post. And thank you in advance. Zach

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Hi Zach!
It sounds like EM and it also sounds as though the medics have checked you pretty thoroughly to rule out other possibilities. It must have been hard having to wear heavy footwear and especially if you were in a hot climate. I’m sure people think “here she goes again” but have you tried aspirin? It helps a lot of people. You will be able to learn a good deal here about the different medications available. The trouble is that what works for one is problematic to another, partly because there can be so many different reasons why we have EM. A doctor once dismissed my tentative question, “Do you think it could be erythromelalgia?” with “erythromelalgia is just a description of a bunch of symptoms not an illness”. He was right with the first bit but wrong with the second as EM can stand on its own or be caused by something else. Either way it is not something to be dismissed lightly.
Please don’t soak your feet in anything. Wet your feet and put a fan on them but don’t leave your feet in water or you risk damaging the skin with disastrous results.
Is there a time of day/night when the burning is worse? Does elevating your feet help?
I know you will find the information and support you need here.
Good luck
Nel

Dear ZachMXaf,

I am so sorry you might have EM. Whilst we can not give you a diagnosis or medical opinion we can share our knowledge with you. And its a lot ;). Hard to tell from your photos - thats often the case with uploading. I suggest you check out the information for new members pinned at top of discussion forum as its going to give you a crash course on EM. Briefly though, EM is usually diagnosed based solely on clinical presentation - e.g. redness, swelling etc. However, many EM sufferers have small nerve neuropathy for which there are couple of neurophysiological tests - thermoregulatory sweat testing, vascular (noninvasive) testing, and nerve testing (electromyography and autonomic reflex screen, including quantitative sudomotor axon reflex test). Also , a small skin biopsy often underpins 'chronic urticaria' or heat allergy. Simple saliva test can screen you for the known genetic mutation NAV 1.7.

Erythromelalgia may occur as a primary or secondary disorder. Blood work may highlight associated underlying conditions - autoimmunity for example or myeloproliferative disorders such as polycythemia vera or thrombocythemia ( most common causes of secondary erythromelalgia), but diagnosis is not as clear cut. Differential diagnoses are common. I remember you mentioned athletes foot in your profile.

Heat, stress, fatigue, exertion are known triggers of EM flares . Are you finding this is the case with you?

You have been offered first line treatments (lyrica, effexor). Treatments are all trial/error. EM is not a one size fits all syndrome. Are you on or able to take Aspirin?

Sadly, the best we can hope for is to try and better manage symptoms and minimise triggers.

Apologies for terrible syntax but my cognitive functioning gone today !

Have attached some photos for you to make comparisons- maybe clearer for you. Plus best article to get you started.

By the way- take photos, keep pain diary, symptom log and print off ' new members 'information to take to your next Dr appointment. Usually we have to educate them ;).

Hope this helps. Any questions please ask

God bless

mads

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Whoops lost the post while I was correcting auto Correct but will try again later. These little samsung tablets make it easier to look at a screen but they can be difficult when it comes to writing anything.

Blue