Why it took me so long to be dx'd

I started a thread a while back and asked about dependency being an issue because that is one of my most “noticeable” symptom.

I do not have the red feet that I see pictures of all over the internet. My red feet are on the bottom of my soles and toes and sometimes the tops. I have seen my feet get red up to my ankles though when standing outside in the heat of summer. I really didn’t think I had flares because my feet always burn. So I doubted myself and really if you have any doubt, the doctors will not help you. I didn’t feel like I was having flares…my feet burn constantly at this point and my toes turn puffy.

I finally stumbled onto this article:

Back in 1899 Sir Thomas Barlow had already summarized with great detail the contrast between Erythromelalgia and Raynaud’s disease as ollowing: Dependence produces considerable increase of the dusky red or violaceous tint of the extremity affected; the arteries in this position of the limb may pulsate forcibly ; pain is common, sometimes constant, and more especially when the limb is dependent or parts pressed upon ; in wintry weather, or on the application of cold, the conditions are relieved ; on the other hand, warmth and summer weather increases pain ; there is no loss of sensation, but there may be increased sensitiveness

Also I read this but the citation notation was missing:
Erythromelalgia is a difficult condition to diagnose as there are no specific tests available.
However, reduced capillary density has been observed microscopically during
flaring;[38] and reduced capillary perfusion is noted in the
patient. Another test that can be done is to have the patient elevate their
legs, and note the reversal (from red to pale) in skin color.

So I took a picture of my feet, hopefully you can see it , raising one foot up and then putting it back down.

My feet burn really bad in the summer so sadly I was trying to get a diagnosis in the winter. But that picture caught everyone’s attention. I was sent to a Rheumy and she just sent me for bloodwork however she wrote on my chart Erythromelalgia! Long ago I was dx’d with Lupus but they say I have it mildly so Rheumy’s normally don’t give me the time of day.

I know I have Erythromelalgia and thankfully I had a Pain Mgmt doctor that listened to me. I am scheduled in April to see an Erythromelalgia knowledgeable doctor in Indianapolis. My feet started hurting when I was 40, I am now 60, so I have suffered for 20 years.

I just wanted to share my story. Hopefully you can read it…hard to tell if it’s formatted correctly in this small space.


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Thank you for sharing your story and interesting article. I know what you mean about winter Hospital appointments when feet are not flaring, hard to be taken seriously when ones feet are purple when not flaring as in my case. Has your EM symptoms progressed over the years to other areas. Good luck with your appointment in April

No Marti…no it hasn’t spread. I always knew something was wrong with my hands though. I rinsed them a lot to cool them off but thankfully I didn’t have to stand on them or wear gloves. lol

OMG! I swear those are my feet!!!

Well take them back Gardengirl!!! lol just kidding…I wish we got notice of replies.

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Hey Hayley! You should get automatic notifications of replies, they appear in the top right hand corner on the round circle we call your ‘avatar.’ At the bottom of this thread, you can also click the button that says Normal and change it to watching:

Hope this helps!

Hi hayley3,
Thank you for sharing your story. I had a difficult time convincing my MD of my feet flaring as well. They would be stubbornly flare free each time I went. Since then I started taking pictures of my most notable/weird flares and I brought them to her just this week. She has one other patient with EM as well. When she saw the pics (and my actual feet, as they were in full flare for this visit), she gave me the EM diagnosis. Let’s hope we each find the ‘cure’ that works for us and provides us with relief :heart: