Hi everyone,
Does anyone else have symptoms of EM and Raynauds? It seems like my lower legs, feet, and hands are either red from the EM or purple from the Raynauds. It’s very bizarre.
Acrocyanosis (purplish skin) could be indicative of Raynaud’s. However, it could also simply be EM. The pathophysiological mechanism for erythromelalgia is thought to be errant arteriovenous shunting, a type of short circuit where arterial blood bypasses the capillary bed (where the exchange of gases and nutrients occur at the cellular level) causing tissue hypoxia (lack of oxygen). The hypoxia then causes more arterial blood to rush to the area, which follows the same errant short circuit, eventually resulting in erythema (redness and heat) of the skin.
In essence, blood is being errantly shunted to bypass the capillary bed, which deprives tissue of oxygen, which causes more blood to be sent to the area, which also bypasses the capillary bed, worsening the hypoxia, causing more blood to be sent, more blood to be errantly shunted, and over, and over, and over again. Basically creating rushing rivers of warm arterial blood that induce the erythema at the skin, what we otherwise call “a flare”.
Get it?
So, the acrocyanosis you’re seeing isn’t necessarily Raynaud’s. It could just be hypoxia from EM.
The errant short circuit proposed as the pathophysiological mechanism for EM can be seen in the graphic below.
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Just an addition, arteriovenous shunts exist as a thermoregulatory feature to save the body in extreme cold or heat. When the body is overheating, warm arterial blood is shunted towards the skin to lose heat (through conduction, convection, radiation, and evaporation). When the body is freezing, warm arterial blood is shunted away from the distal limbs towards the core of the body to protect the vital internal organs. That’s why people get frostbite of the hands and feet and not of the shoulder or hip. The shunts exist so the body can act quickly in response to sudden temperature changes.
It is hypothesized in erythromelalgia this thermoregulatory feature becomes disordered.
Thanks for the explanation! The purple skin is somewhat new to me (or I have just never paid attention to it). What’s really bothering me recently is every time I go for a fast paced walk the bottom and tops of my feet get burning hot and I have a pins and needles feeling it’s very uncomfortable and depressing since walking/hiking is a huge stress/anxiety reliever for me.
I can certainly understand the frustration of not being able to perform as you’d like. Hopefully you’ll be able to get back to more vigorous walking/hiking. In the meantime, while seeking out a successful treatment approach, you might want to consider alternate forms of cardiovascular exercise to maintain aerobic fitness, such as swimming or the use of a recumbent stationery bike. Strength training is also a good stress reliever and could prove beneficial.
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Gracee06
While EM could account for the symptoms, it is worth getting it checked out. Take pictures. My Raynaud’s developed in my hands a little later than the EM in my feet and lower legs. My Neurologist did an autoimmune workup and a biopsy for small fiber neuropathy. I have autoimmune small fiber neuropathy and have now been diagnosed with a couple of rare autoimmune diseases, one which is life threatening. When my Neurologist said that EM was a “symptom” it made me upset because it is so painful in itself. In the end, he was right and I am glad he took the added steps.
Just curious what type of autoimmune diseases? I understand it could be sjogrens or fabrey disease but not sure what else could cause EM like syndrome?
So far, I have been diagnosed with Relapsing Polychondritis, Dermatomyositis and Mixed Connective Tissue Disease.
I have both. I was diagnosed with Raynaud’s 3 or 4 years before EM. My feet are always either freezing or boiling! I tell people I have bipolar feet 
The Facebook support group I belong to has quite a few with both.
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Yes. I have both. Same description as shelbysmom. My journey with the medical side of this has been so long and soooooo hard. It’s been 15 years since my first chilblains and I’m finally more in control and better able to manage my flares. Really stay in contact with the people on here as you deal with the diagnosis and meds. The med battle and experimental nature made everything really an 8 or 9 year hell for me. Some people on here have way better experiences with meds, so, yeah this site has so much more knowledge than the doctors. 
Much love.
This all led me to become a cyclist. Maybe think about a bike ride. I started on my old cruiser, then got a road bike off Craigslist, then, ya know, it became my addiction passion anti-depressant hobby…you feel me, and now I have a way too $$ bike but I loooove it.
Hello I have exactly the same symptoms as you describe. My face hands feet legs are very red and flamming then on the flip side I my limbs become very purple. I have both; Raynaud’s and EM
People with Raynaud’s first have skin that blanches. The skin turns dramatically white from lack of blood flow. Because Raynaud’s is caused by arterial spasms. Without arterial blood reaching the extremity, cyanosis (the bluish, purplish color) results from low oxygen saturation.
However, the skin first has to blanch. If you just have red or purple skin, that does not fit the clinical definition of Raynaud syndrome.
An example of a hand with Raynaud syndrome:
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Yup, both. Raynauds came first, EM (feet only) many years later. Has only happened a couple of times with one foot freezing experiencing Raynauds while the other is hot with EM.