Have been told by several Doctors at the VA that I have erythromelalgia and some have said scleroderma. I looked up both and find there seems to be a connection one to the other. Has anyone heard of this connection? Thank you…
Hey John,
Welcome to Ben’s Friends.
My name is Merl from the modsupport team here on Ben’s Friends. Although I have not been diagnosed with either erythromelalgia nor scleroderma, it was suspected that erythro could have been a cause/result of my temperature issues.
Just for a bit of background, I have a low grade brain tumour which is putting pressure on brain structures, including the hypothalamus, sending my bodily systems into a spin, especially my body temperature regulation. Post surgery some of my symptoms exploded, becoming worse. The neurosurgeon’s view was ‘I operated, I fixed’ only it wasn’t ‘fixed’ at all. ‘Well maybe it’s a condition called Erythromelalgia …’ was one suggestion. I saw an independent physician and we ended up going through a process of elimination. I was trialled on all sorts of treatments, all sorts of medications, seeing all sorts of Dr’s. It was a real rollercoaster of a journey. But through all of it, it was established that, for me, it was neither erythromelalgia nor scleroderma, and it was in fact my brain.
Now, if you break those 2 specific terms, erythromelalgia and scleroderma, down into their meanings:
‘Erythro…’ means red and in medical reference often relates to blood. ‘…melalgia’ is a ‘Pain of the limb/s’. Where as ‘sclero…’ is often related to a hardening and ‘…derma’ is of the skin.
That may sound all a little confusing but in VERY basic terms derma is the skin, erythro is deeper. Is there a connection? Well, sort of, but I have found trying to get a ‘Yes/No’ answer to either very difficult with lots of ‘Well, it could be…’ type scenarios.
So, as to your question “Has anyone heard of this connection?” Yes, as a symptom of a limb or a region, I have heard of this connection previously. But defining a diagnosis between ‘skin’ or ‘deeper’ that can be REALLY difficult and many medicos can have varying opinions on such a diagnosis.
My recommendation: Follow through with the medicos advice. If their treatments are not working for you, let them know. Go through that process of elimination, eliminating those treatments that are not of benefit to you. From there a more refined diagnosis and treatment plan maybe possible.
Hope it helps
Merl from the Modsupport Team
Hi Merl,
Thanks for your response to my question. Your thorough explanation is very helpful. I hope all goes well with you and will be outright cured…
Thanks again,
John
Plymouth,Ma
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Back (oh, maybe a decade ago?) when I went to a rheumatologist to get my EM diagnosed, she looked closely at my fingernails and noted that the capillaries where the nails grow from appeared some specific way that usually points to scleroderma. I had none of those kind of skin changes, though, and negative antibody testing, so was only diagnosed with EM.
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Thank you Libby for that…The Scleroderma News mentioned several times a possible connection with EM. I am in the process of a claim with the VA.