Hi everyone! I have been diagnosed with both Raynauds and EM for years. I recently changed rheumatologist and this one says that with raynauds your fingers turn white first. I have not had a problem with my feet or hands turning white but they do change colors like blue, purple, red when they are cold. Also when my legs are down the colors change in my shins, calves and feet. When I put them up the color goes away. Does this happen to anyone else? With the EM my hands and feet are red and hot and they stay that way. I also suffer with lupus, fibromyalgia, failed back surgery, migraines and severe fatigue.
My symptoms are very similar to yours. I have raynauds in my hands and feet, and em in my feet only. My legs do turn dark if they are down for any length of time, sitting only, standing brings on the em in my feet. There is no relief either way. The raynauds is much more manageable. We flew round trip the past two weeks to Ireland and I did have a few enlightenments. First, my ankles swell. I have never flown before, so this was a new experience for me. So, second, luckily ( lol, not) my husband wears compression socks. Once we got to Dublin, I wore them, totally expecting them to cause a flare. It did not happen. I wore them for the next two weeks with tennis shoes. No issues. I only wore my Birkenstocks 2x because it pretty much rained every day at some point, but it was warm enough to bring about a flare. My em started about 5 years ago, the raynauds, 10. I also have lupus, migraines and tiredness.
When I fly my ankles also swell. I do use compression socks when I fly but for some reason they still swell. I am unable to wear them walking around especially in warm weather because of the EM. It’s just an awful feeling not knowing which is going to flare next.
Hi, I was simili-diagnosed with Raynaud’s by a primary care physician too. After reading a book on Raynaud’s and some research about Erythromelagia, I saw that in some description of Em include having purple discolorations in the affected members when they are not flaring. When I talked about it to my rheumatologist she told me that if Raynaud’s was causing those discolorations, when I would press on my feet when they are purple, the white spot it leaves last for longer than 15 seconds or so; which it did not in my case. When I put them up the color goes away too.
Aside from that, I hope that you receive a good treatment for your lupus as it should help with all your other symptoms including EM.
With Raynaud’s there is decreased blood flow to the affected area. This decreased blood flow causes the area to become cold and discolored. When the affected area warms back up, blood flow rushes back in, causing the area to then become warm, red, and sometimes swollen.
How can anyone with Raynaud’s be certain the warmth and redness they are seeing in their extremities is from Erythromelalgia and not Raynaud’s, when the reactive symptoms of Raynaud’s mimic the symptoms of EM? On what clinical basis is the diagnosis of both being made? What observations or what tests?
There is one book on Raynaud’s, maybe I can find it again if you want, It said that the discoloration caused by Raynaud’s will not change depending on your position, but it will for erythromelalgia. Also, Em’s predominant symptoms are having red and warm skin, Raynaud’s predominant symptoms are the coldness and the red blue white discolorations.
That said, even though both syndromes look like opposites, some researcher think that one form em is produced by the same mechanisms that cause Raynaud’s (your blood flow is decreased in your extremities and em symptoms happen when it increases). Also, both diagnoses don’t seem like they are widely agreed on and they can be caused by so many things. One test that I saw can help distinguish between the two is a doppler scan to see how the blood flow of your affected area can change under certain conditions, like heat or cold. But in the end, it all depends on your particular symptoms, the experience your physician has with both Em and Raynaud’s and the therapeutic value of pursuing such diagnosis and tests.
Hi JW13. That’s interesting what you said about raynauds not changing when legs are up. Were you able to find that book?
The book is called Raynaud’s phenomenon : a guide to pathogenesis and treatment by Fredrick M. Wigley, Ariane L. Herrick, Nicholas A. Flavahan (on SpringerLink). The important information is on p.174 under the Erythromelalgia rubric and the “Evidence That It Presents as Raynaud’s” section.
There is also this article ( http://opensample.info/between-episodes-of-erythromelalgia-a-spectrum-of-colors ) that postulates that some people’s em is a phase of Raynaud’s (it is just speculative though)
Both may be caused by small-fiber neuropathy, which makes it even more confusing.
I am going to show this to my rheum. Thank you very much for the information. I just wish someone would figure out what’s going on with me. I am so tired of hearing “you are a complicated case.” I just saw a new neurologist he is going to test me for small fiber neuropathy by doing a biopsy. I had one done 7 years ago and it came back negative. It’s horrible being in chronic pain everydat. Thank you again!
JW13,
So I was reading your post and I question my self on do I or don’t I everyday it seems because I have not yet found the validation from a doctor on EM. When the vascular doctor said I had Raynaud’s I said ok but yet didn’t feel like that was really it so I continued to read and google my symptoms trying to see what else it could be. That’s when I read about EM and I felt for sure this was what I had. My hands are the worst but my feet face and chest and ears and now upper arms are effected. My hands do not turn white like people say with Raynaud’s and for me while yes my hands become very cold along with my feet it’s the heat that I have the worst intolerance to. I also have done the elevation test and when my hands are flaring so bad when I lift them over my head I can feel and see the blood drain down ands feel better but soon as I place them back down veins bulge and the red swollen and heat return imideitaly. I am now waiting for my apt to see a derm doctor in Arizona that knows about EM so I hope to have my EM diagnosed by this doctor so fingers crossed.