I have had EM since I was 10 years old, I’m 24 now. I had no idea what it was, my feet and hands swell and turn blood shot red when I touch warm water. I only had pain when I first developed it, it was severe and lasted for 1 month and went away. But the swelling and the extreme red blood pooling persists till today every time I take shower, wash the dishes, exercise, or stand for too long. I have not had a proper diagnosis. At the age of 10 when this first developed doctors have not taken it seriously at all especially because they couldn’t see it since I didn’t have a trigger in a doctor’s office. I also know that as a woman most of the time my symptoms are not taken seriously or believed so I don’t go often unless I have skin issue. (Throughout my life Iv’e had PLENTY of skin problems). I tried to ignore EM most my life because I considered myself lucky that my EM wasn’t associated with pain like everyone else’s. Im here now because I have noticed the EM spreading to my knees after a warm shower. It has never spread that high before and I noticed lingering redness on my knuckles as well which has never happened before. I’ve developed rosacea 4 years ago and it has made me very depressed. I didn’t think it was related to EM but now I’m not sure. My trigger for nose flushing is indoor heating and some type of allergen. Unlike my hands and feet, my nose is red all the time now. I’m not new to EM since it lingered my whole adolescent life but I am new to understanding that there is a community of others who suffer as well. This type of forum was not apparent to me in 2005 so I’m hoping to read through these threads and also see if anyone who reads my post can help me as well. I have had high cholesterol diagnosed since I was 6 years old. I’ve always been a very healthy weight but this was just genetic. Ive always had a heathy diet throughout my whole life except I am guilty of eating too many sweets. The past week I had a lingering pins and needles feeling in my hands and feet at night. After doing some online research I read that this could be a symptom of prediabetes or celiac disease. Last year my blood sugar was high but not prediabetic yet and my cholesterol was still high so I don’t think I’m pre diabetic. Not sure if I have celiac. I have not had digestive issues before. Are these things related? My Rosacea is very seriously depressing me. I do understand that most people in this forum suffer more than I ever had because of the pain that comes with most EM sufferers. I do feel guilty saying that these new symptoms are making me seriously depressed but I need to post and ask a community who can help me. I will of course visit a doctors office but that’s the last resort since they have never been helpful to me before. Does anyone know what causes my EM with no pain, and why it’s spreading? What I can do from here?
I think you’ll find everyone here very helpful and lots of reading to help too. You mentioned having Rosacea and I wonder if you know that from a diagnosis. I thought I had it too many years ago. A redness across my face and nose that persisted and, yes, it is depressing. I assumed it was Rosacea. It eventually let up some; at least enough that I didn’t constantly have people asking if I had a cold because my nose was so red! Now I believe that it was Lupus. I got diagnosed in 2018 with Lupus after having a very bad rash on my chest and arms. Biopsies showed I had Lupus, of the skin variety. I was also having very bad hot feet, worse than it had been before. I’d had hot feet “forever” but, after going on chemo for breast cancer, the feet got much worse. They did a biopsy on that and came up with Leukocytoclastic Vasculitis which I evidently DID have at the time but I also knew it was not what was plaguing me for all these years. Eventually, after my research and input, a dermatologist said I probably have Erythromelalgia. I got some relief with Hydroxychloriquine although not immediate. Now I can’t even get that because of the COVID-19. Anyway, it seems to me that most of us have underlying conditions along with EM. The red face that I thought was Rosacea was probably Lupus which shows up across the face in a butterfly shape. So, if that’s the case, I’ve had Lupus a long time too. Strange that I’ve had all these things even though I always ate pretty healthily and was a farm girl with lots of strength and felt healthy. Also have Restless Leg Syndrome since childhood. I just didn’t know I was different from anyone else! I lived with it.
I don’t blame you for not wanting to go see a doctor. I’ve been to so many specialists trying to find relief for my feet and they keep passing me on to yet another.
Thank you so much for responding! I was diagnosed with rosacea, but I do have that butterfly shape rash on my nose and upper cheeks. But I would say my rosacea isn’t really triggered by the sun, its usually an indoor heater or if I walk in a room with some type of allergen(like a carpeted room, dusty, etc. ) Outside my symptoms for rosacea are calm. Would that still be a symptom of Lupus? After the COVID calms down I would request to see a specialist. Thanks for highlighting that Lupus may be a cause, something I didn’t know before!
I looked up a good article about Rosacea and Lupus that was very informative; perhaps it will answer some questions for you.
As for specialists, I wish you well at finding the correct one. I tried a podiatrist (foot dr.) first and she didn’t even look at my feet. Just talked to me about it. Sent me on to a dermatologist and she also couldn’t handle the EM problem so handed me over to her senior doctor with more experience. He finally talked me into going on a long drive to our University Hospital against my will to a more knowledgeable dermatologist. After that didn’t work I was referred to a neurologist. I’ve seen 3 different neurologists by now with little help. Now I’m being referred to a rheumatologist, probably because I have these autoimmune disorders and hopefully he’ll know about EM. We’re all different so it can be difficult; even if we find a medicine that works for one, it might not work for us.
Did you have any bloodwork indicating Lupus?
I’m sorry you can’t get plaquenil right now in the covid madness.
They took biopsies where I had the rash, on arm and chest, and tests came back that it was Lupus. I had a couple of biopsies before that on my feet and that one was for Leukocytoclastic Vasculitis (I had purplish spots that looked like blood blisters on my feet and lower legs). The biopsies and blood tests don’t show Erythromelalgia; apparently that’s only a guess by symptoms.
Thank you for your reply.
I guess I was wondering: if you had / have positive ANA or any other autoimmune marker / inflammation on your bloodwork.
My bloodwork is all normal and I had begged my doc to take a biopsy, on the chance it could tell him any more information, maybe lots more immune cells than they thought, or whatever. He has said it likely would reveal only perivascular inflammation (like other biopsies of idiopathic patients he’s taken) and might exacerbate symptoms for me so he does not want to do that.
Thank you! I will keep the forum updated with my journey. I do see that there is a neurologist with EM experience in these forums and she is close to me so I will try to make an appointment.
I’ve read about that kind of testing but never tried to bring it up to a doctor.
As for a biopsy, I had a bad time with those on my feet. One was located closer to my toes and one halfway up my foot; took months to heal and the second one took a full 6 months. It started out about a 1/8" plug removed, kept getting larger. I now have a 1/2" scar and it’s sensitive. I assume it’s because of the EM.
I think a lot of us mistake rosacea when it really is just more EM. EM can easily affect the face. I know I did. My face always turns beat red and hot after exercise or being out in the heat. It can take a good hour for it to return to normal after coming into the air conditioning.
Also, if you are looking for a diagnosis of EM, there is no point going to doctors that are unfamiliar with it. Do your research and find someone in your area that has experience with it. If you have to, drive a few hours. It will be worth it. It can be a neurologist, a dermatologist or a rheumatologist. Although you will probably have better luck with the first two. EM is a secondary condition to RA and AS but my experience, most Rheumatologist know nothing about it and don’t want to.
Hi WoodArtiste -
Want to thank you -
I recently had a biopsy on my cheek - Two docs did not think it would be helpful (I had begged them to take one for yrs!), Another doc was sure it would show rosacea (was even talking about accutane and oral ivermectin, she even got a weight for me right after the biopsy so she could start calculating doses for those things!). It showed significant inflammation of lupus / dermatomyositis (the 2 can’t be differentiated in a biopsy) and no rosacea. Previous biopsies in my leg show SFN. I always guessed that neuropathic pain meds were having limited effect for burning because there was too much inflammation around. I failed one immunosuppressant already but we are talking about others. We’ll see. I am hoping a combination of sodium channel blockers / antidepressants and methotrexate / cyclosporine / whatever immunomodulators will be the answer for me, I just have to find the combination.
Do you think facial EM would have a baseline redness? When i’m not flushing, my face seems to go back to certain color of red that isn’t as bad as when i’m flushing but it lingers regardless of the situation.
please keep us updated