Hi, I'm new to the group, and I do not have a diagnosis. However, I have been experiencing the symptoms of EM since mid-February. I have been to multiple appointments w/primary care doctor and a rheumatologist twice. When I asked the rheumatologist if she thought I could have EM, she said maybe but it wouldn't explain the joint pain and swelling.
Can anyone share if they experience joint pain and swelling too? My rheumatologist thinks I have some sort of inflammatory arthritis that isn't "revealing" itself in my blood work instead. She's not very interested in my "skin" symptoms even thought they are making my life miserable.
I have referrals to a dermatologist and orthopedic surgeon to try to sample my joint fluid....wondering if I need to ask to see a neurologist too. Any thoughts would be helpful. Thank you.
So sorry you are experiencing all of this… I’d highly recommend a visit with a neurologist. I personally wasn’t able to make much head way with my PCP or rheumatologist. It took me about 18 months to find the right combo of life style changes, meds, etc. keep your head up and know that we will all be the best resource we can be for you. Many of us have been where you are, so know that you are not alone. Hang in there and let us know if we can help in any way!
I am also new to this group. I was finally diagnosed by a dermatologist in February too. I couldn't believe it when I read your question about the joint pain and swelling because I am experiencing both as well. I have been told by my PCP and others that they don't believe they are related even though I told them the severity and duration correlate with the flare. I certainly understand what you mean about making life miserable. Hang in there. I'm so thankful to have found this site.
I have a first-time appt with a neurologist next week and I will share with everyone the outcome of the visit.
Thanks so much for the support & advice. When I read your stories, I realize I'm lucky in that I've only been dealing with symptoms for a short time in comparison, but they have definitely thrown my life for a loop. The discussions have already given me invaluable insight :)
After the latest specialist trips, I will request to see a neurologist.
Bootcamper said:
So sorry you are experiencing all of this.... I'd highly recommend a visit with a neurologist. I personally wasn't able to make much head way with my PCP or rheumatologist. It took me about 18 months to find the right combo of life style changes, meds, etc. keep your head up and know that we will all be the best resource we can be for you. Many of us have been where you are, so know that you are not alone. Hang in there and let us know if we can help in any way!
Thanks so much for the support. It makes me hopeful you received your diagnosis from a dermatologist. I'm really hoping she will be able to figure this out...my rheumatologist doesn't seem to be very interested in the idea of EM. Since we share some of the same symptoms, any chance you also experience other rashes? I've been experiencing burning hands and feet with overall red rash, swollen/painful red/purple joints, but I've also been experiencing other odd skin symptoms. I get random hive-like rashes that come and go (pretty minor compared to hands and feet) and I've also been able to write on my skin lately, which is totally new.
Yes! My rheumatologist seems to think they are either unrelated or caused by something other than EM. Mine also correlate with flares...seem very related to me.
Montana JJ said:
I am also new to this group. I was finally diagnosed by a dermatologist in February too. I couldn't believe it when I read your question about the joint pain and swelling because I am experiencing both as well. I have been told by my PCP and others that they don't believe they are related even though I told them the severity and duration correlate with the flare. I certainly understand what you mean about making life miserable. Hang in there. I'm so thankful to have found this site.
I have a first-time appt with a neurologist next week and I will share with everyone the outcome of the visit.
Yep, I have both. I actually had severe joint paint before the flaring fully presented itself, once it did, then came the swelling. Sometimes I’ll even have this complete with edema type indentations on my knees and elbows. I’ve had EM for about 2 years now, from my first visit to a rhuemotologist to an actual diagnosis took about 8 months, he thought I had fibromyalgia before that, which made next to zero sense to me. I had to bring in print outs from the EM website and photos of my symptoms before he finally felt confident enough to diagnose me with it.
Thanks so much, Elizabeth. It is so nice to connect with other people who can understand where I'm coming from. I've only been experiencing what I believe to be EM for 4 months, but it has felt like an eternity. It helps to know other people didn't have an easy diagnosis....and I'm guessing I'll be no different. By chance, do you or did you experience any other skin symptoms? Like rashes, dermatographia, etc. ?
Elizabeth said:
Yep, I have both. I actually had severe joint paint before the flaring fully presented itself, once it did, then came the swelling. Sometimes I'll even have this complete with edema type indentations on my knees and elbows. I've had EM for about 2 years now, from my first visit to a rhuemotologist to an actual diagnosis took about 8 months, he thought I had fibromyalgia before that, which made next to zero sense to me. I had to bring in print outs from the EM website and photos of my symptoms before he finally felt confident enough to diagnose me with it.
Hi, I am new to all of this since March 15th when I noticed my toes turned red and hot while making dinner.
I don't have and swelling or joint issues, but I do have a "rash" on my thighs that burns when I am not walking.
I met with a Hopkins Derm who said I don't have EM, but I think he is very wrong. He didn't even know EM could be secondary!! I am headed to Mayo clinic on June 9th to see a neurologist and have a ton of tests run.
My local derm was quite helpful - he was also Hopkins trained and when I first told him about my burning he gave me steroids and said it was hives!! I took the steroids and when it didn't help a bit, I called him crying and he said," maybe you are right about EM" He gave me Cytotec to try - it's a vasodilator. Thanks GOD it helped as it could have made my burning worse.
I am currently on a slew of meds - combo of derm, and my primary doctor to help with my burning and pain.
cymbalta 30mg. lyrica 75 mg 3 times per day, cytotec every 6 hours, and amitriptyline 25mg at night.
It does help, but I still feel the burning in my thighs!
I will post what Mayo says about me.
Good Luck and Know you are not alone. In fact, I think a lot more people have EM that is known.
Update: Still no diagnosis or any closer to knowing what is wrong with me On to specialist #4 tomorrow, a hematologist. The only blood work to come back not normal was my hematocrit…slightly elevated. Symptoms & pain are awful but not knowing and thus receiving no relief is worse. Rheumatologist isn’t sure, dermatologist had no clue (2 biopsies with stitches = inconclusive), and then an orthopedic hand surgeon…Really hoping the hematologst can help. Otherwise, I’m not sure what to do next. No one seems to think I need to go to a neurologist and all of these specialists are getting expensive. Additionally, the stress of each visit is a lot…each time I hope someone can help, but no one seems to have a clue to what’s the matter.
I was finally diagnosed with EM two weeks ago by my hematologist. At this point, he seems to think it’s secondary to another condition. Along with a myriad of strange rashes, I experience joint pain, swelling, and high blood pressure. All of my rheumatology tests have been negative, though, so my PC sent me to hematologist to rule out PCV and mastocytosis (which is unlikely with my symptoms).
Very frustrating, but I’m grateful the EM has been diagnosed and MAYBE I can find some relief. I began taking a baby aspirin a day after I was diagnosed, but it doesn’t seem to be helping. Unfortunately, it’s in the high 90s (soon to reach 100) in TN at the moment, which I’m sure isn’t helping the situation. I’m getting rather desperate for pain relief, and without a “diagnosis” of a possible primary condition, the doctors have been basically ignoring my complaints of pain
Yeah, I read your most recent message after I had already responded. You definitely have unusual symptoms. EM can explain the burning, redness, and swelling in your hands and feet, but not the rash, joint pain, high blood pressure, or elevated hematocrit. It does seem like you have something else going on.
Elevating your hands and feet (above the level of the heart) helps alleviate your symptoms, right?
Do you have a picture of your hands or feet during a flare?
Yes elevating helps as does cold water sometimes (it at least helps pain). I agree that the unusual symptoms most likely indicate another condition in conjunction with EM.
I will try to upload some pics. I don’t have very clear pics of my hand, but the hematologist provoked a flare by soaking my hands in hot water…looks way more intense than pic.
It’s very painful Yes, you are correct: prominent veins are very atypical for me. Since my symptoms started, I have very prominent swollen veins on fingers, feet, and ankles. My fingers, especially on my right hand, are the worst, but I experience bilateral flares on feet and hands. Sometimes it even seems like I flare on my knees, but not as severely.
I usually get multiple flares in one day, which usually happen when I get hot (walking outside) and at night. Lately, my toes and fingers have begun to stay a molted color.
I cannot think of any specific event that predated the onset of symptoms. The only slightly “unusual” (but not unusual for me) events were I had back to back sinus infections in January and February. I did give my doc a list of the two antibiotics I took, and he didn’t think they were related (and if it was caused by medication, it should be improving instead of worsening).
Hi BNashville,
I have had much of the symptoms you describe coincide with the onset of my red, hot, swollen and burning limbs. That includes areas of hives which seem to be triggered by heat and only last a few hours and red splotchy rashes and livedo reticularis. I also initially experienced joint and bone pain in my hands and feet when it started over a year ago. The achy or stabbing or crushing pain felt in my ankles, feet, toes, wrists, hands or fingers, has calmed down and my burning and swelling episodes have been less severe over the last month. I also have achy pain in the long bones in my forearms and shins. I was extensively evaluated for Rheumatological disorders and had one marginally abnormal ANA level, one test with a low hematocrit and every test with high inflammatory markers, particularly the C-reactive protein, which is always over 5.5, but has also been at 14. Additionally, I have had many symptoms of automatic dysfunction (off-balance, jerks and twitches, wild blood pressure and body temperatures, flushing, sweating, not sweating, dry eyes and blurry vision, etc.) I just saw a doctor who I thought might confirm Erythromelalgia and he thinks I have Reflex Sympathetic Dystrophy. I now have a ton to research with that. So, if nothing is clear yet, you may want to have that ruled out. Of course, it is also rare and difficult to diagnose, but more doctors seem to know about it.
On to specialist 
