First off, I am so happy to have found an online community that is so cohesive and sympathetic. Since I have felt NO pain as a result of my EM, I feel like I have not been taken seriously when I went to see doctors about my condition, hence I am currently undiagnosed. I plan to get a definitive answer soon!
I experience the signature flare ups where my hands and feet will turn raw or reddish in appearance at my side, which is only relieved by elevating them. Triggers are also exactly the same as what people mention: changes in temperature, caffeine, hot foods, etc. I also get deathly cold hands and feet, perhaps a mild form of Raynaud's, and it cycles between what I believe are the Raynaud's and the EM. I also have palmer and plantar hyperhidrosis. Took me a while to figure out what was wrong with me, as I had to break down each individual condition. A faulty sympathetic nervous system, however, binds them all (pardon the corny Lord of the Rings reference ;)).
Anyways, I was wondering what kind of medication (topical or oral) could help relieve my flare ups (or appearance of flare ups), or normalize the subcutaneous vessels in my hands and feet? I am currently taking aspirin and omega 3's interchangeably in the morning and night, and it is helping a bit. What kind of over the counter, or prescribed medication should I look into before going to the doctor? I just read that a new sodium channel blocker is currently being researched to get at the heart of EM...sounds like some really exciting stuff!
Although I don't have any treatment answers for you (currently not taking any drugs), I wanted to chime in to mention that most of my flares are also not painful - just super hot and red with some swelling because of all the blood. When a flare gets particularly bad, there is a stinging/tingling sensation on top of the burning, but I'd say the worst my discomfort gets would only be maybe 3 out of 10 on the pain scale. And that may be physical pain because of the heat/engorgement rather than the neurological pain others have described. (That said, I have definitely also experienced sciatica and tingling/zapping nerve pains in my extremities separately from the hot flares). I also have mild raynaud's that seems to always be keeping my toes chilled between flares.
I, too, have gotten no answers because I'm not a textbook case of anything, EM or otherwise, although I have an appointment with a new rheumy next month who might be able to diagnose. I would also be VERY interested in treatments that affect the actual vessel malfunction rather than the pain meds that help those with intense pain. Please let me know if you uncover any info on that!
My EM started off with just tingling/pins and needles in left toe, then foot, both feet, lower legs... you see the point. It then started getting red, swollen and hot. Uncomfortable but not what I would call painful. This changed over the first couple of months to intense burning that felt like somebody had literally set fire to my feet, then go that horrible numb type feeling. I now bounce from having just tingling in both legs to burning pain. I was dx with secondary EM and queried Raynauds with gp because I have more severe pain in winter going from icy cold flares to burning hot flares as soon as I go indoors. My gp said, it doesn't make any difference to me if I have raynauds as well because the pain treatment would be the same.! I'm not sure if this is the case or whether I was just being passed off.! I have however had a recent MS dx so some of my nerve pain/tingling could be down to that.!
I like how you call it 'engorgement', because that explains it to a tee. Sounds like you are in the same boat as me, except that I dont get the tingling or pins and needles you describe, unless my legs or hands fall asleep when I unintentionally cut off circulation. Although I did feel some tingling in my feet when I got in the warm tub the other day. Anyways, we should def keep in touch if we find out anything that can alleviate the over excitability of the vessels, which would be more at the root of EM I suppose you can say. I also found some doctors off this site in my area that deal with EM, so I will be giving them a call within the week to book an appointment!
And hey Lauraflora,
It seems like they say that people with EM should move to colder climates, but my flares get worse in the cold. I think its because the hands and feet get really cold (one extreme), and this brings on a more pronounced response to overcompensate the cold once you get inside into the warmth, causing a more intense flare up. At least in the summer temperatures, it is more constant and less fluctuated.
And you were recently diagnosed with MS? I am really sorry to hear that Laura...does it have any connection to the EM, or is it hereditary for you? Is there anything you can take that can help mylenate the nerves?
got the same deal, not painful. just veins bulge out and hands get tingly/warm. veins bulging out is the worst because it feels awfully irritating, as if they are about to explode. i have not yet been diagnosed with EM tho. Im waiting for a rheumatologist
Keeping in mind this is just what happened to me.
I first started with swelling of the blood vessels and warmth in my hands. It didn’t really hurt. There was some sensation that alerted me to something happening but it wasn’t pain. At that time I had no idea it was related to temperature change. Fast forward almost 10 years from the first time that happened to me. All of a sudden I had the most horrific burning pain in my hands as if I was being burned by an iron or some hot implement. I still had no idea this was due to temperature. Over the next 6 months I get that in my feet too and knees. Now there is very little on my body that hasn’t burned at some time or other.
I don’t say this to scare you. I say it to encourage you to continue to seek treatment and hopefully it never becomes painful. Who knows it may never become painful even without treatment. I just wanted you to know that EM doesn’t have to be painful and it can start out that way and become painful. I just hope you get it all figured out and never have to suffer from the terrible burning:)
Take care ,Alina
Ya, I just got a referral from my doctor to see a dermatologist who has treated patients with EM...got his info on this site. You may wanna have a look in the "doctors" section Deon, cause I have gone to several doctors who have told me there is nothing wrong with me. They simply have no knowledge of the disease, and if you have no pain, you have no problems. Do not be surprised if the rheum has no idea what EM is...try doing some research so you can tell them what it is haha. You live in Calgary huh? Im from Toronto actually. Nice to see a fellow Canadian on here :)
And my "EM" (undiagnosed as yet) has been the same ever since I can remember (13+ years). Hope it doesn't get worse!! I am going to teach in Australia in April so I hope to get at least an appointment before then...
Hi guys, just wanted to let you know that I received an EM diagnosis last week from a rheumatologist. She knew what EM was and I'm waiting for results on numerous blood tests to check for underlying issues. She didn't know of any treatments that specifically work on the flares, but said I could try gabapentin (which I won't unless this becomes super painful - I tend to experience the worst side effects drugs have to offer).
Great to hear you have finally gotten answers. So I guess you can have EM without experience the signature pain associated with the condition. Makes my diagnosis only a matter of time then. I, myself, am still waiting to get a call to book an appointment with the derm who can diagnose me. Keep us posted on your progress Libby! We are fewest of the few...gotta stick together :)
I've also been diagnosed with EM last month (started in June) and do not feel pain during the flares (so far). I was suspicious of the diagnosis at first because of the absence of pain but now I feel more confident about it after reading yours and other people's similar stories - thank you for sharing!
Like you, I also have cold feet and hands and sweat profusely, both during flares and with cold hands/feet (I self-diagnosed with palmar and plantar hyperhidrosis). No pins and needles unless I cut off circulation. Have you ever had trouble with fungi because of the moisture+heat?
So far I only tried aspirin, which may have caused the flares to be unilateral occasionally. Was prescribed propranolol but seems potentially inadequate to my case taking into account articles by Dr. Cohen and Dr. Belch. The neurologist said the propranolol should help with the excessive sweating though; waiting for a second opinion from a rare disease specialist I'll see in January.
Hi Tarisus. I just have to ask about your rare disease specialist. How did you find this doctor? He/She specializes in rare diseases? That would be amazing to find such a doctor. My doctor treats me but pretty much I bring them info on treatment options and they let me try them. If one doesn't work we move on to the next but I do all of the foot work. It would be nice to see someone who specialized in rare diseases.
I am glad you have found such a doctor.
I didn't actually find him/her directly. An aunt of mine, who is a retired internal medicine doctor, told me she knew a rare disease specialist but so far that's all I know. Hopefully in January I'll know more.
I've had pretty bad experiences with doctors so far (regarding EM and other conditions) so if this one is good it will be a relief! When the neurologist and angiologist made the EM diagnosis I was jumping with happiness! But even them gave me a really high dose of aspirin (1000 mg - I expect to make sure that if doesn't work it's not because it was too low...?) or propranolol (which I'm not really sure is adequate for my subtype of EM).
I have exactly the same symptoms, but no pain. My hands, knees and feet only feel uncomfortably warm. Sometimes my ears. My hands and feet also get really cold when I’m not having a flare up. I’m glad that I don’t have any pain and I don’t think I ever will, because I’ve had EM for over 4 years now and my symptoms have stayed the same. I live in Finland and I haven’t found any doctors that know about erythromelalgia, only Raynauds. Living in cold and dry climate helps my symptoms and cold water. Humid weather is the worst! I haven’t used any medications, but I’m eating a lot of supplements like curcumin, magnesium, omega 3, zinc, b12 etc. I’ve seen some improvements. I have IBS and I think MAYBE it’s making my EM symptoms worse. I haven’t found any studies or info about this.
I also experience the same, no pain but extreme redness,burning and swelling. I’ve tried some of the drugs always mentioned which work on the nervous system but none were successful or couldn’t tolerate side effects. My first relief besides soaking cool not ice water is cyproheptadine. It’s not a magic pill but helps. I also take an aspirin an amitriptyline at night. I still have flares but these are helpful.
@herdfan I think the burning sensation and swelling is the pain that is often associated with EM. On a separate note, have you tried feverfew and white willow? I responded well to cyproheptadine and added both of these as they are also serotonin antagonists and they help, feverfew the most. My PCP is looking into if I can get pizotifen to try as Dr. Cohen said it was the best medication he took. Another thing to look into is to have your serotonin levels tested via a urine test measuring 5HIAA.