I have EM without the severe pain since 2011. It stabilized with meds and did not progress. But early on I was having 20-30 flares a day with little relief except cold water and elevation. There is no one size fits all when it comes to EM symptoms and it was trial and error until we found the right meds for me. Find a good neurologist who treats EM. Good luck.
My feet get hot but I don’t have spontaneous flares where they blow up like before. I hike in the hottest of summer now and periodically i have to stop and cool down, taking off shoes for less than 10 minutes does the trick. My hands rarely ever get hot anymore.
Flares i think are different than just hot though. When all this started I used to flare when i was completely inactive - just sitting on the couch. I could feel almost a pop in my big toe and the heat would spread throughout my foot. Those kinds of flares would only go away with ice water and that was temporary until i found meds that worked. For me winter was even worse early on…which never made sense to me. Many a time I had my foot out of my boot and in a pile of snow to get through playing with the kids in winter! I was terrified based on everything i was reading on the internet so be careful. I feel like no two cases are really the same and you shouldn’t try to predict your outcome.
But i am curious, u are saying that just get hot feet, but what about the redness? Do they get very red, with enlarged veins? Is it possible to treat that with meds aswell?
Because thats the case for me aswell, and it may sound like we have the same case My EM isnt painful, but the redness and hotness is VERY annoying, would do anything for meds or anything else that would reduce it.
Mine is very much like this but I don’t think that some people have “pain” in a traditional sense. For me it is the feeling of the heat and excess bloodflow that are very uncomfortable and keep me from doing activities that trigger it. Some might feel sharp pains as EM in most cases is neurological and may be similar to CRPS triggers where abnormal pain responses are sent to the brain.
Interesting. Can I ask u for how long have u had these symptoms for? Over many years? And u still cant feel any sharp pain? Because i have read that it gets worse over time, while others again sais that it can remain the same.
I have had it since the end of February this year, came on after surgery. I am currently being seen at Mayo Clinic for treatment (I meet with neurologist tomorrow to discuss IV prednisone or IVIG). If you have symptoms, see a doctor about it because it means something is going wrong. EM is more of a symptom and there is always an underlying disease, whether it can be found or not, and I believe that this might be what determines if it gets worse or not.
That is factually false. Primary erythromelalgia is caused by mutation of the voltage-gated sodium channel α-subunit gene SCN9A. Tthe primary effect of erythromelalgia mutations is NaV1.7 channels that activate at more hyperpolarized potentials.
As the anesthesiologist who treats my erythromelagia wrote to me in 2015:
the mechanism of erythromelalgia typically involves sodium channel defects
You didn’t write there is always an underlying cause, you wrote there is always an underlying disease. Primary erythromelalgia is an independent disease state caused by a genetic mutation. There is no other disease involved. The disordered expression of the gene is the disease.
The disordered expression of the gene is the disease.
This is all that I was getting at, I was merely just saying that there is a cause and that finding it by seeing a doctor is worthwhile. I am unsure as to why you have attacked me on multiple posts, I was just trying to help. I’m sorry for the confusion again. I won’t post unless I am 100% positive about stuff again to spare a mix-up.
It wasn’t meant as an attack. I understand you may have used the wrong word in expressing yourself. That one word just completely changed your intended message. Don’t let that discourage you from posting.
I agree with Joe. I feel that your responses feel like attacks. You’ve made them to postings I’ve made and many others. I feel you’ve likely discouraged many from posting. I feel we should honor a better tone of respect towards each other then your replies have offered.
I am open to criticism. Where I’ve been insensitive, I’m willing to accept that criticism. However, one of the reasons I was asked to be moderator is my dogged insistence for facts. The community is here to provide emotional support. Integral to that mission is that the scientific information provided herein be accurate. Basic facts should be correct, with extraordinary claims backed by extraordinary evidence.
Have you been to see a doctor to find out if this is EM? I know it can be a struggle I went to about 6 different doctors before finding one that would really listen to me and hear everything I had to say. Mine started about 2 years ago and it was only maybe 6 months ago that I finally found Dr Nguyen (dermatologist) who diagnosed me with EM. So I live in Arizona and as soon as I step outside on a hot day I instantly get pins and needles throughout my entire body. My veins buldge and my skin turns extremely hot and swollen, my hands are the worst for me but my feet and knees and face and ears are also effected. Even if im just sitting even inside I can flare I probably have up to 30 to 40 or more flares a day. Also my hands will feel itchy. I think everyone has different levels of pain with there EM I dnt think anyone of us are exactly the same but like you I was also worried that over time would things get worse or would they just remain the same. The first thing for you would be to keep trying to find the right doctor with knowledge of the disease and then from there they can help to try and control your symptoms which is where I am currently. It’s basically trial and error with meds as well because what might work for one person may not be right for you. Whatever you do just keep going don’t get discouraged you have to be your own advocate even if it takes many different doctors. Im glad you found the site for me I love it, just having others to talk with who can relate to you is a GOD send becasue I was pretty down and feeling all alone until I found others who were also dealing with the same issues.
Yes, i have been to my primary doc, but they doesnt take it serious, just the normal quotes, its normal because of the heat etc.
Yes, i have problems at the summer to. But my toes/feet is only affecting me, and its so annyoing, especially the feet. It looks so weird/ugly, when my toes gets SO RED with bulging veins. The only thing that helps is only to have the feet high up, or walk at a cold floor. But, i have no pain.
But have ur symptoms increased? Since u first noticed ur symptoms? Has the pain progressed?
Well I went to my PCP first then she sent me to a rheumatologist who said well you have something but whatever it is wnt kill you, he then sent me to one dermatologist who basically said well so it’s not happening right now even though I was not flaring right then I had many pics but yet again was shot down. I was then at a vascular doc who ran many test but had no mention of EM and thought I had everything else but didn’t. I then began my own hunt online based on symptoms and I then read about EM and it seemed every symptom that I read about I had. So I googled docs in my area that knew about EM which was like 2 at the most one was dr nguyen she is a dermatologist when she saw me I was in the middle of a flare I showed her all my pics and told her my symptoms she was immediately like I believe you have EM. Then she asked me to meet with her people at the Mayo has her guest so I agreed I mean the more people who might be able to help me why not right. So I went and I must of talked to 40 doctors and showed them all the pics from the past 2 years and they all came to say yes I did in fact have the EM and I have been seeing her now regurley to try and find the right thing to help control my flares. She currently has 3 EM patients me included. To answer you question mine has gotten worse what once was only hands and feet is now knees face ears and upper arms. No change though in the last 3 months as far as getting worse so that’s good. I was flaring like 50 times a day with the meds right now it’s about 20 to 30 so that’s nice. Just hang in I know the process is long and hard but keep going the right person is out there that can help you get to the bottom of things.