Ryan Junes - Erythromelalgia 

I have had EM for 6 years now! Those with EM know how brutal the pain is. I had to retire from teaching job I loved (32 years ) because not only was the pain brutal, but the pain meds, which basically are useless caused me to zone out😢. My pain level is rarely lower than a 6 every minute of every day. When I have a flare up which can last from 15-90 minutes the pain level feels like 1,000. What is insidious is the flare ups are random!! I might be lucky and only have 1 flair up a day but i tend to average 3! No treatment!! No cure!! What works for some doesn’t work for others!! My heart and prayers and hopes go out to all of us with EM!!! Thank you for letting me share!

I am 23 and I have it in my face really bad!! So happy to see these videos that recognize attention to it!!

I believe this is way more common than medical professionals believe. I've had red ear syndrome since I was a kid. It never occured to me that it was a syndrome and I should mention it to a doctor. Over time, symptoms now include burning red toes, fingers and face. Just recently (three months ago) I was diagnosed with high platelett count. I never mentioned my symptoms to my haematologist or my general practitioner because I had no idea it was relevant. The haematologist didn't find anything to be concerned about, but performed no tests or ask any questions about burning and redness. Thank God for RU-vid and people who are willing to discuss their experiences. My symptoms began in childhood. I was used to it and just thought I was weird. Now that I know these things are connected and my symptoms are worsening, I have scheduled another appointment to discuss diagnosis. If others have followed my same projectory, there are a lot more cases out there that are mild enough and are progressing slow enough that they are not being brought to the attention of doctors. I am concerned for my future, but hope that my symptoms don't get any worse. Does anyone know if diet changes help?

I had this to a less severe extent as a teen and young adult. It resolved spontaneously sometime in my late twenties. Now both my sons have it; again, not as severe as this.

I am sorry, but I do not believe this is as rare as western medicine is saying.

Stay strong 💪 I know what you're going through EM sucks

Im 16, and was diagnosed about 2 years ago the worse part is that no one understands me . And doctors are still clueless as to why my symptoms change etc

I have EM three years already. It is horrible. This is what I do to stay away from the pain. I soak my feet in a bucket with cold water, half a cup of Epsom Salt and 1 tea spun of baking soda. I do this three times, the last one 30 minutes before I go to sleep. The bed is the enemy #1 so I bring two small wet towells with cold water and cover both feet with them. My feet are close to an open wind all year round. Also I have a fun working all night in the summer while I am sleeping. My doctor prescribed Gabapentin, I take 4 capsules of 300 mlgs one hour before going to bed. No close shoes, only breathing shoes. There is a NPO called TEA Erythomelalgia. Contact them. They are in California. Good luck to all of you.

I have em and raynauds, it's annoying to have to keep flipping between the ac and the heater but despite the pain i still will sacrifice my body to have fun outdoors as long as it's not triple digits or above 90, i live in Texas. Due to my many other chronic mental and physical conditions, it's not possible for me to leave the state at this time but trying to explain that to people who wonder why i can't make myself happy and do my hobbies is like talking to a wall. This condition makes the skin really sensitive too but i don't know what mine is caused by, just began when i hit puberty and have had it for 15 years.

I recently just got diagnosed with EM it’s so scary

I have it; it is horrifying. (I got it after almost dying from HA septic shock and being on a ventilator in the ICU. Until then, I had been happy, healthy and productive. Now I am the exact opposite. I, too, have heard that I need to 'talk to someone', but this came from doctors who could not find out why I remain in so much pain. Even showing them photos of the flare ups did not help, because I am older and single, and it was the fault of doctors that caused my illness. I live in a small community and will likely have to find the strength to travel for any decent treatment.) I have not given up because giving up is not part of who I am; however, there are too many days when I wish I could just pack it in. I pray that God heals your son completely and forever.

God bless you!

i’m 16 and have minor symptoms, it’s painful a little and really red and my veins become really bulgy. i also have anxiety and i’m freaking out what i’m gonna lose my legs or something

Mine is hereditary, born and raised with this annoying disorder, not sure if I'm going to able to get a real job and be able to stand up all day, so I doordash, that way I can come home anytime I want to cool off my feet.

I suspect I have this, though a more mild version if I do. It began when I was 21, I’m 29 now and my symptoms are worse now but still fairly mild. My hands are red hot every night, feels like a bad sunburn really…At work whenever I need a manager I have to go knock on the office door. When my hands are in that red state just knocking on a door hurts so bad…I can’t be out very long on a sunny day before my hands start turning red. I was diagnosed with rosacea years ago, but maybe it isn’t rosacea... I’ve never showed my doctor my red hands. I’m thinking that I should.

I have this it mostly affects my fingers in the winter. I get a lot of chilblains and my fingers feel frozen 80% of the time or too hot/swollen the rest of the time. Its more rare tor men to get this his is much worse than mine I hope he gets good treatment.

I have this but much less severe. Reading some of these comments make me feel lucky. I constantly have burning feet and it flares up a lot at night. During the day, it's bearable but at night it feels like I have hot coals attached to my feet. I have to scrub my feet with soap and cold water before going to bed, stepping in clean sandals, and have a fan running on my feet so they can feel normal. Without my routine, I feel like it's so hard to sleep and I will keep waking up at night. My last resort is always medicine such as Aleve or aspirin.

What is this Drs. name and where is he/she located? I know you say it in the video, but I cannot understand what you are saying. Desperate!!! Thanks

Tengo 16 años y me han diagnosticado eritromellagia, mi vida ha cambiado completamente y sufrió cada día mucho, he pasado por una grave depresión y cada día lucho por algún día me encontrará mejor.

Have had this pain my whole life in my feet but recently got diagnosed with Erythromyelalgia. Was misdiagnosed with CRPS at first.

PLEASE HELP ME!! I think I have this on both sides of my face, ears, and neck. A couple of days ago, I went to my chest. It has been constant with no relief. I have MS and trigeminal neuralgia which is what my doctors are treating it for but I believe it’s this. So, I will have my dr do a genetic test.

I'm 68, female, and came home with EM after a class reunion that entailed more dancing and free alcohol than I'm used to. Once my husband and I got back to our hotel, I discovered that my feet were very bright red or actually a deep hot pink color, burning and swollen over the top in front of my ankles down toward my toes, but my toes were not swollen. I immediately rinsed them in cool water, but that did not help. However, as soon as I layed on my back with my feet straight up in the air, the color immediately began to gradually go back to their normal pale color. I tried to remain with my feet up like that for as long as possible but was already after midnight and after 45 minutes I had to go to sleep that night. I happen to already be Diabetic Type 2 and had experienced the burning sensation as a Diabetic Peripheral Neuropathy. I read up on EM myself, found there was so little known and therefore managed the redness and swelling myself over the next 2 weeks by avoiding sugar and keeping my feet elevated on pillows when I slept or in my free time. It returns when I'm out and about on my feet all day and my feet swell a little also. Luckily I'm either used to the burning sensation or my burning isn't as bad as some people experience. I'm bummed that it seems to be a relatively chronic condition with so little known about it, yet it seems manageable if I find time to elevate my feet.

I have EM in my feet for six years now. Burning mostly at night. I have ice "shoes" that I can wear which helps relieve some of the pain

Please, do you know where I can have my diagnosis confirmed? Your story and passion for helping others is amazing, and I'm glad you are better. Was a DNA test used to confirm the diagnosis? Who is the doctor or dept. at CentraCare? I'm at the end of my rope; my family doesn't care and my pain doctor has decided to send me to a psychologist to learn how to live with hands and feet on fire.

How often do you have to get the infusion?

i have it its horrible 😭😭😭😭

I've had it for 10yrs n have such a pain filled exhausting fearful existence that even when fell n broke bones it hasn't effected my life any worse.

My son who is just 7 years old now has been diagnosed with Primary EM. He has been under treatment for the last 1.5 years but there is no cure yet. He is just turned 7, he cries bitterly more often in a day and night. I am giving him medicines as advised by the doctor but he does not sleep at night. He was hospitalized twice recently and given pain killer and IVIG but nothing worked out for him. All the medicines which have been prescribed for this diagnosis are running currently but he does not have relief at all. His both feet and hands become very hot and he has very severe pain. Please help

Has anyone had any treatment that has helped with the redness as well as the pain?

i have it. It was undiagnosed for years. I thought it was athlettes foot whch wouldnt go away...i have found the best treatment that works for me is: low dose aprin plus lyrical. i also use aveeno cram which contains menthol as well as keeping my feet out from under duvet

If you experience tingling before your feet heat up it means your nerve ends are unable to function properly, therefore your blood vessels do not contract when they should. Bee venom, if injected very accurately, can stop the inflammation and stimulate nerve regeneration. But equally important is to protect your skin. If your skin has become permeable because the outer layer has been affected by chemicals or a lack of good bacteria, the inflammation inside your feet will not subside and your nerves will remain overstimulated and painful. So throw away your chemical liquid soap, shampoo, use 100% natural products instead and don't wash too often, just change your socks. Never use so called anti-bacterial soap, as this will destroy the skin's protection. Soak fine oatmeal in water, let it rest for an hour or so, then rub it onto your feet and let it stay there for 5 min. Do not rince with water, just use paper towels to clean, leaving a tiny layer of oatmeal on your skin. Repeat 3 times per day. Avoid swimming pools. Yes, my feet were on fire also. But not anymore. Hope this works for you, so that maybe you can avoid lidocaine, which causes permanent, irreversible nerve damage.

I had this from the age of 7 and it would be so painful I cried so much and the pain was seriously unbearable, i seriously wanted to amputate my feet. Luckly, I found ways to cope with it through doctors and myself.

I have brain erythromelalgia it is pain full and it is horrible

Je n ai pas ete dignostiquer mais les symptomes y ressemble j ai deja une spondylarthrite ca pourrais venir de la

I have it on my face and hands its fucking horrific

Chinese medicine has helped me tremendously herbs and acupuncture treatments. Can be expensive but lessens over time. Alcohol is a huge trigger so is caffeine. Any injury to the low spine may also be contributing to flares so very gentle yin and hatha yoga in a cool room helps. Avoid spine twisting poses. Set massage especially the front low part of the shins , very tender. Massaging knees before walking for a prolonged time and after. But acupuncture helps to relieve internal heat. Another technique is a cooling breath were you roll your tongue into a “taco shell” shape, and breathe thru your tongue like a straw. You will feel immediate internal coolness

I had this before I stoped eating sugar and ate meat and chicken too much and it disappeared slowly. you just need to wait it will not go quickly for me it took 6 months to go

What test is done for This?

I have this

was polycythemia vera considered?