Ryan Junes - Erythromelalgia
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- Опубліковано 8 вер 2024
- "I just wanted to end it all." -- These are the sober words of 18-year-old Ryan Junes who suffered from a debilitating and extremely rare condition called Erythromelalgia, or man on fire disease.
Fortunately for him, along with a persistent mom who did a lot of research, there was a doctor willing to do a little-known treatment - a lidocaine infusion - that gave Ryan back his life. Now, symptom-free, he once again can pursue his dream of becoming a nurse and attend college this fall.
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!
Me too
I am 23 and I have it in my face really bad!! So happy to see these videos that recognize attention to it!!
How u managing? I also have it on the face hands and feet
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 UA-cam 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?
Agree, way more people have this than doctors know. I complained to doctors that I had pain in my fingers and feet for 2 years. Eventually they did blood test and found out I had essential thrombocythemia, a blood cancer. I think if anyone is suffering from erythromelalia then they should get a full blood count as it appears to develop from underlying problems relating to the blood.
@@truthbtoldwright6411 hmm i will look into that dang thats scary
I've had this condition for 3 years and have never been diagnosed. Just because doctors don't know what it is and are clueless about how to treat it, doesn't mean it doesn't exist. My doctor saw my red feet and said it must be old age or "thinning skin".
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’ve been having this to a less severe extent as well but it has still been affecting my daily life - showers and exercise are annoying and I often have to take my shoes off. Feet are always red and hot. I’m 15 and I hope it goes away - it doesn’t feel permanent
@@jojo5591 Question.....red and hot but with pain? I'm 34 and just a couple of weeks ago my hands started to be very red and bit hot but not pain at all
The pain for me is random and often makes me tear up
Stay strong 💪 I know what you're going through EM sucks
i have it to. somthing i do is putting ice watter cloths on the parts that its hot. its horrable
It sucks I have it as well it really sucks
@samuel my hands not my ears
Stay away from the ice. You DO NOT want to get frostbite.
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.
My sister said she didn’t do that because she heard from too many people that soaking her feet in cold water could lead to additional damage and even gangrene.
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
Same
How u doing now I also got it at 16 now I'm 18 and still have it
I understand!!! I know the pain!! I know the frustration!! Heck, so many doctors haven’t even heard of EM!!
Only those of us with EM truly know the brutal pain! I wish I had words of wisdom to help! I’m 57, and all I can say is don’t give up!! Don’t ever give up!! Blessings, and take care!
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.
Im only ok between 68 and 72 degrees it seems otherwise too hot or too cold
I have the same EM then back n forth burning palms & soles in the winter triggering Raynauds. It's either pain from fire feel8ng or frost bite. I believe mine was triggered from C-19.
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 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.
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 am sorry, but I do not believe this is as rare as western medicine is saying.
I agree. There’s two types of one is genetic and is rare. The other is secondary. Caused by some other unknown condition or auto immune disease. But it presents the same symptoms. It’s not rare!
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.
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.
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
Same
@@frankszalony9940hello Did you find any medicine?
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 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
I need to look unto those shoes. Night time is the worst with burning & pain. I slap tons of muscle rub cream on mine just to spread the uncomfortable stinging toes sensation . Plus the menthol in the cream helps create a cool sensation. Cold works the best but I have to watch out because I now get all of a sudden freezing dead cold hands & feet that only shows up as patches on palms & soles but it burns just like frostbite. I tend to only get that Raynauds Phenomenon in the winter.
Crazy....... fire & dead cold so frustrating.
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.
Have had this pain my whole life in my feet but recently got diagnosed with Erythromyelalgia. Was misdiagnosed with CRPS at first.
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.
There are two types of erythromelalgia: primary and secondary. Primary can be confirmed by a genetic test, but secondary is usually caused by an underlying cause, such as diabetes or injury, and is confirmed by ruling other things out. The only hospital I have found in the US that performs the continuous lidocaine infusion is Stanford Hospital in California.
Mayo Clinic, Minnesota's dermatology department can help you. Highly recommended. Hope you find the help you need.
I’ve had for at least seven years , both feet . Multiple doctors , multiple trials with drugs . It seems to be for me neurovascular . The only thing that helps is cooling and elevation. Walking or standing is extremely painful
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.
I have it too. I completely understand how you feel. Just home from the hospital after a hideous swollen flare. 10 plus pain every day sucks the joy out of life and no one understands (except those of us unlucky enough to have this painful, debilitating condition). ❤
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.
How often do you have to get the infusion?
i have it its horrible 😭😭😭😭
TaniaSinger my husband has it and he is barely able to function.😢
same here, but lidocaine like they mentioned in the video, does absolutely nothing for me.
I have Erythromelalgia and Small Fibre Neuropathy and between the two of them they have left me unable to function in so many ways. I used to be so active and work so hard, but they have restricted a great deal. However, I am still able to look after my children and that's ultimately the most important thing. I suspect I will need more care and support in the near future, but I should still be able to look after them.
Jordyn Caughie I have Iloprost infusions. I'm not convinced they do much, but some sufferers of Erythromelalgia say they get some benefits.
Same😨
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.
What are the solutions?
My 13yr old is going through this. What did the doctor's recommend?
My sister had her feet amputated due to this. That is the only solution she found.
@@AlexiHolford You tell the truth ❓
@@ZHP74 yes. I have photos of you want to see.
I have it on my face and hands its fucking horrific
Me also
@@cleocatra9324 hope u can learn to deal with it seriously good luck if u need any tips just ask me
@@dougleakh9330 do you think being in a stable climate is ideal? Mines worse in winter.
@@cleocatra9324 same when it's winter my hands swell alot more. I recommend staying warm when outside and keep a stable temperature autumn and spring are the best months for me
@@dougleakh9330 I just bought 2 pairs of good gloves and some socks. Where I work is maybe 60 degrees but I’m frozen all day. Then when i get home my hands feel too warm and swelled up.
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
I do all these too, except I take gabapentin instead of Lyrica. Lyrica caused extreme sleepiness even when driving, scary. I also have Lidocaine cream. Helps, the cool water soaks also. No ice involved.
@@dawnmarieslover4387 Does the gabapentin work for you?
@@nelnomedelpadre Hello, It does help a bit. Sometimes nothing helps as you must know. I found some cooling burn spray to at Walgreens. Green can, helps when it really flares for a long time. Hope you find relief and hang in there..
@@dawnmarieslover4387 Thanks for your quick reply! im from the Netherlands so i dont really know what that has to be the green can at Walgreens. Do you have the problems in your hands and feet aswell as in the face? Mine are burning and turning really red when its hot... I started Gabapentin last week hope it works.
@@nelnomedelpadre Ohhh ok. Look for cooling burn spray. Like for a sunburn on your skin. So far only a bit of red on my cheeks but no burning. Hands are good so far. I sure hope you find relief. This is so hard to deal with especially at night for me. Try to stay cool, in cool air. Winter was hard for me as our home is warmer then. Was so glad to have air-conditioning on finally. Now in the 30's again at night lol. It figures huh! Take care and write anytime ok.
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.
None of that sounds "right" to me.
1)bee stings cause histamine release which dialates the blood vessels & can cause allergic reaction/anaphylaxis.
2) you do want to wash area with mild soap, but thoroughly moisturize skin as it will be prone to drying out with all the heat it produces & cool water compresses to constrict the blood vessels during a flare. I have to ask each of you, what were you doing/feeling right before the flare. Know your triggers so you can prevent them!❤🌈🦋
@@lindalavino1279 ...you should google bee venom and nerve damage as medical pages verify what he said...."This gives bee venom the ability to travel along the neural pathways from the spine to various trigger points and injured areas to help repair nerve damage and restore mobility"
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?
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
What test is done for This?
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
I have brain erythromelalgia it is pain full and it is horrible
what?
I have this
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
Overall, step for step, what did you do to get your pain/heat/discomfort under control?
@@Finaltouchone1 just start eating high protein food like meat fish egg and stop sugar you will see a big difference in 3 months
My sister has a genetic mutation. That does not help her.
I stopped eating all vegetable and seed oils, basicallly all processed food. But the difference is unbelievable even though it's not gone it's much easier to live with and stop most meds
Je n ai pas ete dignostiquer mais les symptomes y ressemble j ai deja une spondylarthrite ca pourrais venir de la
was polycythemia vera considered?