What is Erythromelalgia?

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  • Опубликовано: 5 окт 2024

Комментарии • 102

  • @deverene8
    @deverene8 Год назад +8

    I haven’t worn shoes in 18 years because of this condition. The pain is unreal! I know they say to only soak in cold water 10 min then wait 2-3 hrs but I just can’t. I have a fan going on my feet at night, I also have a squirt bottle & I squirt them thru the night, I hang my feet off the side of the bed, can’t have sheets touching them, ever! I only take gabapentin for pain but it doesn’t help that much but when I put my feet in that cold water, it’s Heaven!! I just started seeing a rheumatologist at UCLA & we just found out I have a high red blood cell count, still waiting on a solid diagnosis. My life sucks, I have to schedule my life around these feet. 😩

    • @TipsInTens
      @TipsInTens 11 месяцев назад +1

      I feel you, suffering the same for 2 years now, started with ulceration even, unbearable pain, taking medicine to reduce the pain, made it bearable inside the house under a cold frozen AC 24/7
      But be hopeful, knowing why is the first step of full recovery.
      I hope you're better now ❤

    • @ZHP74
      @ZHP74 8 месяцев назад

      ​@@TipsInTensHello my friend, you suffer from this disease ❓ what are the exact symptoms ❓ I have redness and heat but it is not extreme

    • @iSheree
      @iSheree 5 месяцев назад +1

      My neurologist recently diagnosed me with EM. I can’t get any proper relief because I also have Raynauds and neuropathy with allodynia so the cold or things like fans also causes me pain. I don’t know what to do anymore. It is horrible.

  • @lmonnette4037
    @lmonnette4037 2 года назад +9

    Oh my gosh I am so happy to have found this!!!! Many years I have had this and at night my burning beet red feet have made sleep impossible! I am so glad I can show we this to my doctor.

    • @ZHP74
      @ZHP74 8 месяцев назад

      The pain is severe ❓ the redness is very red ❓

  • @michibmoon
    @michibmoon 2 года назад +13

    I have had this since I was a little child. It was sometimes so hard for me to sleep in the summer that I would keep waking up overnight with a burning sensation in my feet. It never got bad in the winter, only in the summer. The soles of my feet turn bright red and feel like I'm walking on hot coals. I have found that dirty feet make it much worse. Washing the feet and applying lotion before going to bed make it feel 10x better. I also sleep with a fan directed at my feet for good measure. It may be cold but I much rather be cold with a blanket than sleep with burning feet.
    I only recently realized how bad this is for me when I was at a water park recently. My friends and I were walking to and from various water slides in 95°F weather. They didn't walk with sandals and their feet were burning up. I had mine on but let my friend use them so she could walk okay. Walking on burning hot concrete felt better than when my feet are dirty at night. That realization was insane to me but I am so happy that I have a solution.

    • @DjFiyaFrost
      @DjFiyaFrost 2 года назад +1

      same here

    • @alinasir1834
      @alinasir1834 Год назад +2

      How do you deal with. My ears and face are affected and it gets worse in winter when i am under heavy blanket

    • @cbryce9243
      @cbryce9243 Год назад +1

      I didn't walk till I was much older. My mother said i was the laziest child she ever seen. She never noticed that my feet were burning. I went my whole life thinking everyone had sore feet, I was just a complainer. It was not until I was in my 50 did I get a diagnosis. Now I just wish I could have my feet amputated. I am so sick of the pain. I am sorry you have it too. I have many illnesses, but EM, It's just the most horrible.

    • @cbryce9243
      @cbryce9243 Год назад +2

      ​@@alinasir1834 1. Don't use heavy blankets. 2. Use a fan in the bedroom to keep air circulating. Maybe keep a tub of water and a washcloth in it to pat on your face and ears before bed. Warmth is your nemesis.
      There is an online EM group in the US, if you are interested, let me know and I will find a way to send you the information.

    • @ZHP74
      @ZHP74 8 месяцев назад

      ​@@cbryce9243Hello gentlemen, for 1 month I've had red feet that are hot, but I use cream and I drink an anti-inflammatory if it's too red and it calms me down a lot. I don't know if I have this Disease. What are the symptoms to be sure of being affected by this disease ❓ the pain is very strong ❓

  • @saviiskoopneck5327
    @saviiskoopneck5327 6 лет назад +14

    hey there my name is curtis and the reason i’m commenting on this is because a while back i gave my self the self diagnosis of this because when i was a child i remember going to the store with all of my family then almost half way there i get the burning and itching sensation in my hands and feet so badly to the point that my family had to turn around back home, now from that point on i don’t quite remember if i had any episodes in middle school but i do remember my reaction in high school, i would be having a great day and then i would get to my science class and in about 20-30 mins in the class my hands and feet would start to get itchy, hot red so i would go to the nurse and there was nothing she can do about it, this happened for a couple days straight, one of those days i just remember specifically because the burning and itching sensation was so bad that i couldn’t even stand on my feet, i had a firm grip on my feet just sitting there crying because f hurt so badly but then it got worse because i was holding it firmly, after a couple days went by it stopped, i told my mother this but she didn’t believe me and she told me that i don’t need to put labels on myself.... after that i just decided to google why my hands and feet were getting really red and really hot and really really itchy and this is what i found, now i don’t know if i have it because i never went to the doctor yet to confirm it but this is the only condition that explains what i’ve delt with, what do you think i should do?

    • @Nmccarville
      @Nmccarville 5 лет назад +3

      go to the Doctor I have it myself you will need to see a Nerve specialist an tell your Family doctor what you suspect it is he may have other suggestions. Advil works to a point but for quicker relief ( wont say it get rid of it entirely) Cannabis is great for pain Management... an grab some heavy duty zip lock bags fill them with water an put them in the fridge an when you get a intense flair up use one to put over the affected area but for no more then 5 minutes at a time. you are gunna have this for life so stay away from Opiod meds as you more then likely don't need to be hooked on those. I was given Duloxetine which does help for me your doctor will have to play around with your meds to get the right as their is no one medical golden key.

    • @invinciblegamer1059
      @invinciblegamer1059 3 года назад +2

      Did she put an ice pack?

    • @Rekico
      @Rekico 3 года назад +2

      I felt exactly the same in school and they never understood what I was trying to tell them because I didn’t get it. Even now at 33 when I explain the pain to people they shrug it off! I wish I had a cure or something to help this

    • @michibmoon
      @michibmoon 2 года назад +1

      Wow! You have it a lot worse than I do. That sucks to have it happen so randomly and intensely. My mom thought I was being over dramatic when I was little and literally could not sleep because my feet felt like they were on fire. Mine has a pattern to it though, only happening in the summer at night and when they're dirty. If you have flare ups that severely, do go to a doctor!

    • @elixier33
      @elixier33 Год назад +1

      You need a specialist in pain.. I wasn't diagnosed with this condition until I was 17 years old you won't have any chance getting a diagnosis from your doctor you need a pain specialist.

  • @LadyDuchess
    @LadyDuchess 4 года назад +12

    DO NOT SUBMERGE YOUR FEET IN ICE WATER FOR LONG PERIODS OF TIME!

  • @cbryce9243
    @cbryce9243 3 года назад +10

    whatever you do, do not soak in ice water! That is really bad advice. It will make your problems worse.

  • @Julia-ln5og
    @Julia-ln5og 3 года назад +25

    When I stand up my feet will suddenly turn red at random and are hot to the touch and tingly, sometimes they turn a pastel purple, it's barely noticeable though. It's never painful though and doesn't prevent me from walking. It's been happening since I was around 10 so I'm not sure if I have it.

    • @meganberry9085
      @meganberry9085 3 года назад

      this is what happens to me too

    • @teresaguedes7458
      @teresaguedes7458 3 года назад

      Hello, Julia. Never went to the doctor to find out what it is?

    • @teresaguedes7458
      @teresaguedes7458 3 года назад

      @@meganberry9085 Hello. Never went to the doctor to find out what it is?

    • @CheshyLARK
      @CheshyLARK 3 года назад +1

      Sounds like a combination of Erythromelalgia and Raynauds syndrome. This common to have them together. My feet used to go from red, hot, and swollen to almost zombie looking purple.

    • @cbryce9243
      @cbryce9243 Год назад +1

      @@CheshyLARK Yes, I have both. But the EM is very painful. I have to wonder if it is something else, and not EM. EM is all about the burning.

  • @sophiegriffin2050
    @sophiegriffin2050 4 года назад +4

    Dont have any diagnosis but ive been researching whats causing the random extreme burning in my feet and sometimes hands so im gonna have to ask my doctor about this

  • @Justhppy2behere
    @Justhppy2behere 4 года назад +7

    Mine happens on my cheeks... one cheek will start burning and get super hot to the touch out of no where and not even ice can cook it down. It’s been proven to not be rosacea and when I looked this up on the internet it looks exactly like pics of other peoples faces. I feel like I’m at a dead end because no doctor has been able to tell me what it is.

    • @Justhppy2behere
      @Justhppy2behere 4 года назад

      cool*

    • @FelixMT
      @FelixMT 2 года назад

      In this video ( ruclips.net/video/zYQW-xGjw38/видео.html ), they talk about how it this can happen in the ears/cheeks. It also says that most doctors don’t think of Erythromelalgia right away since it is rare and patients usually self diagnose.

    • @cbryce9243
      @cbryce9243 Год назад

      There are doctors who are familiar with EM, you just have to find out which ones. Keep looking! There is also a new Zoom group if interested.

    • @deverene8
      @deverene8 11 месяцев назад

      A Rheumatologist can give you a diagnosis!

  • @elixier33
    @elixier33 Год назад +3

    I have this condition and it's one of the most misunderstood conditions respect to pain.. my doctor is absolutely totally miffed apparently I should be taking paracetamol because that's going to take the pain away. I am now on oxycodone / OxyContin and a plethora of other painkillers most recent edition diazepam and baclofen.. this is a horrible condition IMy flat is fully air-conditioned but it basically stops me from going out in summer at all not without an enormous amount of painkillers it's really horrible.

    • @ZHP74
      @ZHP74 8 месяцев назад

      In winter you can go out ❓

  • @kuraiandkawaii6809
    @kuraiandkawaii6809 2 года назад +7

    I have both erythromelalgia and raynauds 😭

    • @radovanvico6908
      @radovanvico6908 2 года назад

      What is different between the Two, symtoms and sensations?

    • @jaminjohannashow
      @jaminjohannashow 2 года назад

      I do too for 13 yrs...wheelchair bound and in extreme pain. Stage 3 and type 2 crps and em. Got hurt by a chiropractor. Praying for you. We will get through this!

    • @ZHP74
      @ZHP74 8 месяцев назад

      ​@@jaminjohannashowstade 3 ?

    • @KatLovin
      @KatLovin 5 месяцев назад

      Same!

  • @tsukimusume
    @tsukimusume 6 дней назад

    hiya, I'm kind of just venting on here: I have erythromelalgia and raynauds and I'm 14, so when I hear in all these videos that it's commonly found in adults, I sit here, thinking about how much I have to write in school tomorrow with these swollen hands 😭

  • @tghooker5123
    @tghooker5123 3 года назад +8

    Cool water, oatmeal based lotion and wearing vinyl gloves have helped when my palms get hot and painful.

    • @foloz7475
      @foloz7475 3 года назад +3

      Why would vinyl gloves help? Wouldn’t they trap heat making your symptoms worse?

  • @nergal7236
    @nergal7236 4 года назад +4

    nice video thanks dude

  • @suhealya3489
    @suhealya3489 4 года назад +7

    I had spicy food and the bottom of my feet started burning

  • @sunxuejun1118
    @sunxuejun1118 4 года назад +3

    It can be really painful when I get a fever. Unable to walk and need to put my feet in the cold water all the time

  • @AdamPDFs
    @AdamPDFs 3 года назад +2

    I don’t feel pain but randomly my knee,feet,leg,ear,hands just gets hot and turns red it’s not life changing since it only happens once in a while but it does get annoying cause I just get hot

  • @reubes11
    @reubes11 4 месяца назад

    I stopped eating any processed food, or anything with vegetable oils. Just rice and fresh vegetabes or pasta. Even some pasta sauces have a lot of processed ingredients so now pay more to get the better quality more simple italian brands. Symptoms improved drastically over a couple of months and I could get off my pain medicine (cymbalta), although I still have some troubles.
    Before that I could never seem to correlate pain my diet, although I did usually notice immediate effects after eating chips/fries full of bad oils. It doesn't take much of the wrong food to set it off and cause issues for weeks afterwards so just eating healthy for a few days wasn't enough. I never believed diet could actually make such a big difference. Vegetable oil is in so many things that you wouldn't even suspect, basically 95% of the supermarket.

  • @CoeurD_Amaris22
    @CoeurD_Amaris22 2 года назад +4

    I believe this is what is happening with me. It started off with extreme swelling in my feet, all the way up to my knees with splotchy red and purple areas. It's since been progressively getting worse and its only been a few weeks. Now I experience the itchiness, burning and swelling in not just my feet and legs but in my hands and face too. That includes my lips. I do have several other auto immune diseases and have read that they could be linked to this. For those who have been officially diagnosed, what was the process please?

    • @AndriiPruskyi
      @AndriiPruskyi 9 месяцев назад

      omg, same

    • @ZHP74
      @ZHP74 8 месяцев назад

      ​@@AndriiPruskyiHello my friends you have Snapchat ❓

  • @Patrickbsfan2
    @Patrickbsfan2 Месяц назад

    People look at me like im nuts when i tell them about this. Ive experienced it for years. My pinky is burning itchy red and swollen as we speak

  • @itumelengmatuka9895
    @itumelengmatuka9895 2 года назад +2

    What causes the burning sensation, swelling and painful toes only at night, I've been experiencing that for the past 4 days and It is so uncomfortable I cannot sleep as the pain is just too much to bear

  • @alane4487
    @alane4487 4 года назад +5

    Just diagnosed w this

    • @ericahearn2574
      @ericahearn2574 3 года назад +2

      How was you diagnosed? Blood work?

  • @batbratsdesigns
    @batbratsdesigns 8 месяцев назад

    I have this. It can start suddenly and last for a few minutes or for hours and it returns until the trigger goes away. I have an autoimmune condition.

  • @cahetmclendon5564
    @cahetmclendon5564 4 года назад +3

    I really think I have this. Woke up this morning with my feet itching. I started to scratch them and it felt like instant fire. My boyfriend tried to rub cortizone cream on my feet and it just burned even worse. So I got up to walk into the living room to cool off and every step burned. I screamed in pain. This pain lasted for at least 30-45 minutes. I have episodes but they never lasted this long before. So I went to the ER and they told me I had hyperventilating syndrome. Which was a lie I never hyperventilated. I had a episode right in front of them and it didn’t change anything. So now I’m at my dr and hopefully they find out what I have I can’t even go to work because I can’t control this. I can bearly walk or hold anything and it sucks because I have a 3 month old son.

    • @88carold
      @88carold 3 года назад +1

      This is basically how mine started too. The itchiness is UNREAL

    • @michibmoon
      @michibmoon 2 года назад

      You may have tried this before but try a foot scrub. Use a different type of lotion and place your feet in front of a fan. Instant relief. Keep your feet clean because dirt will make them BURN.

  • @cynthialemus2591
    @cynthialemus2591 5 месяцев назад

    I have in my whole head, neck, shoulders, arms, hand, and feet. It's caused such damage in my eyes that one is now blind. It's year 13. I won't make it to 14.

    • @miracabral
      @miracabral 5 месяцев назад +1

      have you seen a doctor?? by your description it might be diabetes, you should go to a hospital ASAP!

  • @HipstyHeavener
    @HipstyHeavener 4 года назад +3

    I have this and it sucks. My hands puff up and get extremely itchy and burn.

    • @otx.hannah1814
      @otx.hannah1814 3 года назад

      My hand started burning after I showered maybe I have this but it hurts and when I make a fist it gets hotter

    • @foloz7475
      @foloz7475 3 года назад

      How do you hold a job with this condition?!?!

    • @HipstyHeavener
      @HipstyHeavener 3 года назад +2

      @@foloz7475 Mine always flairs up when I go from outside where it’s cold to inside where it’s warmer. Also when I’m standing in one place for too long.

  • @dutchdragon443
    @dutchdragon443 3 года назад +4

    I was diagnosed few weeks ago I got it in my hands real bad they turn red and feel like it on fire or holding on to hot rock it’s terrible

    • @lightningmcgeequeen8091
      @lightningmcgeequeen8091 3 года назад +2

      Hey do you think I could have this? It doesn't happen to often but sometimes my hands (sometimes just one, sometimes both) will turn red and burn and itch. They swell up pretty bad and if I scratch them(it's almost impossible not to, they itch so bad) they swell even more. I don't want to self diagnose but I also don't want to go to the doctor for something that isn't serious

    • @otx.hannah1814
      @otx.hannah1814 3 года назад +1

      @@lightningmcgeequeen8091 yea I’m on the same boat my hand started burning after I showered and when I was in the shower my hands felt weird like warm then it got hotter after and when I make a fist omg it burns more

    • @lightningmcgeequeen8091
      @lightningmcgeequeen8091 3 года назад

      @@otx.hannah1814 did it go away after the shower? Mine have never done that from showering, it's usually random for me but I hope you can figure out what's wrong with yours.

  • @chandansaloni
    @chandansaloni Год назад

    Well explained

  • @lulu_TheWitchBoy
    @lulu_TheWitchBoy 3 года назад +1

    Idk if I have this, had the red foot problem quite a long time. And my hand just started getting red. I would go to doctor but omg I just have a lot of health issues, it just sucks.

  • @aminah_-bz8hx
    @aminah_-bz8hx Год назад +1

    I’m suffering!

  • @CaffeinatedCutie
    @CaffeinatedCutie 3 месяца назад

    I have this but my extremities are cold all the time.

  • @sophiaaria
    @sophiaaria 4 года назад +2

    I have this but also my feet get super itchy when I get a flare up

    • @88carold
      @88carold 3 года назад +1

      I get super itchy too! It’s almost worse than the pain!

    • @IlIKRATOSIlI
      @IlIKRATOSIlI 2 года назад +1

      I know this is a year ago, but this is related to liver issues. The itching part.

  • @Shahzad-Khan
    @Shahzad-Khan Год назад

    Just take cold showers, check out Wim Hof. Be careful at first when plunging into the cold

  • @spirituallyawake5019
    @spirituallyawake5019 3 года назад

    Is it linked to ms ?

  • @gsujshjdkhbjdjhjkdj145
    @gsujshjdkhbjdjhjkdj145 3 года назад +2

    I had this before I stoped eating sugar and ate meat and chicken too much and it disappeared slowly. try it it will work but you have to wait for me it took 6 months to go

    • @simondeklerk7811
      @simondeklerk7811 2 года назад +2

      Please don't take this comment too seriously. This person maybe never had this, but they had something else instead, or it went away because of something else. If you really want to try it than you can do it, but it will probably not help.

    • @user-es4hy7tr7u
      @user-es4hy7tr7u Год назад

      Hold on! You minimised your intake of chicken and meat and it slowly went away? I believe I actually developed this condition due to Keto when I ate TOO much meat! So could there be a connection there?! My uric acid levels were also high which is a key indicator of poor kidney function/inadequate excretion hence the buildup of uric acid (foods that are highly rich in purines are meats!)

    • @user-es4hy7tr7u
      @user-es4hy7tr7u Год назад

      And for the record I too had a lot less flare up episodes when I went back to eating normal (carbs and meat alike) though I really have to watch my meat intake otherwise I start flaring up again. The only other thing that makes me flare is body heat, and my inner thermostat is whack! So I’m always overheated.

    • @littlewillowlinda
      @littlewillowlinda Месяц назад

      I’m a vegetarian and still have this lol

  • @pnwfisher2144
    @pnwfisher2144 4 года назад +2

    I have this. It is terrible.

    • @lisanewell9949
      @lisanewell9949 3 года назад

      I think I might have this. Was put on diuretics for swelling in legs anf feet.

    • @pnwfisher2144
      @pnwfisher2144 3 года назад

      @@lisanewell9949 Hopefully you don’t have it. I’m praying for you. You can do this man.

  • @iamnotblackjack
    @iamnotblackjack 3 года назад

    I don’t self diagnose but what if you get these but you don’t have visible burns? This is happening with me when I was 9, any Ideas?

  • @187lynne
    @187lynne 10 месяцев назад

    Mine are sweaty and hot like too wet not so red , I have to get new shoes every 3 months

  • @erythromelalgia3739
    @erythromelalgia3739 Год назад

    What I named my band after

  • @thatanimatorguy599
    @thatanimatorguy599 4 года назад +1

    Does this go away

    • @jaaybrokeaf2332
      @jaaybrokeaf2332 4 года назад +3

      i do have it. and sadly no.

    • @michibmoon
      @michibmoon 2 года назад

      I think it's an unfortunate thing to deal with 😔 I hope there can be a cooling solution one day

    • @lilcoke4069
      @lilcoke4069 2 года назад

      @@michibmoon I have no idea what I got. I think I have this on my hands and feet but I'm not sure. They also sweat so I thought it was hyperhidrosis but it's not. My hands get inflamed and hot to the touch and that's when they sweat. When it's cold they're pretty normal unless I move around but still not so bad compared to hotter weather. I have no idea what I have as I've tried to research this online so much. It's kinda depressing but I hope a dermatologist can help me out and find a solution.

    • @DjFiyaFrost
      @DjFiyaFrost 2 года назад

      sadly we are cursed to live like this with barely any hope.

    • @nathanwood5977
      @nathanwood5977 2 года назад

      @@lilcoke4069 did you have any joy? I'm wondering if its on the surface or vascular. I have varicose veins so I suspect it might by neurovascular (increased blood pressure). I don't know, I'm no doctor but it sucks.

  • @daisykim23
    @daisykim23 2 года назад

    So this is what i have....!!

  • @fatrat137
    @fatrat137 Год назад

    Lmfao well gadamn 😅 iv got this so extreme for decades I definitely don't need a doctor to verify. ..flip me I'm basically getting pretty close to gang green level
    CHEMOTHERAPY 😨 holly Idk I'm little crazy but I'd 1000% rather amputation like no question

    • @ZHP74
      @ZHP74 8 месяцев назад

      What are the symptoms ❓

  • @the-weetarted-fem
    @the-weetarted-fem 2 года назад +1

    My feet gets hot wen I am not even exerciseing