Hi. I have recently had issues and posted it on this app and people have said it sounds like this condition. I get severe burning sensation in my face, ears, feet, and sometimes hands. Along with burning they go read and painful. I asked my DR about this condition. They said it was to rare for me to have (don't see how that matters) but sounds like the condition. Does anyone have any ideas?
(Another question if you are suspected to have this condition how long does a diagnosis take?
Thank you. ❤️
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I’m EvaJo and I live across the pond in Michigan USA.
Erythromylalgia is a rare condition. Not every doctor/nurse practitioner has heard of it let alone seen a case of it. So depending on where you live it might even be dismissed as you are lying imagining or just plain crazy have been all the responses I’ve experienced in my quest of 6 + decades to get diagnosed as mine is inherited. My diagnosis finally came via double DNA testing.
Mine is complicated by Raynauds Phenomenon which my dad has also just in his hands while mine is all over at times.
During my childhood I could tell you accurately when storms were approaching and their severity by how severely my feet swelled turned firey red and so painful I couldn’t stand or walk on them due to intense pain.
Weather is a big trigger as are stress illness increased activities insomnia and too much of anything. In my case with inherited EM salt/sodium intake triggers big flares. It’s a nightmare to find no to low sodium food during this pandemic. I must also take into account sodium levels in my drinking water and my meds and skin applications.
My IEM started to progress age 19. I was a newlywed and my hubby was drafted into the Army for the Viet Nam war. I suddenly became so hot had difficulty breathing that I stepped outside in subzero weather to cool off and aid my lungs in just my lightweight clothes without Winter gear. Stress levels rocketed off into outer space as you can imagine because most Army infantrymen were killed at that time. I do believe this was the catalyst for my IEM to go into relentless progression.
Now I’ll be 70 in April and it’s Winter time with temps below freezing once again and I’m barefoot almost all of the time indoors because my feet are on fire 🔥 and swollen.
I went through a long time period where I would get hot all over and just my nose would turn bright red. I used to tell those I encountered I was Rudolph the Red Nosed Reindeer’s sister to help ease any tensions others might feel.
Now this is my story. Because we all are uniquely created no two experiences will be the same. But these conditions are very rare which is why your doctor made that comment to you.
Neuropathy can also cause red burning painful symptoms too.
I have multiple overlapping conditions that cause my IEM/Raynauds Phenomenon and Neuropathy symptoms to magnify. This all has led to what I call painsomnia. Pain so intense I don’t sleep much or well.
Do you have other symptoms/conditions too?
Sorry if my story is overwhelming. It certainly is to me too as I currently have 61 diagnoses and 3pending.
Thats great thank you. The I have a heart condition under investigation, because of this i have to intake more salt to help it, so that doesn't help the situation. I find triggers can be if i go into changing temps, stress, and sometimes it is just random. It can become difficult to walk because of the pain and burning (can feel like walking on hot coal, or just severe indescribable pain) but I don't know what to do or hot to help as no doctor is taking it to seriously.
Hi again. Soooo sorry about your heart issues. I have Ehlers Danlos which as caused Mitral valve prolapse or let’s re oxygenated blood backflow. I’m a mess. Walking is an activity which caused increased blood flow and heat in EM.
I was prescribed lidocaine ointment for my feet. It worked at first but the ointment trapped the heat in for me. I switched to Aspercreme with lidocaine which is helpful to me. You can ask your chemist for a comparable product if in UK.
Ok that sounds great il look in the chemists. I was tested for the same condition but luckily I was just server hyper mobile. Im also a mess yet I'm still under 18. 😂
Oh my sweetie. I have had health problems all my life and like you it started mounding.
I’m soooo sorry you are suffering and so young.
I’m here for you to ask questions or just talk about your experiences.
I’m losing my eyesight so I have problems reading some days. I never intentionally ignore replies. Some days brain fog will prevent following through with chats well intended. Just repeat the contact if you don’t mind.
With your hyper mobile be sure to be careful if you sustain injuries due to it. Long story short through no fault of my own I couldn’t stay off of a severely twisted ankle and had to walk a few miles on it. Caused lifelong weakness easy re twisting injuries and now frayed and torn ligaments and tendons.
Dear honeybugSorry to read this of your sufferings 🙏 but Thankyou for writing here as it does help others 😍 I got a message this morning saying this community was closing but I don’t know if just to me, or closing 🤷♀️
I get so hot even when cold I haven’t had a jumper on now for years and it’s hard when family are cold and put heating on and I go outside to cool. When it’s been bad and feet , hands ears and nose red burning I only had photos to show neuro as pandemic but he thought erythromelalgia and said he had experience of this but dermy would need to diagnose. By time I see dermy the flare had gone and she said no nothing there. I love your Rudolph explanation 😍 .
You deal with so much personally yet there for others and always informative too 🙏🙏🙌🏻😘🤗xx
I saw you posted in the Action On Pain forum back in August. The symptoms you describe could very definitely be caused by a thyroid issue, so you need to describe those symptoms to the doctor as well, to explain why you want your thyroid tested.And, many people with Erythromelalgia also have thyroid issues so it's important to get this info over to your doctor.
Don't be fobbed off. Be persistent. If you can, take someone with you to the appointment as this often makes the doctor listen and take more note of what you're saying. (I realise a companion may be difficult during this pandemic of course).
Good luck, and come back here to let us know how you got on.
Hi there. I have EM secondary to my Vasculitis. I was pushed around the NHS requiring 21 referrals before I got proper tests and an understanding about what was going on. You can cut through that by asking yr GP to refer you to Prof David Bennett at the John Radcliffe hospital. He will give you a genetic test to determine if it is primary or secondary EM and you can go from there. Good luck
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