painful, burning, swollen fingers & toes | treatments | cure | erythromelalgia | Raynaud's

A dermatologist diagnosed me with erythromelalgia over a year ago, and a podiatrist diagnosed me with Raynaud’s disease this month, both of which are related, with no known consistently proven cure. They are vascular, neurological conditions where the extremities get chocked off from blood flow. Erythromelalgia and Raynaud’s can attack anyone, at any time, due to hundreds of causes, which is probably why people have to suffer with it.

What causes erythromelalgia and Raynaud’s:
After extensive research, I found that the inactive ingredients in my fast-acting insulin (I have Type-1 diabetes), sodium phosphate, metacrescol and phenol, cause serious damage. “Sodium phosphate can cause serious kidney damage and possibly death” (1). Metacrescol is a phenol and phenols are poisons that lead to cell death and necrosis (2). I have diabetic peripheral neuropathy too.
Medications have been shown to cause erythromelalgia and Raynaud’s. My podiatrist uses phenol to deaden (kill) nerves!

The original request was for the inhaled insulin was denied by my insurance company, so my doctor has to put in a rebuttal and a second request with a detailed explanation with proof that I have negative side effects from the insulins I’ve been taking. Alfressa is expensive so that’s probably why it’s not widely used and why insurance companies don’t want to cover it.

A few weeks after I stopped taking my insulin, the extreme pain went away in my fingers and toes. I no longer use ice packs on my fingers or toes. I can take long walks, eat salt and spices (not a lot, but a little). I can now taker warmer showers, and can lay in the sun, as long as my hands and feet covered.

My understanding is that I no longer have erythromelalgia, but the damage from the medications I’ve been taking may be irreversible, so I’m dealing with Raynaud’s symptoms. All the treatments I used for erythromelalgia, except for the ice packs, I use for Raynaud’s, which does help. If there is a way you can lower the amount of medication you can take, find a less toxic medication, or eliminate medication altogether with diet, exercise and wholistic means, do it now, before it’s too late.
I’m going to keep researching, get more tests, and try new methods to heal my body. I’m not giving up. I’ll keep you posted.

[lmonnette]

Thank God I finally found out what this is!!! I have been miserable for years with this!

[etkktns]

Been to 3 different doctors and no one could tell me what was going on. 5 minutes on youtube and I diagnosed myself.

[danielstanway]

I have tried so many things. I have had some success. Been though too much to list. Got frostbite in the hospital as they were trying to figure out my condition. Type 1, em, frostbite neuropathy.
If you are reading this stay strong out there 🙏

[dougcoleburn]

Very great info as always! Hope this helps some people out. Hope you’re doing well.

[Vansondsd]

Great you managed to get on top of the condition.

[bellanebraska]

Went to my 4th doctor for this condition today, she says “ I suspect erythromalagia and raynaud’s” I’m glad to be close to getting answers but quite discouraged with the lack of cures and/or treatment options. Best of luck to everyone searching for answers. 👋🏻

[slxmpp]

hey thanks for the vid, im 16 and i started getting sympoms of erythromelalgia in may 2020 when the pandemic started and was diagnosed with it on october. I don’t have diabetes and i don’t take medications. the only thing that triggers my erythromelagia is when my body temperature goes up. this video really gave me hope thank you!! i don’t know if this helps but i think the more u condition your body to the triggers the better it gets ??? i was walking around downtown miami last weekend and it was getting really bad but i always cary a bag of ice everywhere i go so i was putting ice all over my body but then my triggers went away all of a sudden and i was fine for the rest of the day, i truly thought i didn’t have erythromelalgia but i thought wrong. even though i still have it i can withstand heat way more. i can sleep without the ac on now and if i get hot it won’t happen. it only happens when i walk outside and walk around in the sun or when i’m really hot. i don’t know if that’s a good thing or a bad thing but i just thought i should share this with my journey of figuring out what’s causing my eryrhomelalgia.

[ShowMeWhatINeedToKnow]

I've been extreme low carb for 4 years now but it, unfortunately, hasn't helped my EM too much. Also been though multiple, multi-thousand-dollar detox programs, which didn't help either. EM has mostly destroyed my life and my health through lack of sleep

[NYS]

Can it happen on tha face also? Cause I had neurogenic rosacea, but the pain hot burning was so intense and unbearable that made can't function now. It's burn on face, neck and ear also.

[samanthaellingsworthshows]

Have you heard of MCAS? Mast cell activation syndrome? It can cause EM and many other symptoms.

[PoliticallyIncorrect__]

I don’t have pain or swelling, I have burning sensation that started in my feet few weeks ago. 2 days ago I had a bad flare and couldn’t sleep the whole night because of the burning sensation. It was in my hands and arms and feet and legs below knees. I don’t know what’s going on.

[cloxdycoco]

my 2nd toe is super swollen and I think its from Birkenstocks sandals and it hurts so bad I cant even sleep at night and now it's happening to the other one too

[sealishshorts]

I mean you say you are type 1 diabetic, so then you dont have erythromelalgia, you have diabetic neuropathy..

[nathanwood]

Could just be crappy genes, don't beat yourself up.

[Roscoesadie]

Sitting in that stupid position is pissing me off