Why do people take medications for EM? Pain or redness?

I think that i have EM, but have absolutelly no pain. The only thing is that my foot gets hot/red if my body temperature is hot, and my veins gets enlarged. My toes are also a bit red, but no pain.

Why do people take medications for EM? Is it because of the pain or redness?

Your questions are repetitive and nearing spam territory. People with EM are not taking medications for cosmetic reasons.

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Why do they take it then? Because the foot get hot?

Because the erythema associated with erythromelalgia is uncomfortable (re: painful).

But what if u have erythema associated with heat, but NO PAIN. The heat makes it uncomfortable, but its not painful at all.

Is this something people should take medication for?

Thats the case for me, heat/red toes/a bit enlarged veins, but its not painful at all. So i am unsure if i should take any medication or so. (Am not 100% sure I have EM tho).

I don’t think your observations or questions are inappropriate. My condition is similar; in that I get red hands and red toes/bottom of feet and there’s a warmth and discomfort. I would NOT characterize it as pain. Many people get unbearable pain and they seek medication for it. I try to manage the condition by elevation, removing shoes socks, etc. I also seem to have Raynauds which is a sensitivity to cold. Sometimes I can go from cold, white fingers and feet to warm hands/feet in the matter of a few hours.

How do u get it? Only when the temperature is high? Or during workoutsessions to?

I get red hands/feet when temperature is high. Also when sleeping under
comforter and blanket. I’ll have to remove comforter during night, sometimes

I have to pull covers up to expose my feet, so they can cool down. Once I get

out of bed, it helps moving around barefoot.

Exercising is sometimes problematic, in a warm gym. I take walks late at night

when it cools down.

Mike

It doesn’t really make a difference . Uncomfortable or pain is a good enough reason to seek meds. No one wants to be in pain or uncomfortable. Early treatment is better than to wait untill u have ice packs strapped to your feet. If something seems off with your body then go seek help. EM is classified as red painful extremities with localized increase in skin temp. There are other syndromes which could cause red feet.

I can only speak to my situation of alternating Raynaud’s and EM symptoms.
I would rather try to manage the “in between” situation of being not too warm

and not too cold. It doesn’t seem the medical profession has an explanation

of this phenomenon and lacks a suitable medication treatment. I don’t want

to be a guinea pig for the various meds people are taking for this condition.

However, if someone is incapacitated by these symptoms, I don’t blame them

for seeking treatment. I hope they find some relief.

You can get checked for under lying problems first. Autonomic function

Rhuemy hematology ect. That’s what I did .

Hi Will, Thanks for your suggestions. I’ve been checked for underlying conditions
by a rheumatologist and referred to a neurologist at Stanford Med Center. All tests

negative except for low sweat gland function. By how do you explain Raynauds?

I knew more about Raynauds than the Stanford neurologist. I believe the two

conditions are linked by the same underlying mechanism. It seems many people

who have EM symptoms seem to have Raynauds symptoms. So when the med

profession acknowledges this link, I’ll refrain from meds.

Believe it or not most people with Em don’t have any other coexisting disease proccesses and in 80 percent of people from the study group the EM is idiopathic. Do u have symptoms anywhere else. Ears? Hands?

Is ur Raynauds painful?

When did you first notice red feet. Many people with EM do not recognize becuase in the beginning they are so intermittent and mild . That’s is how t was for me . Then a switch flipped and I had symtoms all the time . Sounds like you did all the right things . Nuerology may be worth a shot . I think being proactive is the best thing you can do . If you truly have EM the symtoms could stay mild for years or even decades so stay optimistic about the future. Mayo Clinic protocol is below

Step 1

Aspirin 325mg x1 daily

Compounded cream

If no improvement they discontinue the above

they then try various meds . The list is long but

Nerve pain meds

Calcium or beta blockers

Anti siezure meds

Sodium blockers

Anti depressants

Ect

But like you said most people are treating pain. I could care less if my feet look like tomatoes . As long as they don’t hurt I would be thrilled .

How old are u .

How long have u had these symptoms for?

How long(months, years) did it take for u, from mild symptoms to pain?

I definitely had some small symtoms in my hands and feet for a few years . I can even remember in high school occasionally getting red ears. It’s hard to say if that was the beginning or not. I would say over the last five years I probly had symtoms. And I had no clue . Never thought anything of it. It was only the last two years I really noticed my hands just seemed sensitive. Then after a ankle injury my EM got worse and I started getting symtoms every day on and off all day . If you take 100 people with EM some will get better some will get worse some will stay the same and some will loose all symtoms . Most people on the forum are not doing well. The people online are looking for answers and options. The people with EM that are doing well don’t have any reason to go and search for help. I’m doing ok and can still work but I have seen a increase in symptoms since spring hit . I just started taking meds in April . Im trying a few things and just found some doctors who seem to be somewhat experienced. I work In medical field and have access to good docs and a medical library. You em may never get worse . To make the diagnoses Mayo Clinic says

Red

Painful

Increase in skin temp.

Aggravated by warmth exercise or pressure and relieve by elevation or cooling .

One of the primary symptoms of EM is the burning pain. If you have not done so, see your pcp regarding your redness, it could be anything.

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Thats not true.

So u are saying that everyone starts with pain on their EM?

This is the definition I found:

Erythromelalgia is a condition characterized by episodes of pain, redness, and swelling in various parts of the body, particularly the hands and feet. These episodes are usually triggered by increased body temperature, which may be caused by exercise or entering a warm room.

I sure hope you do not have this, it really is painful.

MANY have EM with no pain.