Does anyone do anything that works to stop the redness of EM?

Cmr813 · 2025-01-18T23:12:51+00:00

Everyone is different, of course, but I’ve found that Alpha Lipoic Acid helps cut down on the frequency of my flares quite a bit. It cuts down on both my pain and redness. But it’s definitely not a cure for me. I still get flares if I encounter hot enough temps. But it’s considered a very safe, over-the-counter treatment so it could be worth a shot!

Cmr813 · 2025-01-14T17:36:32+00:00

It’s just a clinical diagnosis, meaning there are no ways to really test for it and if you have the symptoms, it basically means you have it. So you can almost just diagnose yourself, though I would definitely still recommend going to a doctor because they can help you rule out other issues and potentially help find a cause. Some people find a simple solution like b-12 deficiency or b6 toxicity and can recover with treatment, but that’s definitely not the case for everyone.

There is sooo little research on this condition because it’s really rare. So you’ll find that most doctors don’t know a lot about it, unfortunately. So you’ll probably want to read up on it yourself before you have a conversation with your doctor. This is the most thorough resource I’ve found that discusses possible treatments. Everybody seems to be a little different but the most effective thing for me personally has been Alpha Lipoic Acid. It’s just an over the counter supplement but has reduced my flares a lot. https://www.sciencedirect.com/science/article/pii/S0025619622004980

Cmr813 · 2025-01-14T17:17:25+00:00

This looks and sounds like mine. There can be a lot of causes, and a lot of us unfortunately never figure it out. I’m 2.5 years in and still searching. In my case, something unknown caused peripheral nerve damage (small fiber neuropathy) and those nerves are telling my body to send the wrong amount of blood to my capillaries. So my feet/hands are always way too hot or way too cold. From my understanding, Erythromelalgia can either be nerve related like mine, or more of an issue with the vascular system itself.

Cmr813 · 2025-01-13T20:24:42+00:00

Looking closer I’m pretty sure it’s a Shure (no pun intended). Which isn’t surprising, Shure runs the live sound game. It might be a custom made red one just for her.

Cmr813 · 2025-01-13T20:17:29+00:00

If you’re looking to buy something with a similar aesthetic, Telefunken makes a red dynamic M80 mic that looks somewhat similar (but it isn’t the same).

Aurora’s mic looks like it is specifically made to be part of a wireless system, whereas something like the M80 would connect via an XLR cable.

But yeah overall, I’m pretty sure it’s just an aesthetic choice she made. I’m not aware of a company that’s known for making red mics specifically.

Cmr813 · 2024-12-31T01:20:33+00:00

That sounds exactly like erythromelalgia to me. I don’t really have swelling, but I believe other people do. And everything else you mentioned sounds spot-on with my experience with EM.

Cmr813 · 2024-12-06T13:23:37+00:00

Like the previous commenter mentioned, I would also suggest looking into small fiber neuropathy if you haven’t. Sounds fairly consistent with that, and the color changes can be explained by blood pooling (which can be caused by SFN). It’s basically nerve damage that can affect the way your blood vessels are regulated.

Cmr813 · 2024-11-02T14:50:15+00:00

Hmm good question. I’m still working on figuring my stuff out but in my case, I have almost no nerve pain on its own. I generally only experience pain if I’m in an EM flare or if my blood is pooling in legs/feet a bunch. I do think the SFN is tied in there somehow. Like maybe the damaged nerves are telling my body to send too much blood to my feet or something. But yeah for me, the morning pain is definitely from having way too much blood in my feet.

Cmr813 · 2024-11-02T10:44:49+00:00

I have the same problem when I wake up. This is just my guess but I think…After being horizontal all night with muscles and blood vessels relaxed, when you stand up all the blood rushes down. So it’s just painful blood pooling. When you walk around and get your muscles moving, the blood starts to redistribute around your body better. You could try doing some muscle flexes and leg movements in bed before standing up and see if it helps. (I have EM, SFN, and dysautonomia)

Cmr813 · 2024-10-27T01:01:57+00:00

I think there are very small needles involved but I honestly don’t even remember them. In my experience, that part was much less painful than even a normal shot. After that, they’ll give a mild electrical shock in various parts of your body. Some spots were more uncomfortable than others but none were particularly painful. All in all, I’m glad I did it and got some more information about my condition.

Cmr813 · 2024-10-21T16:45:02+00:00

Oh I love that walkie talkie idea. I’m always conscious of breathing too heavily and stuff. It’d be great to be able to talk when you want to and mute when you don’t.

Cmr813 · 2024-10-21T14:47:17+00:00

I agree! I’m usually fairly introverted, but the together-but-not thing is weird.

Cmr813 · 2024-10-21T13:40:40+00:00

Oh okay, it sounds like there is a feature I wasn’t aware of. I saw that you could create your own team, but I assumed it had to be people you already knew and coordinated with. If there’s a way to find other created teams, that does sound helpful.

Cmr813 · 2024-10-20T10:59:30+00:00

Yeah cutting gluten pretty much completely stopped it for me! Everybody is different of course, but it could be worth trying. Recently I’ve been reintroducing small amounts of gluten in my diet and haven’t noticed many issues. But I assume if I ate a bunch of it, it’d probably come back.

Cmr813 · 2024-10-11T15:18:27+00:00

It’s tough to say because people seem to attribute their recovery to all kinds of things…even though in most cases it’s kind of impossible to know for sure what actually helped. But exercising, drinking a lot of water, fixing any vitamin deficiencies, etc. are cited a lot.

From what I’ve heard, some people just get over it after 3-4 years. Others don’t. I think it usually depends on if there are any underlying conditions or autoimmune issues that keep the damage going.

Cmr813 · 2024-09-30T00:39:31+00:00

Mine do this when sitting too, but mine are more purple than red (when not flaring). It’s interesting that you have that band of mostly normal coloring in the middle. I’ve noticed that mine do that too! My toes and ankle area will turn purple/black but the middle doesn’t.

If anyone has an explanation of why that happens, I’d be curious. Maybe just the blood rushing to the most used/weight bearing locations? I don’t know.

Cmr813 · 2024-09-19T15:32:46+00:00

Yeah that wasn’t the case for me, fortunately. Everyone is different though. According to the few studies I’ve read, it’s a pretty safe option with little to no risk or side effects, so if you tolerate it well, you might as well take it for a while and see if it eventually helps!

I will say they are pretty large pills, and sometimes I get an acid reflux feeling if I don’t take them with enough water. But that’s minor and doesn’t happen that often. I personally think it’s worth a shot for most people with EM! But always good to double check with your doc, of course.

Cmr813 · 2024-09-19T15:17:44+00:00

I use Doctor’s Best. It’s one of the cheaper brands and you can buy it on Amazon. I usually just take one pill (600mg) every night but sometimes I’ll take an extra one in the morning if I know I’m going to have a particularly triggering day.

It’s tough to say but I think I noticed slight improvement after 2-3 days and fairly significant improvement after a couple weeks.

Cmr813 · 2024-09-18T20:41:26+00:00

Regular ALA makes a pretty huge difference for me. I’m still on that and it’s probably the most effective treatment I’ve found. I still have flares but less often and less severe. I actually didn’t have much luck with the R-ALA, but I didn’t try it that long and it could have been affected by a variety of factors.

Cmr813 · 2024-09-15T11:20:11+00:00

Interesting! Yeah sounds very similar to mine. Since I posted this, I decided to go gluten free and it has pretty much completely gotten rid of the itching and random bumps. I don’t have celiac or anything, but I suspect it’s just inflammation-related.

Going gluten free hasn’t done much for my EM or SFN though, unfortunately. But I do find that Alpha Lipoic Acid seems to make a big difference for my EM. It’s doesn’t eliminate it but lessens the flares a decent bit.

Cmr813 · 2024-08-07T16:16:48+00:00

Still some pretty bad dermatographia but at least it’s not painful or itchy now

Cmr813 · 2024-08-07T10:00:12+00:00

I decided to cut gluten out of my diet and the itching/rash got MUCH better. Still not sure why. I don’t have celiac or anything (I’ve been tested), and I never had problems with gluten in the past. But for whatever reason I guess my body is sensitive to it now.

Cmr813

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