Grace,
I am young, 24, and although EM had a big impact on my life for around the first 6-9 months (started 2/2018, first medication I found that helped was 10/2018). I was able to find medications and herbs (cyproheptadine, propranolol, and mexiletine) that help drastically reduce the symptoms in my feet and caused the symptoms in my hands and ears to completely disappear. I have very gradually been improving over the past 7 months or so and plan to attend medical school starting in August and have no intention of taking disability during it. I still have a limit on walking, I tend to have minor flares if I walk in heat for more than an hour or so but the symptoms subside very quickly if I sit down for a few minutes. But I can take hot showers now with no change in skin color, sleep with down covers every night, workout regularly, and wear crew socks and shoes daily. Things are improving each month or so. It is slow but over time it’s been very significant.
Although I really appreciate this forum for what it is, take everything you hear with a grain of salt, especially the negative stories. A lot of people here are self diagnosed and could in fact have something completely different than EM that manifests with a similar symptom complex but has a very different cause.
What helped me a lot was believing that there was treatments out there that could help me. If I had any advice it would be to find a good doctor who can 1. diagnose you and 2. is willing to safely try stuff with you. There are some great cumulative review papers (I posted one awhile ago and then http://www.medicationsense.com/erythromelalgia.html has some) and guides out there to navigate the treatment process. Ruling out serious secondary stuff is a great first step and then just slowly chip away at it. Over time, you should find stuff that helps but it may take awhile. I got lucky, I tried cyproheptadine out of the blue and it helps me a lot. And I’ve gone from there and found 2 more medications that help me a lot. Just be patient and diligent and everything you try, have a reason to do so and take note of it. I have tried medications that made me worse but after stopping my symptoms improved again. It does get better and this forum tends to have the most severe and refractory cases. The doctor I see treats quite a bit of EM patients so it seems to be more common than it appears at first.
I should also add that exercising regularly seems to help reduce my symptoms. I am not sure why that is but it is noticeable. So maybe trying to find ways to exercise, swimming and biking are easily tolerated, it might be worth a shot. Good for the mental health as well.