It is good to talk to other people on here who have the same pain and the same symptoms and deal with unbearable circumstances because of it. People just don’t Understand erythromelalgia And how intense the pain is and how debilitating and life-changing it is. But I’m finding it a blessing to find out people like me who also suffer, somehow it helps to know that someone understands your pain. Like I said, I wish it was visible for everyone to see it. I don’t want to spend my day on the couch icing and elevating. I want to be out in nature and birdwatching, not laying on the couch. I get some good books on CD from the library, well my sister goes and gets them for me, I cannot even walk into the library, and I listen to the books on tape while I’m on the couch and it helps to distract me from the pain. Lately I am into Amish books, which somehow gives me some sense of peace. Or some books are murder mysteries which keep me intent on the book so that I am not thinking of the pain so much and thinking of my list of things to do that keeps piling up. I try to pick one thing to do every day, just cleaning one toilet, or mopping one floor, or vacuuming part of a carpet room. And then I think of my accomplishment ever, at least I did something for the day. And my cat is so entertaining, and I have to take care of her, and this also helps me to stay focused. my sister takes me to church and We only stay for 45 minutes because I cannot stand it any longer than that, but I wonder how much longer I can just do that much. With me, it is not flareups because the pain starts as soon as I get out of bed. The pain is whenever my feet are lower than my heart, and other words whenever I am standing or sitting the ramps up And gets worse as the day goes on. Mine is every day from the time I get up till what time I go to bed.

Were they able to do anything different for you while you were in the hospital? How did they treat Your flare up? Are you taking any medicines or treatments that work? Yes, it is frustrating when other people just don’t understand. Maybe if you showed your partner some of the other peoples posts here, then your partner would understand better, because they would see that there are many other people just like you who have horrible symptoms and who deal with devastating pain.

Ive had to explain to several doctors, the funny thing about paralysis is that it can be parylyzing 😭. Telling someone to do exercise because that works for a well person may be like telling someone without the right levels of insulin to eat sugar anyways....

There are so many important substances made in the dendrites, and if for some reason they get damaged, these neurotransmitters may not get made through other pathways. GABA for instance. People exercise to increase gaba, but if the body has reduced gaba production then excercise might cause complications....
In fact it often makes my body tense up, until I take gaba orally. Stretching can worsen the problem, unless I take the gaba. Gaba releases the muscle spasm. Please seek medical attention before self treating, just giving an example of known necessary neurotransmitter made in dendrites but not usually adressed by medical treatments. Would be like denying a diabetic insulin and feeding the sugar. Or like knowing there's a thyroid issue but not replacing the thyroid hormones....
It's a malfunction in production. There's many more examples, and they need to be treated.

I have been diagnosed with MS. But have gamut of autoimmune issues.
Good luck, and blessings