Terrified of erythromelalgia-like symptoms

I've seen people say sometimes only their left foot flares up and then sometimes only the right, would definitely suggest nerve damage is not the root in their case. I've never experienced this myself, I have had instances where both hands flare but only one hand burns even though they both look the same. Inconsistency is a good omen. The only real change I've seen since it all started was the burning tingling sensation in my toes/feet at night in bed completely disappeared last year for no reason.

 

Yeah tbh this change was gradual enough I kiiinda didn't fully take stock of it till today but while both will go a bit red from hot water or something, a flare from walking only effects the right now... or at least effects it 10x more where I don't even notice the left in comparison, which is definitely odd. I also haven't really been doing well from the TMS perspective either (I've been pretty stressed, afraid, fearful of it, etc.) so no clue what sparked the change!

 

I think you'll get over the fear of it eventually, I was stricken by it the first year, but I gradually got used to it and at the same time focused my attention on activity and hobbies. I was probably most afraid of my life being over, but I've found theres still plenty to live for, even if life is changed.

 

Maybe you oughta start a new thread for your updates and get that word Terrified out of the thread title, or see if a mod can edit it lol. Kind of freaks me out sometimes too.

 

If a mod can edit it, sure thing - I posted it because at the time I was pretty strung-out and dealing with major s-word ideation, which I unfortunately still often am regarding this, but yeah I should have better considered how it would effect people, so I'm sorry. I'm not sure how to ping the mods but if the thread title can be changed to just "Dealing with erythromelalgia-like symptoms" that would be appreciated, or else I will just make a new thread. Tbf I'm not updating here very often though, because I feel like it's annoying for me to keep coming back saying that I'm not better...

 

yes.

As a matter of historical record I see your point Jan. Tag I hope you can make that terror HISTORY.

 

Yes, probably! Just felt bad I might be causing anyone distress with the thread title, if I were to post in a more balanced mood I'd probably have avoided an... idk, "inflammatory" thread title let's call it. But it was true for the time and remains so in many ways, so maybe it's for the best to be a little raw with it. Apologies for the two posts/request!