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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...
 
@tag24 and @rand:

(@tag24, I saw your mod request on that new post, realized this is what that was about, so no need to DM me.)

@rand, I'm not sure I understand your motivation in making this suggestion - is there a personal element about the subject line that bothers you? Or are you suggesting that @tag24 would benefit by consciously shifting focus from negativity to a more constructive outlook?

I guess those are rhetorical questions on my part, because upon reflection, I am not going to change the subject line of this fairly long-standing thread.

I have been willing to change brand-new titles for people who realized right after posting that their original title was obscure or misleading in a way that would not return the desired results. But this was a perfectly good subject line last May, that accurately represented @tag24's mental state at that time. As a community forum, I believe it's important for others to be able to see it. For one thing, and everyone here should relate to this, there are always people here who are seeking support, and you never know when someone might feel less isolated in their own distress if they can see that they aren't alone.

@tag24, is it possible that the classic TMS personality trait of people-pleasing had anything to do with your immediate acquiescence to this suggestion? Just a wild guess - playing devil's advocate a bit...

Yours in community,

~Jan
 
JanAtheCPA said:
@tag24 and @rand:

(@tag24, I saw your mod request on that new post, realized this is what that was about, so no need to DM me.)

@rand, I'm not sure I understand your motivation in making this suggestion - is there a personal element about the subject line that bothers you? Or are you suggesting that @tag24 would benefit by consciously shifting focus from negativity to a more constructive outlook?

I guess those are rhetorical questions on my part, because upon reflection, I am not going to change the subject line of this fairly long-standing thread.

I have been willing to change brand-new titles for people who realized right after posting that their original title was obscure or misleading in a way that would not return the desired results. But this was a perfectly good subject line last May, that accurately represented @tag24's mental state at that time. As a community forum, I believe it's important for others to be able to see it. For one thing, and everyone here should relate to this, there are always people here who are seeking support, and you never know when someone might feel less isolated in their own distress if they can see that they aren't alone.

@tag24, is it possible that the classic TMS personality trait of people-pleasing had anything to do with your immediate acquiescence to this suggestion? Just a wild guess - playing devil's advocate a bit...

Yours in community,

~Jan
Click to expand...

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!
 
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