My erythromelalgia flares seem to be significantly worse (more frequent, longer lasting, triggered by smaller temperature changes) during my period, and I was wondering if anyone else has experienced the same?
Thoughts as to how it might be related:
Directly by hormones
1.5 Hormones \imply generalised swelling, triggering EM by pressure directly
Higher body temperature during periods (there’s actually a differece of about 1’F between the time of your period and just before)
Secondary effects like eating more salty/sugary foods, which induce flares
Does anyone have ideas? I haven’t been keeping track of how my periods affects my Raynauds quite so much. I think I generally feel warmer during the week, and that helps a bit, but I’d have to pay more attention to this.
I haven’t noticed a difference in flares (though I will pay more attention to that timing now), but I am far more likely to get puffy swelling in my feet and ankles right around the beginning of my period.
One other factor that might be related, to add to your numbered list (might fit in #3): Activity levels. I know that I, for one, am more sedentary when my period is in town.
Oh yes! My EM is so much worse (all symptoms) beginning about 10 days before cycle and lasting until the second or third day into the cycle. I’ve been documenting it for nearly a year. My swelling gets so bad I have to crawl because I cannot put my feet down. It feels as though my foot will burst from the pressure. I guess I should add that my EM has gotten to a state that I’m in a reclined elevated position most of the day. I have maybe 4 good hours each day that I can get up and down and do well but it’s early morning hours only (2 am - 6 am) and during my cycle I get less. I’ve been battling EM secondary to no sweating over 95% of my body for 3 years. And it’s been intense since the beginning.
Hope this helps you feel in good company. I thought I was imagining it at first and then I started the journal and discussed it with my doctor.
Yes- hormones can influence. I was talking to someone with a sodium channel mutation who said she also noticed horrmonal patterns which was interesting. I believe hormones themselves aren’t pathological (my levels are normal) / the driver but might influence inflammation / serotonin / vasodilation / unknown which we are going to be super-sensitive to
Great to know other people experience this! I agree there should be much more research in this area, as it may give insights to treatment avenues.
@standing_cat I am really interested that you mentioned serotonin because I had some EM + exacerbated Raynauds symptoms when I came off of an SSRI (sertraline). It seems like sometimes SSRIs are prescribed to help treat EM and sometimes they make it worse (from the superficial research I have done). Do you know much more about it?
No, and I’m not sure anyone does know more than that (sometimes they help, and sometimes they make things worse). I notice my EM is so much worse without an SSRI or SNRI, as well.
Ah. It must be about the chemical balance somehow. I hadn’t actually had any EM symptoms prior to the SSRIs, and I think coming off of them was a factor contributing to EM development; my circulation became extraordinarily bad, my joints swole, I had general oedema and peripheral itching. Proper EM then hit when I (re)started started my period after a long hiatus a couple years later.
I’m really sorry you need SNRI and SSRI for treatment. I know they affect everyone differently, but I had a very very bad experience with them (not prescribed for EM). I so wish there were better options available for people.