# Cleaning set off flare

**URL:** <https://forum.livingwitherythromelalgia.org/t/cleaning-set-off-flare/2740>\
**Category:** General\
**Created:** [November 27, 2017, 5:00am UTC](https://forum.livingwitherythromelalgia.org/t/cleaning-set-off-flare/2740 "2017-11-27T05:00:00Z")\
**Posts on this page:** 1\
**Showing post:** 10

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**Author:** ![standing\_cat](https://avatars.discourse-cdn.com/v4/letter/s/e56c9b/32.png) [@standing\_cat](https://forum.livingwitherythromelalgia.org/u/standing_cat)\
**Post date:** [December 1, 2017, 7:23am UTC](https://forum.livingwitherythromelalgia.org/t/cleaning-set-off-flare/2740/10 "2017-12-01T07:23:56Z")

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Hi there

Please hang in there! I know how lonely / isolating this condition can be (or really any rare disorder)

Mine started 2 years ago (I’m in my early thirties). One day I was fine, the next day, BAM! I don’t know what caused it, but around the same time I was getting lots of migraines. I was so scared. Mine is face + hands + feet but my face is the worst for me. The pain was just all-consuming - I felt like I had to stop whatever I was doing to try to tend to the pain.

I told my PCP and she says maybe it’s stress-related. I never felt so invalidated! However, she did help me with the sleep issue 🙂 I hated how I had to wait months to see specialist after specialist. I saw an allergist first, who said my tryptase is high (mast cells) but my condition was not allergy-related, and that I should see a derm or someone else

A friend of mine said once someone has to go down the specialist route, it’s going to be a long haul and she’s right. I saw ~5 docs but I now see a derm at UCSF and a derm at Stanford who are both helpful, thoughtful, and have experience with EM (and who are willing to work together).

I went through a lot of meds and didn’t have great responses. But I recently I seem to be doing ok on a calcium channel blocker (vasodilator)… knock on wood lol. I am more swollen but the pain has lessened considerably … Since my face is the worst, many docs wrote me off as rosacea and would send me away with some topical which of course did nothing. I was feeling so invalidated that my roommate offered to come with me to my doc appts, to help make my case and more thorough treatment.

You spoke of mast cells - I read a case study where antihistamines were helpful for a patient. OTC zyrtec was only temporarily helpful for me, now it doesn’t matter if I take antihistamines or not. Like my allergist said, I really don’t think what I have is allergy-related (esp. if there is pain?) My guess as to why the zyrtec was temporarily helpful: histamine is just one vasodilatory substance (which may or may not be released by mast cells) – there’s a lot of redundancy going on in the body so if it wants to produce a flare, it can fine-tune the amounts/sensitivities of other things so that you will flare. I’ve tried other heavier antihistamines (like taking 2 zyrtec + 2 allegra + benadryl + zantac) and no change.

I hope you get relief soon. Sometimes all you can do at moments is to take one breath after another.

PS [Antihistamine therapy in the management of EM (revisiting the hypothesis)](http://forum.livingwitherythromelalgia.org/t/antihistamine-therapy-in-the-management-of-em-revisiting-the-hypothesis/937) perhaps the increased dust etc while you were cleaning was a factor … I think unlikely, but just a thought.

PPS [HRT/menopause and EM](http://forum.livingwitherythromelalgia.org/t/hrt-menopause-and-em/212/12) seems like I wasn’t the only one who got temporary relief from antihistamines

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