I mentioned that I went to a rheumatologist a few weeks ago. I waited 10 months for this referral appointment so I. was. going. with Sutton, stroller, snacks, and all. It was an hour's drive to get there.
The long version of the lead-up to the appointment was that I saw a doctor in Kansas in the spring of 2021 for something unrelated, mentioned this issue, and he told me I should try to get into a rheumatologist. He put in a referral and they had wanted to set up an appointment in Kansas City back during the summer of 2021. We were super busy that summer and driving 3.5 hours one way to a specialist with 3 year old Wells sounded like quite the nightmare. So I just didn't. Then I was pregnant. And seeing anyone who specializes in vascular issues while pregnant is silly because your body doesn't work the same way when you're carrying a baby. Finally, last summer, I decided to set up a new referral out of this hospital and they put me at a doctor an hour away and it was a 10 month wait.
Basically, starting back in 2013-2014, I noticed that my hands would get really red and even swell a little when I was hot, over-exerted, or stressed out. But then sometimes, they'd get really cold and seem to shrink back (like my rings would feel loose) when I was stressed out. Essentially, I've noticed that whatever I'm feeling goes to my hands. Sometimes they get really cold and have the blue tint of seeing the vessels too.
It was the oddest thing obviously but, like anyone else probably would, I just ignored it. I had enough problems back then: the effects of coming off of hormonal birth control (acne), diagnostic testing for fertility issues, etc. This did become a persistent problem over the next few years though, for sure, but I was convinced it was all connected.
While I had been told by a few doctors that I likely had Raynaud's, this specialist took one look at said ahhhhh erythromelalgia. There was no doubt about it to her.
The weird thing about this is that it's usually a secondary condition caused by a disease you are already diagnosed with or a side effect from a strong medication. It can also be genetic or it can just pop up. For me, it just popped up. The doctor said she'd only seen it once before and that was connected to lupus.
For me, it's not severe. If you look at the symptoms online, it sounds really awful. In my case, it's more cosmetic than anything. For instance, it doesn't affect my feet at all, thank goodness. It's only my hands. It doesn't hurt. So redness and heat, but not burning or pain. Sometimes my hands will be red but they'll feel cold. Sometimes I notice tingly-ness if it's particularly bad...this would happen, for instance, if it's 90 degrees outside and I'm cutting grass. Or if I'm out walking the dogs or pushing the stroller in warm weather. So I've never really treated it; it usually just goes away when I've "calmed down" from whatever activity I'm doing. It does act as an awful tell if I'm particularly stressed sometimes. I've never even attempted to count the number of flare-ups...usually it's just if I'm outside in warm weather.
The rheumatologist told me there wasn't really much I could do besides take a baby aspirin every day. She did a few special blood tests to look for a potential underlying cause. The only good thing about our years of "unexplained infertility, with potential PCOS" was that I'd already been tested for everything. The tests came back negative for any autoimmune issue. She said I have *no* autoimmune conditions, which was always something I assumed I likely had on some level. I do think there's a few connections, from the PCOS to the supposed thrombocytopenia to the, now, erythromelalgia.
Anyway, I just thought I'd put this put there. It's pretty rare but still possible that you or someone you know could be dealing with the symptoms.
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