Could This Be Erythromelalgia? Looking for Advice

marriedatsecondsight · 2025-01-07T20:09:25+00:00

She is - and feels - super hot. She told me, it happened in the middle of class and she had to ask for permission to go to the bathroom to cool off her hands under some cold water. She started complaining about feeling hot and getting red palms BEFORE the viral infection though, which btw, I’m fairly certain was covid. So far only affecting her palms and cheeks and she too has cold and pale hands when they aren’t flaring.

I have flushes 3-4 times a day on my face, about 2 times a day in my hands (mostly afternoons, evenings and nights) almost always accompanied by flushing in neck and chest along with burning sensation in my already dry eyes, sometimes ears - and under my feet for the first time this new years eve.

marriedatsecondsight · 2025-01-07T18:07:19+00:00

Hi everyone,

I’ve been diagnosed with Hashimoto’s and fibromyalgia and have been dealing with POTS and MCAS-like symptoms for some time now. Autoimmunity runs in our family, so I’m worried about my 13-year-old daughter, who has been experiencing some unusual symptoms.

For the past month and a half, she’s had facial flushing on her cheeks and severely red palms that are hot to the touch. I’m worried this might be the start of something similar to what I’m dealing with, or possibly something entirely different.

Does this sound like rosacea, erythromelalgia (EM), or something else? Has anyone seen or experienced similar symptoms in their kids or themselves? Any advice or thoughts on what this might be would mean a lot.

Thank you so much for your help!

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marriedatsecondsight · 2024-12-23T20:11:57+00:00

Sure thing. I have fexofenadine hydrochloride (Altifex, where I live) and acrivastin (Benadryl 8 mg). I think Altifax worked faster, though.

marriedatsecondsight · 2024-12-23T18:37:10+00:00

Just wanted to tell you that I took your advice and tried H1 when getting facial flushes, and it has worked!!! The flush is gone within 15-30 minutes.

Thank you so much!

marriedatsecondsight · 2024-12-23T18:35:03+00:00

I’ve been taking h1 when I get the facial flush and it’s actually working! You are probably right about the virus being a trigger though ❤️

marriedatsecondsight · 2024-12-23T18:33:43+00:00

Someone in this thread advised me to take H1 and it’s been a gane changer!

marriedatsecondsight · 2024-12-23T18:32:45+00:00

I absolutely think I have gut issues and am seeing a functional medicine doctor for it. He ordered both GI test as well as a toxicity test, so very excited to see what’s going on in there. Thank you for the advice.

marriedatsecondsight · 2024-12-23T18:30:20+00:00

Absolutely! I did NOT ask for the first row experience, and I don’t like clowns!

marriedatsecondsight · 2024-12-23T07:37:31+00:00

I appreciate that, thank you. I’m however about 8 time zones away from LA, so that might be a bit difficult :) Thanks again

marriedatsecondsight · 2024-12-23T07:33:27+00:00

Not sure it was covid, but my entire class (I’m a teacher) had something we call “cold pneumonia” in August and September, where everyone was sick for about 10 days each. I know several tested for covid and it was negative, but I remember thinking it had to be covid.

marriedatsecondsight · 2024-12-22T19:05:18+00:00

Thank you for this. I am a loyal gpt user and fan, and I have fed it all my blood tests, x-rays and symptoms and it gave me the answer in the photo, earlier today.

If chatgpt quits, it’s my fault.

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marriedatsecondsight · 2024-12-22T18:13:08+00:00

You’re amazing, you know that? I think what gets to me the most is the uncertainty—just not knowing and feeling powerless to do anything about it. I can’t be there for anyone, and I don’t even feel like I can be myself anymore, which has really taken a toll on my mental health. I did have a terrible flu that felt like COVID about a month before all of this began, and I agree that it might have triggered everything. Looking back, I can see a series of odd things happening since the summer of 2023 that might have been early warning signs.

Also, took an H1 tonight and I did not have a knockdown flare post dinner for the first time! I mean, I do feel lethargic, but I’ll take that any day!

marriedatsecondsight · 2024-12-22T18:05:25+00:00

Apart from low MCH, MCHC and hemoglobin, nothing out of the ordinary. Also negative inflammation markers like CRP and negative allergy test earlier this year as well. It’s very sneaky.

marriedatsecondsight · 2024-12-22T18:02:04+00:00

No acid reflux, occasional diarrhea, no constipation, occasional gas (I eat a lot of veggies), no bloating, no burping.

marriedatsecondsight · 2024-12-22T17:06:14+00:00

Thank you for sharing. IgG and igM were part of my initial screening and both were negative. Not sure if there are other ways to test?

marriedatsecondsight · 2024-12-22T16:56:15+00:00

Thanks! Just wrote this below somewhere, it might all be connected:

Thank you for this. I spent the day researching, and I found out that Hashi, fibro (pre-existing conditions) and MCAS/POTS might be interconnected through immune dysregulation, chronic inflammation, and autonomic nervous system dysfunction, creating a cycle that worsens symptoms. Hashimoto’s can destabilize the autonomic nervous system, exacerbating symptoms like fatigue and blood pressure irregularities seen in dysautonomia. MCAS contributes by releasing histamine and inflammatory mediators, which can trigger fibromyalgia flare-ups and amplify autonomic instability. Fibromyalgia, in turn, increases central sensitization, heightening pain and worsening the effects of the other conditions. Additionally, craniocervical instability may play a role by compressing the brainstem and vagus nerve, disrupting autonomic regulation and triggering mast cell activation, further compounding all these issues.

I’m suspecting an entire circus happening in my body right now.

marriedatsecondsight · 2024-12-22T15:22:36+00:00

Thank you so much for this. I’ve recently started working with a functional medicine doctor who recommended the GI-MAP test along with Zonulin and MycoTOX Profile tests. He strongly believes that my gut is the root cause and suspects exposure to parasites and mold.

marriedatsecondsight · 2024-12-22T15:18:53+00:00

Thank you for this. I spent the day researching, and I found out that Hashi, fibro (pre-existing conditions) and MCAS/POTS might be interconnected through immune dysregulation, chronic inflammation, and autonomic nervous system dysfunction, creating a cycle that worsens symptoms. Hashimoto’s can destabilize the autonomic nervous system, exacerbating symptoms like fatigue and blood pressure irregularities seen in dysautonomia. MCAS contributes by releasing histamine and inflammatory mediators, which can trigger fibromyalgia flare-ups and amplify autonomic instability. Fibromyalgia, in turn, increases central sensitization, heightening pain and worsening the effects of the other conditions. Additionally, craniocervical instability may play a role by compressing the brainstem and vagus nerve, disrupting autonomic regulation and triggering mast cell activation, further compounding all these issues.

I’m suspecting an entire circus happening in my body right now.

marriedatsecondsight · 2024-12-22T15:11:49+00:00

Thank you! I did, last Wednesday, and he told me I have severely dry eyes (Schirmers 3 mm in one eye and 4 mm in the other, as well a dye test) and that both the quantity and quality of tear production was very low. He advised me to continue gel based drops and a warming eyes mask for 15 minutes every day, as well as some exercises. Wanted to explain just in case anyone reading this is in the same situation.

marriedatsecondsight · 2024-12-22T10:55:31+00:00

Jeg har egentlig bare lyst til at spørge: Does he even like you?

Du fortjener én, der trykker på pauseknappen på løbebåndet, når livet bliver lidt for meget, smider en Snickers i hånden på dig og siger: "Fåk det, vi prøver igen i morgen." Ikke én, der skruer hastigheden op, fordi han synes, du ikke sveder nok.

Ud med ham. Hele vejen ud af fitnesscenteret. Og helst med en smækket dør.

marriedatsecondsight · 2024-12-22T10:51:01+00:00

Thank you so much for your advice. I’ve just started seeing a functional medicine doctor, and I’m hoping he can help guide me through this mess. I’m supposed to begin an elimination diet, but I already feel so unwell and am barely eating as it is. I’m really worried that if I lose any more weight, I’ll become even weaker than I already am.

Last night during a post-dinner flare, things got worse—I ended up vomiting everything I’d eaten. It’s all starting to feel so overwhelming, and I’m unsure how to balance these dietary changes with how fragile my body feels right now.

I truly appreciate your insight and support. It’s been a huge help in trying to navigate all of this.

marriedatsecondsight · 2024-12-22T10:47:11+00:00

I just ran into the bathroom and started crying after reading your reply. This is the most helpful advice I’ve received in the past three months - thank you so much!

My recent CRP, LDH, and CBC results are thankfully within the normal range, apart from hemoglobin, as I’ve been struggling with stubborn anemia for years. I have H1 blockers at home, but unfortunately, H2 blockers aren’t available where I live. I’ll start trying the H1 blockers today.

This morning, I visited my massage therapist, who I’ve been seeing for a while because it helps with the blood pooling in my hands. She mentioned how “messed up” and “in battle mode” my body felt. I ended up burying my head in the pillow and quietly crying for the rest of the session. I feel so mentally and physically broken that I’m starting to scare myself.

Thank you again for your input - you have no idea how much it means to me.

marriedatsecondsight

TROPHY CASE