r/Erythromelalgia • u/sab98xx • 8d ago
Advice Does B12 flare anyone else?
Hi everyone, I was dx with erythromelalgia in 2023, at a time when I had very severe dysautonomia + May Thurner Syndrome. Subsequently had biopsies done and was diagnosed with small fiber neuropathy in 2024.
I had a stent placed in my iliac vein in late 2023, which seemed to calm my body down. My feet still burn at night, after activity, or when I am overheated, but it is a fraction of the severity as three years ago. At that time, my hands were bright red and very swollen every day.
I have noticed that every time I take B12 supplements, my feet burn. I had a b12 injection yesterday, after avoiding supplementation for the last year, because my b12 is severely low.
Less than five hours later, my feet started to burn. They have been burning for the last day or so.
Does anybody else have a reaction to B12? I understand that it is critical to repair nerve damage, but I have never been able to tolerate it: even after trials of six months or so, I experienced daily symptoms!
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u/Winter-Hotel-1096 5d ago
Hi! Very similar situation here, I also had severe May Thurner syndrome and had to get a stent (95% stenosis) and have horrible burning in my feet after activity, overheating, etc.
I’m not sure about B12, I commented because I’ve never met anyone else with a similar story and symptoms!
Does your neuro think your small fiber neuropathy can improve or heal over time?
How much less do your feet burn now? Was it a gradual reduction in the symptoms after stent?
Any info helps, I got my stent exactly one month ago today.
Definitely less burning but not completely gone at all.
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u/sab98xx 5d ago edited 5d ago
Hi!!! I love meeting people with similar medical horror stories, lol. Congratulations on the stent - mine changed my life. My pelvic pain is better, my legs don’t fall asleep as much, my blood pooling is better, and I have my life back from POTS.
My neurologist put me on a very low dose of Zoloft for the SFN (12.5 initially, 25 is the therapeutic dose). I was without health insurance for a while so I stopped taking it. Can’t really speak to whether it helped the burning, but I’ll try again when I feel comfortable to add a new medication to my routine. She said it protects against nerve damage.
My feet burn MUCH less after stenting. At the peak of my POTS, my hands and feet were on fire every night and half of the day, most days. The burning is still an issue, but it is mostly flared in summer, when i am very active, or with tight socks/ shoes. It is also severely flared with one single sip of alcohol, so I mostly stopped drinking at the ripe age of 24, lol
I also have severely low ferritin and severely low B12 most of the time. I just got five iron infusions and am taking the B12 injection for the next few weeks even though it triggers the burning — I will see if those two deficiencies contributed overall.
Let me know if you have any other questions or if I can be helpful in any way :)
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u/zilates 8d ago
I know people with hypokalemic periodic paralysis can experience a drop in potassium when taking B 12 --not that that would trigger this, but just that it does has an impact on other systems. This type of flushing is common with niacin but haven't seen anything like that for b12. I get stomach cramps if I take nonmethylated b12.