I have a friend with EM who’s afraid to get a Covid vaccine. I have EM and did fine with the AZ vaccine. I think it’s a bigger risk of getting Covid than some EM flares, but wonder about other people’s experiences?
Can you tell me if you’ve had the vaccine, which one and if any problems, or not?
I’d really like to help my friend make the right decision. (Please don’t respond with general antivaxxer sentiments.)
Thank you!!
I had the Johnson & Johnson vaccine in mid-March. I had some chills and what felt like a modest fever the next night. That was it.
Does your friend have a doctor who treats their EM? I asked the doctor who treats mine about it last December and he said the vaccine would be safe for me. He also said COVID-19 infection could potentially worsen erythromelalgia. That alone should be reason enough for any EM patient to take the shot. I’d encourage your friend to talk it over with their doctor.
I received the Moderna vaccine a few months ago. No side effects after the first dose, the second dose hit me a little harder with a fever and body aches but no EM issues whatsoever, just my immune system doing its thing to build a viable COVID army. The benefits far outweigh the risks for nearly every single person. If your friend is worried about the newer vaccines, recommend the tried and true model used in the J&J vaccine. There are no contraindications with EM to the best of my knowledge. Worst comes to worst, there might be a small and very short-lived increase in EM symptoms just from the inflammation and immune response. I notice that if I get sick, I occasionally get a small flare but it subsides when I get better. Vaccines are nothing new to society and are so so important. If they are a visual learner, here are two graphs of death from infectious disease and overall death rates with respect to vaccine discoveries.
Edit: I’m also going to agree with Erik on this one, talking with their personal physician about what is best for them and safest is always a wonderful place to start.
I had Moderna. No symptoms after the 1st dose. 2nd dose no fever or flu like symptoms but my EM was worse for over a month. Really strange. As regular flu vaccines don’t bother me I may get the J&J one next time as it has the same technology as the flu vaccine.
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Just curious. Do you have any auto-immune diseases, @gwadley?
I ask because there is no difference between the first and second Moderna shots. They’re identical shots, given twice. A reaction to the second shot, but not the first, could indicate the reaction was immune mediated.
yea, I know there’s no difference. But with EM everyones reaction is so varied. I probably have some autoimmune but never confirmed. Tests all show negative, but I have small fiber neuropathy that caused my EM and of course they don’t know what caused my SFN.
Have your symptoms now returned to where they were prior to the vaccination?
I had Pfizer and no change in EM symptoms following either shot.
I had both dosages of Pfizer and suffer greatly on a daily basis from EM. The vaccine did not make EM any worse. It did not make it any better either.
Yes, took about 5 weeks but I did return to baseline. 2 weeks later I cut my big toe bad as in 8 stitches. Swelling made that toe flare like you wouldn’t believe. Thankfully that’s finally getting better. Been one hell of a spring.
One dose of Pfizer, sore arm for a day and if anything my flares are less.
I have EM secondary to Vasculitis and I take an immunosuppressive medication called Rituximab to target the Vasculitis. I am on the UKs CEV list ( clinically extremely vulnerable). I have had 2 doses of the Pfizer vaccine and experienced 2-3 days after each jab with a thumping headache, pain in the muscles of my neck and shoulders and tiredness. After that - fine. someone told me that having symptoms meant that the vaccination was working. Don’t know how true that is.
When the pandemic started and the tv people were allowed into hospital I did notice some Covid patients had red legs and feet like mine and later it was reported that burning feet could be a side effect of C.
Not wanting to make my EM any worse tipped the balance for me. Plus the feeling of having some protection and being on the list when the booster comes round is liberating. Good luck
Thank you everyone for your stories. My friend was convinced and got her Covid shot on the weekend! She seems fine so far! Thanks again for your support!
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Hi. I had the Pfizer vaccine and was fine I also was concerned before getting it glad I did good luck
I have not been officially diagnosed but I have red feet and hands and pain in the tips of my fingers and toes however I also have a burning sensation in my skin all over that gets worse at times. Sometimes the air conditioning on my skin even burns. The ONLY the thing I have done differently is March 31st I got my second Pfizer vaccine. I have seen my pcp,an allergist,a trip to the ER,and a neurologist. The neurologist told me he had never seen anything like what I am describing. He had the personality of a sock…ugh. He told me he had no idea and I need to go to Mayo Clinic…he has scared me to death and my anxiety is almost debilitating now. Has anyone experienced anything like this? I am miserable and terrified. Thank you so much!!!
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A similar thing happened to me. The day after my first shot of moderna vaccine I had a strong burning pain in my feet. I haven’t been normal since then. Some days it’s hard to sleep and other days it hurts to walk. The pain started getting better about a month after my first shot, but after the second it went right back to how it was. I did find some research online that said that EM could be temporarily caused by the Pfizer and modern vaccines. I’m really hoping that it goes away with time. 
I just want to add that I haven’t been diagnosed and I’m not sure what the reason behind the burning pain in my feet (and now also right hand) is. I’m seeing my Dr soon and if they tell me it’s not EM I will post an update. I don’t want to encourage people to not get the vaccine as I do think it’s important.
Some information I found on it below:
I had my second shot on 3/31/2021 and this all has been going on for a month. My hands and feet hurt and they are red on the palms and soles and my skin burns and I am tired all the time and my bp is elevated. I am so frustrated because no one can help me. I own a flower shop so I have to be able to work with my hands. I’m in a rural town in Tennessee and I went to a larger town to a neurosurgeon and he was a total ahole. Told me he had never seen anything like it in his 30 years of neurology and told me I just need to go to Mayo. I just want my life back 
Also for @TRMarlar
One thing to remember when considering EM as a diagnosis is that erythromelalgia is triggered by heat and alleviated by cooling. If symptoms go away when using ice or submerging in cold water and are triggered by heat, it’s likely you have erythromelalgia. A simple test would be to place your hands or feet in front of a heater that’s blowing heat. That should worsen symptoms after a few minutes. Then if you place the affected extremity in ice water, after a few minutes symptoms should go away. If you get a positive reaction to both circumstances, it’s likely you’re experiencing erythromelalgia.
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Thank you! I appreciate your help!
I apologize in advance for those who don’t believe or don’t want to hear this.
My EM symptoms started shortly after I received my first Flu vaccine in late 2016.
I only received the vaccine as part of a work related insurance program that influenced the biweekly copay. Essentially I went ahead with the vaccine to lower my biweekly copay.
I have replayed over and over what was different before my symptoms set in and this is the only difference in that timeframe.
For myself, I will not be seeking a COVID vaccine.
If there are those who want to disagree with my theory, fine. I don’t want to hear it.
There is nothing else that happened to me during that time of onset. No injuries, etc.
Either superiorly random or something in the flu vaccine triggered it.
Always wishing the best to those that suffer from this horrid ailment.
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