I got my first COVID-19 vaccine dose!! Since so many people with ME have legitimate concerns about the vaccines, I thought it would be helpful to share my own experience.
Two weeks ago, I described the melee competition for vaccines in my area. I was prepared to wait however long it took, and I spent time every day going through all the possible options to get an appointment. A very kind friend made me an appointment for mid-March at a pharmacy in Philadelphia, but it wasn’t clear if the pharmacy was restricting the vaccine to city residents. Finding an appointment closer–and sooner–was my goal.
Then last week, I got an email from my county! My place in line had come up and I had a chance to make an appointment. The catch was that slots were only open during the next two days. That can be tricky for anyone’s schedule, and a more severely ill ME patient might need more lead time in order to rest and prepare. I was so eager for the vaccine, though, and 48 hours notice was doable for me. And I got an appointment for my husband too!
I know many people are concerned about the potential for allergic reactions to the COVID-19 vaccines, particularly if they have mast cell disease. I have mast cell activation syndrome, and it is generally well controlled by medication. The Mast Cell Disease Society recommends people avoid the vaccine only if you know you are allergic to one or more ingredients in it, or are otherwise advised by your doctor. They also recommend pre-medicating with your H1 histamine blocker one hour before the vaccine. My doctor concurred, so that’s exactly what I did. One hour before the appointment, I took an extra dose of my H1 blocker. Also on the advice of my doctor, I skipped my beta blocker the night before.
The vaccine process itself was a little overwhelming. Our appointments were at a local high school, and there were a lot of people there. The signage wasn’t great, so it wasn’t clear where to go to register versus where to wait for the shot. Fortunately, there were many volunteers directing traffic and answering questions. I was thrilled to see people volunteering to help! We’ve been so isolated for the last year that I had no sense of whether this was happening at all. Those volunteers were essential to keeping things running smoothly.
Once we knew where we were going, it was quick to get registered and in line for the vaccine. If you have mobility issues, including difficulties waiting in line, you might want to call ahead to your vaccination site. The entire place was wheelchair accessible, but there was no obvious accommodation for people who needed to sit while waiting. I’m sure a volunteer would have assisted if I needed it, but ask in advance if you have concerns.
Getting the vaccine itself was quick, of course. The nurse did ask me what my specific underlying conditions were, which caught me off guard. We had been told we would not need to disclose the conditions that qualified us for the shot. However, when I started listing them she said, “Oh ok, nothing that will interfere with me giving you the vaccine.” After the injection, she directed me to the observation area. She said, “If you start to feel any different than you do right now, raise your hand and someone will help you.”
The post-vaccination observation was self-timed, which I thought was interesting. There were volunteers watching over people and checking on them, but they weren’t timing us to ensure we stayed at least 15 minutes. One person felt faint and needed to lie down. I’ve heard from friends that this is not unusual, but I don’t know if feeling faint after this vaccine is common everywhere. Keep it in mind, though, especially if you have any orthostatic intolerance issues. Fortunately, I felt completely normal (for me) so we left after about 20 minutes.
Now to the after effects, which is what I think concerns most people with ME. A few hours after the vaccine, I got a headache and then crashed. I managed to eat something and then had to be horizontal. The same was true the next day. I had both muscle aches and random joint pain in places I don’t usually get it. And the malaise was no joke. I slept a lot, and was in bed most of the day. The good news is that the next day, I was approaching baseline. And since then, I have had a normal-for-me week.
The bottom line of my personal experience is pre-medicate with an H1 blocker, and prepare for one or more crash days post-vaccination. Most people (not just people with ME) report that the second vaccine dose triggers more intense side effects. I’m preparing myself for that to happen when I get dose two in a few weeks. For me personally, I am very willing to go through a bad crash in order to know that I won’t die or even be hospitalized if I end up getting COVID-19.
Have you gotten a COVID-19 vaccine? What was your experience like?
Hi Jennie,
Thanks for writing about this.
I had my first vaccination. Moderna. My experience of physically getting it was pretty much like yours. Hard to get an appointment, slightly overwhelming experience at the venue,but nice and helpful staff. Afterwards I had one day of mild symptoms- earache and sore throat, a mild visitation of my go-to childhood ailment. I took it easy and rested as planned, so I’m not sure if my symptoms would have worsened had I tried to do anything. The following day I was pretty much back to baseline. I am relieved that I have another appointment in just over 2 weeks time, and am also preparing for more and worse side effects. I share your feeling of relief, as the fear of getting Covid is worse than temporary side effects. I do hope they are temporary as well for all the ME folks who get vaccinated.
I’m glad you tolerated it pretty well!
Hi Jennie,
Thanks for writing about your experience with dose 1 of the vaccine. I received my first dose on Sunday. After a couple of weeks of great frustration trying to get an appointment, I was finally able to find one with one of the major pharmacy chains. The process was amazingly smooth. There wasn’t anyone ahead of me when I arrived. I was a bit early and was able to get the shot early. There was a waiting area with chairs separated by plexiglass (or some such thing) barriers along the sides. There wasn’t anyone visibly monitoring, but someone did walk through every so often, and that person knew when my 15 minutes were completed.
I did crash later that day. I was achy, had a headache, and the overall fatigue was definitely worse, as was the brain fog. The headache and aching was better by Tuesday, but the increased fatigue and brain fog continued. Today, Thursday, is the first day that I feel like I’m getting close to my baseline. I have no idea if taking an H1 histamine blocker would have minimized this reaction in any way. I might try taking one before my second dose in a few weeks. I had taken a 24-hour H1 histamine blocker the night before, so, theoretically, I did have some on board at the time of the first shot.
You are giving us all a great gift with this ongoing blog. Thank you!
I’m so happy you got it and that you are feeling better today!
The second shot for us was just more of the same – normal husband, ME/CFS me – didn’t feel normal and slept a lot for a day or two, and then were okay. Maybe three days.
We had planned for it to be much worse, and still would have gotten the shots, but it wasn’t.
Glad you’re vaccinated: even though we still have to be careful, and follow all protection protocols, the stress goes way down when you know you’ve done as much as you can, and now, even worrying about the kids getting vaccinated asap, we are just better.
Is is incredibly stressful waiting for the first dose, and then worrying that the second might not happen in the appropriate time frame recommended by the vaccine makers, and that stress is gone. Plus the government is now on the job, and saying we may have everyone vaccinated by the end of May.
The biggest concern now, going forward, and forever, is the huge mass of people who insist they will remain fountains of disease – by choice. The virus thrives in those conditions, and the mutations are already a cause of worry.
Stay well. Continue precautions. Take care of yourselves.
I got my first shot on 2/22 (Pfizer). I always get knocked back after vaccines, more or less. This on wasn’t any different. I had a sore arm for a couple days and extra fibro pain and fatigue for 3 or 4 days. Not a big deal. We’ll see how the second shot goes.
Thanks for blogging about this–it helps to hear the stories of other ME patients.
Hurray! You got it!
Congratulations all.
As an ancient one, I have gotten both shots, Moderna. I’ve never had a bad reaction to a flu or any other shot, so I was comfortable with the first shot, which went well. Just a sore arm. Ice and Tylenol took care of that. For the second shot, I got so nervous like it was my wedding day or something that big. After the shot, I felt such a sense of elation and relief (and some minor after effects for a few days).
It was the waiting and trying to navigate the appointment system to get the shots that was so hard and nerve-racking for me. I never felt secure that I would get both or even one, but I did. My younger circle is now eligible and are having an easier time getting their first shot. Hopefully it will be smoother going forward.
I wish everyone a speedy appointment and easy recovery.
I am so glad you were vaccinated without much difficulty!!!
I got Covid last year, and it nearly killed me. I was sick for 2 months, and I’m still not completely recovered. I had been making steady progress in improving my health and stamina, and the virus set back 5 years worth of work.
I got the vaccine, because I have a feeling that if I get Covid again, I won’t survive. I was told to take Tylenol an hour before the vaccine, so I did. For the next 24 hours I had a slight headache, and a small sore spot on my arm – then I was fine. For the second vaccine I was told that my reaction might be a bit stronger. I took Tylenol, and felt a little headachy and brain foggy for about 48 hours.
All in all, I feel like it was totally worth it, but I have to admit that I was nervous. I figured that if anyone was going to have an unusual reaction it was going to be me, but thank G-d that everything worked out.
If I have to get two shots every 6 months for the rest of my life, in order to stay ahead of new mutations, I’ll do it gladly.
I forgot to mention, I live in Israel and the vaccine was super easy for me to get. I’m 55, and have preexisting conditions. I got the Pfizer vaccines that everyone was so worried about.
My health insurance here is excellent, and we have no shortage of vaccines. Right now everyone over 17 qualifies, and can get an appointment any time.
My goodness, I am so glad you were able to get the vaccine without much difficulty. I sincerely hope you continue to recover. I’m with you – vaccinate me every six months if that’s what it takes!
I got my first dose on Monday – Pfizer. I do have orthostatic intolerance, so my partner took me in my late mother’s wheelchair, and I experimented beforehand to find a pillow that allowed me to somewhat recline in it. It has small wheels, so she had to push me in it, and it was very easy for me. I’m signed up for information from our Governor, so one day she said to go to our town websites for information, and there was a place to put our contact info and check if we were over 75 and interested in vaccine info. So I checked, and they called me the next day with an appointment at our local senior center. It was very efficient, no lines, no waiting. Cheerful and busy – reminded us of election day. I could barely feel the shot, and didn’t feel any different. We went to the room where you wait for 15 minutes, and were directed to an empty chair, so my partner parked me next to it and sat in it herself. They weren’t timing us either, so we stayed for half an hour just in case. I was pretty wiped out, had supper and early bed. I tried moving my arm around, as I’d read to. It hurt if I held it up by itself but I had more luck if I propped it up on the other arm and moved it back and forth. In the morning my arm hurt just a little, only if I moved it. I was freezing cold all day and spent it under my big puffy comforter with my feet on the hot water bottle. I was moderately exhausted and more brain fogged than usual, which I think was CFS, not the shot. Today I’m REALLY exhausted and brain fogged and I realize it’s the 3rd day after, which is when CFS crashes always really hit me. I had made the mistake, the morning before the shot, of pushing to get some household bookkeeping done involving a check to my brother that I didn’t want to delay in case I couldn’t do it after. Plus the pressure of getting under way in time with everything I needed, and some apprehension, and any expedition out of the house will crash me anyway. I should have spent the morning in bed watching sailing videos. But my arm is completely comfortable now.
Overall, it sounds like a smooth experience. You make an excellent point that I forgot to say: the importance of preemptive rest! To the extent possible, it’s a good idea to rest up ahead of time to minimize the crash afterwards. I hope you come back to baseline soon.
Thanks, Jennie. Sooo helpful. Glad you got vaccinated.
Thanks, Jennie.
One person’s experience is only anecdotal, but I can report that I had a much more significant reaction after my first dose of the Pfizer vaccine than after the second dose. After the first dose, my upper left arm was very sore, I was achy for several days, and experienced significant PEM. (I was surprised, though, at how jubilant I felt immediately after receiving the vaccine—wow, I thought, I’m fighting back now!)
I took the second dose in my right arm and had no arm pain and no significant achiness or PEM.
I was scheduled to receive my second dose on a Friday, but I could not summon the necessary strength or ‘wellness’ to get there that day. That caused me to worry. Yikes. What do I do now? Then I read that if you miss your scheduled second dose, you should get it as soon as possible after the missed date. I was able to get to my vaccine location the following Monday and was assured that three days late was not a problem! Big relief all ’round.
This is really interesting. I haven’t heard of people having bigger reactions to the first shot than the second. I guess it’s a difference in immune system function?
The timing of the second shot is not as tight as the initial FDA guidance stated. CDC now says you can receive the second dose up to 42 days after the first. Our county has put everyone–Moderna and Pfizer–on a 28 day schedule. This makes a lot of sense logistically.