NFA QuestionsCategory: QuestionsVaccine causes fibro flare
Gareth asked 3 years ago

Is the vaccine worth it if it makes you far worse?

4 Answers
Margaret N answered 3 years ago

I would like to answer that question once my pain has subsided. It has been six weeks and no relief… so I couldn’t say it was worth it until I know this pain goes away. But in favor of the vaccine I will say it has reduced my worries about getting COVID. I’m able to remove my mask around family, and eat indoors at restaurants now with less stress – so that is a big bonus and good for our mental health. I think we have to weigh the pros and cons.

Tracy C answered 3 years ago

I had my 2nd dose of vaccine on April 22. Like others, the first injection was (comparatively) no big deal. This is July 2,& my pain management doc saw me on an emergency basis because I’m having one sided pain and weakness to go with the extreme fatigue and other horrible pain. Just to be sure, scheduling an MRI of brain to make sure this is “just” a weird, extreme fibro flare. I’ve had fibro since the late 90’s; I have other issues that add to my pain. Nothing has been like this! Hopefully, I think, this is fibro and not MS or some other additional problem creeping up.
As for is it worth it? I agree with Margaret. I can rest assured that I am protected AND I’m helping protect others. I can take off my mask, go out to eat without being very nervous about it. I can run into the grocery store (or I could if I felt well enough to). I do run in for quick errands just to get out and see something other than my backyard. Knowing I am able to be safe when around others makes it worth it. When/if this horrid flare (fingers crossed) subsides, I’m sure I’ll be glad I have done this. I can travel eventually and visit family & favorite places. That is worth the pain!
Hope this helps….

Carmen answered 3 years ago

I still haven’t gotten vaccine due to so many stories of it making fibro flare…mine is already bad enough. So I’m just still isolating for now. I did just read about the new Novavax vaccine that uses older technology like the kind that they used for many vaccines when we were kids. So far they are saying it causes less side effects and may be a better option for those with autoimmune disorders…so I’m really hoping it will be an answer for some of us.

Lissa answered 3 years ago

I had to work very hard to find the vaccine in my area. Lots of time online and on the phone, but finally I was called for an appointment. I got the Moderna vaccine at noon. An hour later I was in the grocery store and realized that I didn’t have the strength to make it to the car and that the cart was keeping me upright and I started pouring sweat. Fortunately I was with my husband and we were on the way to checkout. So basically I used the cart as a giant walker and I made it thru checkout and to the car. By this time I was colorless and my clothes were clingy wet. For the next 2 weeks I was knocked out, going to the bathroom left me wheezing. it seemed to me that I felt like I had a bad case of flu as opposed to a flare or the flare was lost in the misery of the flu. I did utilized my pain meds on schedule and that helped with the deep bone aches and electric skin.
As bad as it was, I would do it again to avoid a breathless horrible death, alone without my family around me. My husband, son, and daughter all had Phizer and had no problems. It only takes minimal exposure to catch Covid, a risk I was not willing to take. I would do it again in a heartbeat. I was diagnosed with Fibro over 25 years ago, we know each other well.