Did My Covid Vaccine Put Me Into A Flare?

By Ali Long

2 min read

If you read my article How I Felt After My First Covid Vaccine, you'll know that I was very sick afterwards. I was sick for about 5 days. This is ok, being sick was worth getting the vaccine.

There was one day where I spent the whole day in bed, which made my AS symptoms worse. On bad days, I would spend a lot of time in bed, but I always make sure to get up and even just walk around the house and do some gentle stretches. I felt so sick, I couldn’t do this.

So, I spent the whole day in bed. Because of this, I angered my spasms, and I felt a lot stiffer.

My ankylosing spondylitis flared after I got my COVID-19 vaccine

My neck was stiff, my shoulders were sore, and my spasms went from my skull, down my neck, and down past my shoulder blades. I took diazepam, rubbed CBD oil, and applied heat. These are always things that will help ease my spasms, but today nothing helped! I just had to deal with them. I tried stretching and this just made them angrier.

The following day was the same, constant intense spasms. I don’t remember them ever being this intense before! They were so intense that they left bruises along my neck, shoulders, and upper back. This has never happened before. I made sure to take pictures so I could show my consultant as it always seems that I see him on days where my spasms are ok!

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After this, I began to feel worse and worse. My whole body was in pain. My back ached and I felt like the tin man again. I had no energy at all! Even just getting out of bed and walking downstairs made me feel like I was going to faint.

When I feel this bad, it makes me sad. It makes me think back to my old life. I am sick of being sick. I want to have my old body back. I want to have my old life back. Feeling like this makes me feel like I took it for granted. I know I will not always feel like this, I won't always be sad. I will have good and bad days. But it scares me that I'm going to be sick forever.

Toxic positivity?

I always try and remain positive. I try and block out the negative thoughts, the sadness. But recently I have decided that I shouldn’t always remain positive because that’s not healthy. Sometimes I must feel the emotions that come with my physical illness. I need to deal with them. It is ok to cry, it's ok to feel sad.

It's hard to live and deal with the everyday struggles and the unpredictability that comes with having a chronic illness. I don’t need to feel brave all the time. Even though I am being brave by living with this and not blocking out the emotions. I am not getting better anytime soon and that is something I have to come to terms with.

So, I have decided to take one step at a time. It's ok that I have bad days and it is ok that you have bad days too. Good days come, and it's hard to remember that when you are having a bad day.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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nmcat13 Member
Hi - couple questions - "They were so intense that they left bruises along my neck, shoulders, and upper back"... How do spasms leave bruises? Is it from hitting ur body hitting the floor or seat? I sometimes have bruises that I dont know what caused...wondering if this could be cause? Also when you say stay consultant - like a PT person? Or do you have someone that helps consult with drs? For others asking - I have AS and MCAS and I received the vax and was ok. But as we know we're all different and react differently. To me it always comes down to what is the higher/lower risk outcome. For me, and the data and drs I spoke to, the risks of getting it were lower. This might be a helpful resource https://www.frontiersin.org/articles/10.3389/fimmu.2023.1207015/full Thanks <inline-mention username="Bill" user-id="4493676"/> 
1. Doreen H Community Admin
 Hi <inline-mention username="Bill" user-id="4493676"/>, Thanks for sharing the article. I hope Ali will get the chance to chime in here to answer your other questions. All my best, Doreen (Team Member) 
2. Rebecca C Moderator & Contributor
 Hi <inline-mention username="Bill" user-id="4493676"/> - thanks for sharing in the community. I was hoping Ali would have answered your question. I will circle back around and review the comments. It's positive that, based on your discussions with doctors and available data, you found that the risks associated with getting the vaccine were lower for you. This emphasizes the importance of personalized medical guidance when making decisions about vaccinations, especially for individuals with specific health conditions. I too have MCAS and AS, as well as other chronic conditions, and was told that the benefits of the vaccine definitely outweighed the risks. As we are all different individuals, the only way to know is to have this important conversation with your physician. Thanks for sharing the link as a resource for those here in the community. Want to wish you a wonderful new year - may it be healthier and happier. Regards, Rebecca (community moderator)
thrushie Member
Sorry to hear that Ali, I have just had my fourth vaccine ( booster ), And it seems to have also triggered a flare... 
1. Nicky Flikas Moderator
 <inline-mention username="thrushie" user-id="4585224"/> I hope you start to feel better soon and come out of your flare. Sorry to hear the booster put you in a flare. Sending you some warm hugs, Nicky (Team member)
Bill Member
I have had AS for 30 years. I am 50 years old. I had to have my large intestine removed and my thyroid removed. I was in and out of the hospital for two years. Once my surgeries were complete I gained back some quality of life but I am extremely stiff and have no mobility. My spine is almost completely fused together from the AS. I have not been vaccinated but I did have COVID in 2020 so I do have the antibodies. I was lucky to be asymptomatic. I want to get vaccinated because as of Jan 4 there’s a good chance I will lose my job if I’m not. I would also like to be able to travel to the states that I enjoy but without being vaccinated several of the cities and the businesses that I like to travel to will not allow you in. I have been trying to find research on AS and the vaccination and there’s just not much out there. I am scared to death that the vaccination could put my immune system back where it was 20 years ago when I was borderline suicidal. Your story sounds so much like me and I’m very curious to see how you’re doing now. I really hope you are still looking at this website to see if people are responding because you are the only person that I have found online with AS who has been vaccinated. So many people in this country are so aggressive against people who are concerned about the vaccination and I’m just looking for legitimate data. I really hope you are back to “normal” Bill
1. Rebecca C Moderator & Contributor
 <inline-mention username="Bill" user-id="4493676"/> I have AS and have had both vaccines and looking to get the booster in Jan 2022. I believe many here have AS and have been vaccinated. Here is a link to some articles regarding AS/SpA and Covid-19. Hope it helps. Welcome to the AxSpA/AS community! Rebecca (community advocate)
JulesH Member
Hi Ali, I’m very sorry to hear of your body’s reaction to the vaccine. How are you doing now? I’m been cautious about going ahead with the vaccine as my AS symptoms have been fairly mild for a year and I can’t bear the thought of going back to where I was a few years ago. However, I am I’m trying to gather evidence before deciding whether to go ahead with it. Thank you and I hope with all my heart that you are feeling better, Best wishes, Jules
Julie Vallortigara Moderator & Contributor
Oh Ali, I do remember how you felt after your first jab. I am so sorry you have been feeling sick like this. Even with the benefit of what the vaccine brings, it must been hard to have such sides effects. Sending you strength and warmth to ease your pain! I hear you when you say that you want to acknowledge the sadness and negative emotions and not making yourself to feel positive all the time. I can relate to that, as a natural positive person myself, I have the tendency to push away the negative emotions. But I have realised they are necessary to move forward, to do the grief work about the past life we have had and to let the new life come to us. Take care, Julie.

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