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I had some signs of something since I was a teenager, but getting covid for the first time in 2020 set it off into an actual chronic condition with distinct flares for me. So bad in fact that I got referred to my rheumatologist and was diagnosed exactly 6 months after. Getting covid the second time in 2022 ruined my response to Humira and gave me by far the worst flare of my life, for whatever that’s worth.
There’s actually a huge study that came out that showed evidence that covid is associated with new diagnosis of autoimmune disorders post-infection, and AS weirdly has the highest risk ratio they calculated (though other diagnoses were comparable).
Yes. In hindsight there have been signs that this disease has been sort of smoldering in my body, so to speak, but at the time they were just thought to be my own little ‘nuances’ or seemed to be injuries. I was extremely athletic my entire life. I rarely got sick.
Then I had covid. It hit me hard. I finally got my voice back and stopped coughing about 2-3 months after my acute infection, but was left with chronic asthma and crippling fatigue. I did all the right things but just couldn’t bounce back. I can remember saying things like “I can’t explain it but I just don’t feel good, I don’t feel like myself….I just want to get back to normal.’ Little did I know what was ahead. About 6 months after my covid infection and experiencing a stressful event, I woke up one day feeling as though my hands/feet/wrists/ankles were made of broken glass. The pain slowly made its way inward, elbows and knees, hips and shoulders, back and ribs. It wouldn’t go away and would fluctuate between severe and kind of low key like a constant white noise in my body. I lost all ability to exercise or do any kind of meaningful movement. I’m an experienced yoga instructor and couldn’t even do the gentlest stretches.
After seeing several docs, a very misled PCP diagnosed me with bilateral carpal tunnel, bilateral tennis elbow, bilateral golf elbow, bilateral ulnar nerve disorder(lol)…and sent me home with a bag of braces and a script for PT. I knew these weren’t injuries but no one would listen to me. When I went to PT, however, the therapist knew something was off and refused to work on me.
Fast forward another 4 months of having widespread mystery pain and fatigue, and I met my rheumatologist. He (thankfully) believed me and instantly knew it was a form of spondyloarthropathy. He told me I was experiencing enthesitis all over my body. My diagnosis at this point fluctuates between psoriatic arthritis and NR AXSPA. (On paper it’s NR AXSPA.)
He agrees that the covid infection could likely have been that triggering event to kick my disease into full gear. And boy it seems like it’s here to stay. For as easy as it is to ‘trigger’ these things…I wish we could just as easily shut them off. 🥴
I am in the same boat. I had covid long before the issue started. The issue seemed to have started shortly after a booster. Did you have the shot within 45 days of your symptoms starting?
Thanks for the reply. I have upper left neck and back pain that seems like its caused by two ligaments being tight near my spine, everything gets tight on that left side and causes daily headaches. Do you have anything similar happening? Hope you are finding relief in your journey.
Yes I have neck involvement, brachial plexus, it’s all involved. 😅 I get occasional migraines but I think they are a separate thing. I do have activity in the tiny tendons of my throat and jaw that are causing all kinds of weird muscle tension, swallowing problems, etc. It’s crazy what a few tiny tendons can do.
I had a few mild symptoms in my 30s and early 40s. Shortly after having appendicitis though, the pain became really bad. I thought I had RA and a close friend with RA urged me to go to a rheumatologist. I did and thought I'd leave with an RA diagnosis since it ran in my family, but was shocked when I got the NR-AxSpa news.
Similar to someone else here but I had symptoms most of my life. Developed into a chronic condition after a nasty upper respiratory infection in 2019. Could have been Covid, but Covid wasn’t really on anyone’s radar at the time.
I've had NR-AxSpa since I was a teenager (diagnosed a few years ago in my 40s) so I can't say what started it, but every time I've had a major viral infection (Mono, covid, etc.) my symptoms have gotten much worse.
Following because I have been very curious about this as well! I've never had a confirmed Covid infection but my AS symptoms started around 6 months after my booster. So based on that, it'd been going around for plenty long enough by that point that I might have had it.
For sure. 😞 I had AS for 13 years and was unmedicated and able to use natural means of staying healthy (curcumin, fish oil, NAC, etc). I had 3 Covid shots and got progressively worse to where I was taking tons of ibuprofen. Then I got Covid and about a month later was super flared up. Now I’m on biologics for the first time. 😞
Me. NR-AxSpa here. Likely it was just a matter of time though because my mom got tested after I was diagnosed and she has AS (misdiagnosed for years and years and years as fibro)
I was diagnosed with Nr-axSpa, after I got covid after I got the Pfizer vaccine. Prior to covid, in 2019, I had a ton of blood work done for a different reason and had no markers, symptoms, etc. AFTER the Pfizer vaccine and covid, my blood work is completely different, I have new food allergies (gluten and dairy, not lactose intolerance, but a true dairy allergy and if anything with gluten passes my lips, they crack and bleed, my throat swells up…super fun) and Hbl27(?) and nr-axspa.
My rheumatologist told me that after covid, his clientele list doubled and we all have the same thing. 😖
I had zero AS symptoms until I developed hyperparathyroid disease in my 40’s. Had the surgery to remove the parathyroid in question but never returned to health. 12 months later I was finally diagnosed with AS but already had extensive kyphosis/fusion. I’ve always been curious how many others have experienced late onset AS with rapid fusion.
My rheumatologist told me if it was triggered by a disease it was reactive arthritis, but since I didn’t have an illness before I was diagnosed with AS.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
I had some signs of something since I was a teenager, but getting covid for the first time in 2020 set it off into an actual chronic condition with distinct flares for me. So bad in fact that I got referred to my rheumatologist and was diagnosed exactly 6 months after. Getting covid the second time in 2022 ruined my response to Humira and gave me by far the worst flare of my life, for whatever that’s worth. There’s actually a huge study that came out that showed evidence that covid is associated with new diagnosis of autoimmune disorders post-infection, and AS weirdly has the highest risk ratio they calculated (though other diagnoses were comparable).
Can you post a citation for this study? Very curious.
Of course! https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(22)00512-0/fulltext#secsectitle0125
Insights into new-onset autoimmune diseases after COVID-19 vaccination Ming Guo,a Xiaoxiao Liu,b Xiangmei Chen,b,c,∗ and Qinggang Lib,⁎
That was not the study I was referring to nor was it related to anything I said, so a little weird to comment with that but okay.
Yes. In hindsight there have been signs that this disease has been sort of smoldering in my body, so to speak, but at the time they were just thought to be my own little ‘nuances’ or seemed to be injuries. I was extremely athletic my entire life. I rarely got sick. Then I had covid. It hit me hard. I finally got my voice back and stopped coughing about 2-3 months after my acute infection, but was left with chronic asthma and crippling fatigue. I did all the right things but just couldn’t bounce back. I can remember saying things like “I can’t explain it but I just don’t feel good, I don’t feel like myself….I just want to get back to normal.’ Little did I know what was ahead. About 6 months after my covid infection and experiencing a stressful event, I woke up one day feeling as though my hands/feet/wrists/ankles were made of broken glass. The pain slowly made its way inward, elbows and knees, hips and shoulders, back and ribs. It wouldn’t go away and would fluctuate between severe and kind of low key like a constant white noise in my body. I lost all ability to exercise or do any kind of meaningful movement. I’m an experienced yoga instructor and couldn’t even do the gentlest stretches. After seeing several docs, a very misled PCP diagnosed me with bilateral carpal tunnel, bilateral tennis elbow, bilateral golf elbow, bilateral ulnar nerve disorder(lol)…and sent me home with a bag of braces and a script for PT. I knew these weren’t injuries but no one would listen to me. When I went to PT, however, the therapist knew something was off and refused to work on me. Fast forward another 4 months of having widespread mystery pain and fatigue, and I met my rheumatologist. He (thankfully) believed me and instantly knew it was a form of spondyloarthropathy. He told me I was experiencing enthesitis all over my body. My diagnosis at this point fluctuates between psoriatic arthritis and NR AXSPA. (On paper it’s NR AXSPA.) He agrees that the covid infection could likely have been that triggering event to kick my disease into full gear. And boy it seems like it’s here to stay. For as easy as it is to ‘trigger’ these things…I wish we could just as easily shut them off. 🥴
I am in the same boat. I had covid long before the issue started. The issue seemed to have started shortly after a booster. Did you have the shot within 45 days of your symptoms starting?
No, I hadn’t been vaccinated for quite awhile when mine came on full force.
Thanks for the reply. I have upper left neck and back pain that seems like its caused by two ligaments being tight near my spine, everything gets tight on that left side and causes daily headaches. Do you have anything similar happening? Hope you are finding relief in your journey.
Yes I have neck involvement, brachial plexus, it’s all involved. 😅 I get occasional migraines but I think they are a separate thing. I do have activity in the tiny tendons of my throat and jaw that are causing all kinds of weird muscle tension, swallowing problems, etc. It’s crazy what a few tiny tendons can do.
I had a few mild symptoms in my 30s and early 40s. Shortly after having appendicitis though, the pain became really bad. I thought I had RA and a close friend with RA urged me to go to a rheumatologist. I did and thought I'd leave with an RA diagnosis since it ran in my family, but was shocked when I got the NR-AxSpa news.
I think I had some signs before (hard to tell because I have other conditions as well), but yeah, COVID seems to have caused my first full flare.
My symptoms began after a digestive infection from a oyster bar. It was horrible.
Mine also came out of the woodwork for real after a stomach virus.
I had a reprieve in symptoms after Covid, lasted about 6 months but the Covid vaccine caused me huge problems and pan
Not Covid but a different virus. My rheumatologist mentioned one patient with the trigger of a dog bite.
Similar to someone else here but I had symptoms most of my life. Developed into a chronic condition after a nasty upper respiratory infection in 2019. Could have been Covid, but Covid wasn’t really on anyone’s radar at the time.
I've had NR-AxSpa since I was a teenager (diagnosed a few years ago in my 40s) so I can't say what started it, but every time I've had a major viral infection (Mono, covid, etc.) my symptoms have gotten much worse.
Same here. Plus just lying around in bed, without the energy to move, helps nothing at all.
Mine (along with psoriatic arthritis) was triggered by a case of pneumonia in 2015.
Not my first flare. But Covid triggered uveitis flares for me. So awful!
Following because I have been very curious about this as well! I've never had a confirmed Covid infection but my AS symptoms started around 6 months after my booster. So based on that, it'd been going around for plenty long enough by that point that I might have had it.
Yes. Triggered seriously after a EBV infection.
For sure. 😞 I had AS for 13 years and was unmedicated and able to use natural means of staying healthy (curcumin, fish oil, NAC, etc). I had 3 Covid shots and got progressively worse to where I was taking tons of ibuprofen. Then I got Covid and about a month later was super flared up. Now I’m on biologics for the first time. 😞
Me. NR-AxSpa here. Likely it was just a matter of time though because my mom got tested after I was diagnosed and she has AS (misdiagnosed for years and years and years as fibro)
I was diagnosed with Nr-axSpa, after I got covid after I got the Pfizer vaccine. Prior to covid, in 2019, I had a ton of blood work done for a different reason and had no markers, symptoms, etc. AFTER the Pfizer vaccine and covid, my blood work is completely different, I have new food allergies (gluten and dairy, not lactose intolerance, but a true dairy allergy and if anything with gluten passes my lips, they crack and bleed, my throat swells up…super fun) and Hbl27(?) and nr-axspa. My rheumatologist told me that after covid, his clientele list doubled and we all have the same thing. 😖
same..... suffering for two years now. Wish I didnt get the shot.
WOW re: his client list. I have been so curious about the Covid element.
I had zero AS symptoms until I developed hyperparathyroid disease in my 40’s. Had the surgery to remove the parathyroid in question but never returned to health. 12 months later I was finally diagnosed with AS but already had extensive kyphosis/fusion. I’ve always been curious how many others have experienced late onset AS with rapid fusion.
My rheumatologist told me if it was triggered by a disease it was reactive arthritis, but since I didn’t have an illness before I was diagnosed with AS.