Speaker A
Hi guys, welcome back to my YouTube channel, or welcome if you're new here. My name is Jillian, and we are doing a different type of video today. So this is more of a sit-down and chat, which is not what I typically do.
Jillian shares her journey of being diagnosed with ankylosing spondylitis, a chronic autoimmune disease affecting her dance career and daily life.
Key Takeaways
- Ankylosing spondylitis can be difficult to diagnose due to symptom overlap with common injuries.
- Persistent and worsening pain should prompt further medical investigation beyond initial assumptions.
- Managing a chronic autoimmune disease while maintaining an active lifestyle is challenging.
- Patient experiences and stories can provide valuable insight beyond medical literature.
- Early diagnosis and treatment are important to manage symptoms and maintain quality of life.
Summary
- Jillian was diagnosed with ankylosing spondylitis about a month ago after experiencing symptoms for 2-3 years.
- She describes the pain in her spine and sacroiliac joints that initially was intermittent and worsened over time.
- Her symptoms were initially misdiagnosed as SI joint sprains and residual pain from fractures.
- She underwent multiple doctor visits, physical therapy, x-rays, and MRIs before receiving a proper diagnosis.
- Jillian is a college dance major and continued dancing 35-40 hours per week despite the pain.
- She was prescribed anti-inflammatory medications like meloxicam and naproxen to manage symptoms.
- Her pain significantly impacted her ability to walk and perform wide ranges of motion.
- Jillian emphasizes that the video is not medical advice but a personal story to help others understand the disease.
- She expresses difficulty finding relatable content about ankylosing spondylitis from other patients online.
- She plans to share more about treatment and how the disease affects her dance career in future videos.
Full Transcript — Download SRT & Markdown
Speaker A
but i hope you guys find this useful helpful or just interesting if you're curious on what is going on my life so recently about a month ago i was diagnosed with ankylosing spondylitis which is a chronic autoimmune disease
Speaker A
But I hope you guys find this useful, helpful, or just interesting if you're curious about what is going on in my life. So recently, about a month ago, I was diagnosed with ankylosing spondylitis, which is a chronic autoimmune disease.
Speaker A
i can do that in a separate video just let me know down in the comments and i can do that so this video by no means is any health advice expert advice this is all new to me so
Speaker A
And this video is just going to be kind of how we came to that diagnosis. If you guys would like a video on how I have been doing treatment, or if treatment's been working, or how it's been affecting my dance career,
Speaker A
i just wanted to see how other people felt about this disease but i really could not find a lot on youtube or really on the internet versus what like i mean medical sites had to say so from my research slash going to the
Speaker A
I can do that in a separate video. Just let me know down in the comments, and I can do that. So this video by no means is any health advice or expert advice. This is all new to me, so
Speaker A
basically i would say probably starting two years ago even maybe three if we're going on and off symptoms i had a ton of pain in my spine and in my sacroiliac joints which are basically the joints that connect your
Speaker A
I'm just kind of letting you guys know what I know. And I know when I was first diagnosed, I was kind of going down the YouTube rabbit hole of what does this mean for me, what does this make my life look like.
Speaker A
them now i was dancing i still am dancing about 35 to 40 hours a week so of course like it makes sense just to have injuries and i went with that one million percent because it would make sense i'm dancing a ton of hours
Speaker A
I just wanted to see how other people felt about this disease, but I really could not find a lot on YouTube or really on the internet versus what, like, I mean, medical sites had to say. So from my research slash going to the
Speaker A
symptoms really weren't getting better so i would say for the first year the symptoms were very on and off very random like they would come and go so i would just attribute that to me not doing my pt exercises
Speaker A
doctor's office multiple times, ankylosing spondylitis is basically a chronic autoimmune disease where your body attacks its healthy joints, ligaments, bones, tendons, things like that by mistake because your immune system is too active. Um, so to start this all off,
Speaker A
they would be here for about a month or two and then subside for about a month or two and um i kind of started seeing more specialists then kind of doing some more x-rays mri stuff like that um so quite a few years ago i broke my
Speaker A
basically, I would say probably starting two years ago, even maybe three if we're going on and off symptoms, I had a ton of pain in my spine and in my sacroiliac joints, which are basically the joints that connect your
Speaker A
now so quite a few months ago the pain when i first started my first week of school was horrible um i am a dance major in college so i'm active a lot and the pain was excruciating so the
Speaker A
sacrum to your pelvis. Um, and I went—this is so—I went back to an athletic trainer, and I kept getting diagnosed with SI joint sprains, which was so strange to me because I was never doing anything to specifically strain them or sprain
Speaker A
then i went to my primary care doctor and i was put on moloxicam naproxen and something else kind of to alternate between because that's not good for your liver but basically there's a strong anti-inflammatories and those worked for me for the most
Speaker A
them. Now, I was dancing; I still am dancing about 35 to 40 hours a week, so of course, like, it makes sense just to have injuries. And I went with that one million percent because it would make sense. I'm dancing a ton of hours,
Speaker A
four nights a week so i was still doing a lot um come thanksgiving break i was getting to the point where i was like this is not like normal this is not right like something is wrong so i took of course we got off for
Speaker A
so it makes sense to have some injuries or overuse injuries. Um, but that's kept what I was being told. Um, I was doing PT, I was icing, I was taking ibuprofen, I was doing all the things, but the
Speaker A
point i could not do anything that was like remotely wide ranges of motion like every time i put weight on my left foot walking forward i was in excruciating pain so come december i did not dance for that entire month i took that entire
Speaker A
symptoms really weren't getting better. So I would say for the first year, the symptoms were very on and off, very random, like they would come and go. So I would just attribute that to me not doing my PT exercises
Speaker A
and in february it was like my breaking point like there was a day i just remember being in tears like walking i could not walk it was so bad and i did not know what to do and i like
Speaker A
enough or well enough. So I would always go back to that. But I would say starting probably the second year into really having these symptoms, it was more consistent. The pain was worse but still come and go.
Speaker A
three times a week because i was desperate and tried anything um for probably a solid two months nothing got better um i then i finally went to the family care doctor and i made my mom come with me and we
Speaker A
They would be here for about a month or two and then subside for about a month or two. And, um, I kind of started seeing more specialists then, kind of doing some more x-rays, MRI, stuff like that. Um, so quite a few years ago, I broke my
Speaker A
no i don't think anything's broken so but i was like i i literally was like i'm not leaving here until you do something so i think out of like just like annoyance he referred me to an orthopedic surgeon
Speaker A
back tumbling, and so a lot of the doctors were like, "Oh, it's probably residual pain from the fractures in your spine." So again, I was like, okay, yeah. So I would say starting last August, so about what is it now? It's June
Speaker A
couldn't do anything i could not lay on the like lay on a bed and get up like this is it was bad so i finally went to the orthopedic surgeon the next week and i got an x-ray and there was bone spurs in my
Speaker A
now, so quite a few months ago, the pain when I first started my first week of school was horrible. Um, I am a dance major in college, so I'm active a lot, and the pain was excruciating. So the
Speaker A
like they're just like oh you dance you have pain great here's some ibuprofen you're like okay solid that can't be my whole life um but i feel like he actually did care a lot like he really went into
Speaker A
pain's been like this before though, and I always just took a bunch of ibuprofen, kind of ice, and I still pushed through the pain. So that was fine for about the first month of school starting. The second month, it started to get worse. So I was
Speaker A
be fixed so i went to the orthopedic surgeon and he said based on my symptoms he didn't think it was like a bone or like ligament problem um and he thought it was more inflammatory related so he decided to send me to a
Speaker A
then I went to my primary care doctor, and I was put on meloxicam, naproxen, and something else kind of to alternate between because that's not good for your liver. But basically, there's strong anti-inflammatories, and those worked for me for the most
Speaker A
i was able to get a cancellation the next week which was wonderful and i went to the rheumatologist's office and i sat down and they asked me if the resident could talk to me i just thought it's experienced and i was there already
Speaker A
part. Um, I dulled the pain, but the second it wore off, the pain was right back. So at that time, I was assisting for conventions, I was taking class in college, I was dropping classes at the studio, I was teaching
Speaker A
through the entire nine yards again symptoms medical history kind of all that stuff and she again thought i had ankylosing spondylitis which up until this point i had never even heard of um just if you're curious my main symptoms i mean i had more pain
Speaker A
four nights a week, so I was still doing a lot. Um, come Thanksgiving break, I was getting to the point where I was like, this is not normal, this is not right, like something is wrong. So I took, of course, we got off for
Speaker A
things but so after that um ankylosing spondylitis can only be like diagnosed i guess with some blood tests if you have like certain inflammatory markers in your blood um if you have a gene called the hovv27 gene if i remember correctly that could
Speaker A
school first. Um, Thanksgiving break, I took that time off, and nothing got better. But we were only back for a week before we were back on Christmas break, so I danced that week. Um, I definitely was modifying at this
Speaker A
blood tests to be done just based on what she needed um they did a lot of like other tests too because she was pretty certain that this is what i had based on all my symptoms she said i'm basically the
Speaker A
point. I could not do anything that was like remotely wide ranges of motion. Like every time I put weight on my left foot walking forward, I was in excruciating pain. So come December, I did not dance for that entire month. I took that entire
Speaker A
because if you're diagnosed with this disease you have to be put on certain medications that um kind of weaken your immune system so you can't have like hepatitis or kind of like all those things that make it really dangerous to be on these
Speaker A
time off. I was like, if it's an injury, I just gotta kick it in the butt. I hate taking time off, but this is the time to do it. So coming back in January, the pain had not gone away.
Speaker A
knock them out of the way i get in there and i've always had my blood drawn like you know two or three vials and i've been good i felt nothing so i get there and i'm on like six and i
Speaker A
And in February, it was like my breaking point. Like there was a day I just remember being in tears, like walking, I could not walk. It was so bad, and I did not know what to do. And I, like,
Speaker A
and he's like are you good and i was like yeah just keep going because i don't want to come back and do more blood tests so i was like just get it done probably on eight i was knocked out i
Speaker A
of course, the professors at school, I think, I mean, they were kind of understanding, but at the same time, he was just like, they were like, okay, like, come on, Dan. So I started going to the chiropractor. I went to the chiropractor
Speaker A
your blood sugar i drank it whatever um so i left the hospital that day it was fine and the next week i went in for my mri so i got my mri um i think on a thursday it was actually
Speaker A
three times a week because I was desperate and tried anything. Um, for probably a solid two months, nothing got better. Um, I then I finally went to the family care doctor, and I made my mom come with me, and we
Speaker A
moloch's cam and stuff to try to block the pain but it was it was it was definitely a week i got through it but it was a week um so i had my mri on a thursday and i
Speaker A
were like, something is wrong, something is not right, like I'm in so much pain. So, and he was under the impression, like he was like smack on your heels, he's like, no, I don't think you have a herniated disc,
Speaker A
morning at like 8 a.m so i took it and i got in and the lady was like yep so you have it which i assume because they scheduled an appointment like so quick i've never had an appointment scheduled that quick
Speaker A
no, I don't think anything's broken. So, but I was like, I literally was like, I'm not leaving here until you do something. So I think out of like just like annoyance, he referred me to an orthopedic surgeon.
Speaker A
was going on um i feel like so many times i was put to like you're a dancer you're gonna have pain i just felt like people didn't like realize how bad it was like i was telling them like how bad it was but no
Speaker A
So I don't know, at this point, I was just like, anything, give me something because I could not handle anymore. I was so upset because I was like, this is ruining my dance career. I didn't know what to do because I
Speaker A
something was wrong and it kind of has a potential fix so from then on i was put on humira i'm still on humira currently but humira is basically an injection pen and you just give yourself an injection and
Speaker A
couldn't do anything. I could not lay on the, like, lay on a bed and get up. Like, this was—it was bad. So I finally went to the orthopedic surgeon the next week, and I got an x-ray, and there were bone spurs in my
Speaker A
and i it's just right there um but you basically give yourself this injection um twice a month or every other week and yeah so i learned how to do it in the doctor's office that day and was sent
Speaker A
pelvis and in my spine. And kind of I talked to him for like a solid hour. He was actually a very, very good doctor, I will say, because I feel like I've been around the ringer with doctors. Like a lot of times, I feel
Speaker A
like that would be a different situation but my it's pretty easy it looks like an epipen and you literally just put it on 90 degrees push the button on the end it stabs you with the needle and you wait for the medicine to go all the
Speaker A
like they're just like, oh, you dance, you have pain, great, here's some ibuprofen, you're like, okay, solid, that can't be my whole life. Um, but I feel like he actually did care a lot. Like he really went into
Speaker A
literally dancing before without it because i felt like a new person it's probably the best thing that's ever happened to me um i have my next follow-up since starting the medication in like four days so that's exciting the only thing that i've noticed with
Speaker A
my symptoms, my background, my history, kind of all that stuff, which I really appreciated because it was the first time I felt like someone was kind of listening to what was going on slash like what I needed to
Speaker A
freaking amazing for me i love being on it like it just my body feels so much better oh and then the only other symptom i've had is when i got sick i was sick for so long because it takes
Speaker A
be fixed. So I went to the orthopedic surgeon, and he said based on my symptoms, he didn't think it was like a bone or like ligament problem. Um, and he thought it was more inflammatory related, so he decided to send me to a
Speaker A
was never going to get better but it finally went away so that's just another like kind of like a cautious situation um so i'm fingers across that nothing bad from this kind of like hive reaction comes from this i'm hoping it's just one
Speaker A
rheumatologist. Well, at the time, I had no idea what a rheumatologist was. I was just like, okay, I'm being referred to another doctor, great. So I went to the rheumatologist. Actually, so the appointment was supposed to be three months away, but
Speaker A
a look into what's been going on um i want you to know that you're not alone if you are also facing this if you're in this amount of pain all the time please go to your doctor tell them that something is not wrong
Speaker A
I was able to get a cancellation the next week, which was wonderful. And I went to the rheumatologist's office, and I sat down, and they asked me if the resident could talk to me. I just thought it's experienced, and I was there already,
Speaker A
to heart sooner so then i could have been doing this for a long time because i know my entire year of college as a dance major that year was kind of blown i feel like i gave up so much dance like that i could
Speaker A
so I was like, yeah, sure, whatever. So I was talking to the, um, resident, and basically we went through the whole nine yards. She came in, she thought I had ankylosing spondylitis. Um, next the doctor came in, and we went
Speaker A
because i'm young or because i'm a dancer because i'm an athlete i think things get looked at less seriously or a bit put back on an injury and it's not always the case so if this is you or if you feel like you're kind of
Speaker A
through the entire nine yards again, symptoms, medical history, kind of all that stuff, and she agai—
Speaker A
when i got an answer so yes um i feel much better i was in a bad place for probably six months like mentally physically everything wise i was just struggling because i could not do what i loved um coming
Speaker A
back on it now like i do like i feel like i grew as a person as a dancer because it made me realize how much i loved it and how much i missed it but back then that was not the case i was so
Speaker A
upset all the time i was so sad all the time i was so angry all the time i just it was not a good situation so i hope this kind of gives you insight into what's been going on for
Speaker A
the past year or so and kind of where i've been but more so i hope if you're going through something similar that it helps you get through it get some answers and hopefully feel better until next time you guys i'll see you
Speaker A
later bye
Topics:ankylosing spondylitisautoimmune diseasechronic illnessdance injurysacroiliac joint painautoimmune diagnosischronic paindancer healthphysical therapyanti-inflammatory medication
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