Ankylosing Spondylitis: 6 Things I’ve Learned Since My Diagnosis

It’s been a long 20-something years…probably longer if I’m totally honest with you and with myself when it comes to symptoms. If I narrow it down, though, things have been horrid since just after December 2020 (right after I technically recovered from COVID that never seemed to really) go away.

Doctor after doctor, blood test after blood test, appointment after appointment. And I had no answers other than:

1. Verifying what I already knew: I am ANA positive, meaning that I have some sort of underlying autoimmune “thing” happening.
2. Learning that I was (and am) vitamin D deficient.

And Along Came Rheumatology

After multiple rounds of testing, my PCP believed that it was either seronegative systemic lupus (which I heard for years) without organ involvement or MCTD. I was referred to rheumatology.

I prepared for the worst: for the rheumatologist to tell me that there was nothing wrong with me. I’ve been to rheumatology before…and that’s exactly what happened. I had similar symptoms…but they didn’t last for 18 months.

My rheumatologist listened, reviewed all my blood work, my medical history (including the fact I had Crohn’s as a child…despite the fact I protested this inclusion because I had surgery in 2008 to remove part of my intestines and I’ve mostly been symptom free since). He barely touched me so I started to presume the worse. He then checked me for fibromyalgia…and I am negative. None of the “hot spots” bothered me. He asked about my hips and lower back. And then my neck and shoulder.

He ordered x-rays. And he prescribed Plaquenil (although he said we could go ahead and break out the “big guns...” I declined). He told me that I have enteropathic arthritis and axial spondyloarthritis, better known as ankylosing spondylitis. And apparently? I’ve had it for a good, long while despite finally learning I have what’s known as “non-radial” at least in my knees and lower spine. So, what does this mean? It means that I am less likely to have my lower spine begin to fuse into one giant bone that won’t bend. Super fun, right? I am at higher risk of breaking my back or neck (because it does affect my neck) than the average person who does not have ankylosing spondylitis.

So, now that I have finally been diagnosed and I’ve started treatment…and by the way, there’s no cure…and I’m a special needs mom, here are 6 things I’ve learned while starting to navigate my life.

Enteropathic Arthritis is a Form of Ankylosing Spondylitis

Since I started trying to figure out what was wrong, I kept insisting to my PCP and then my rheumatologist that whatever this is? There is no way that it can be associated with Crohn’s. Because…I had surgery goddamnit and I haven’t had any severe issues since! Well, unless I’m on antibiotics…and that’s rare. As far as I was concerned? I was practically cured!

I learned that while the worst part of my intestines might have been removed, Crohn’s disease does continue to impact me…and it can cause enteropathic arthritis. And enteropathic arthritis is a form of AS. Basically, the inflammation starts in the gut and attacks its way out for funsies.

Ankylosing Spondylitis Can Cause Gut Problems

Oh, and if you don’t have Crohn’s, UC, or IBS? AS can give it to you. AS can truly be the gift that keeps on giving. You can learn more about AS from The Spondylitis Association. They are a nonprofit.

The Fine Line Between Moving for Pain Relief and OH GOD I PRAY FOR DEATH

So, before all of this became so terrible, I was in great physical shape for someone with three abdominal surgeries:

1. A c-section in 2000.
2. A partial hysterectomy through the c-section incision in 2002.
3. An oophorectomy for my right ovary (which was the size of a softball) and partial removal of my intestines in 2008 through the c-section incision.

Good times, right? So, in case you haven’t heard…nice abs (society’s definition) are not easy to come by after multiple pregnancies. I wanted them for me…no one else. At the age of 40 and after heart problems (I had a congenital issue known as Wolff Parkinson White…that I hard surgery to correct but it failed along with afib, high blood pressure, and SVT), I got into fitness. I resolved my heart issues (technically I have WPW…but no issues) and high blood pressure.

With ankylosing spondylitis, one of the things we spondies are encouraged to do is move. One of the reasons for this is to keep our bones from fusing. However, it also relieves pain.

The problem, as I’ve learned, is that there is a very fine line between moving and doing to relieve pain and stay mobile and praying for the earth to open up and just swallow me whole. And that limit can change daily. I could have several good days, decide to vacuum, and then be unable to walk for a couple of days.

My Spine Wakes Up 2 Hours After I Do

The longer I sit or sleep, the stiffer I become. I am not the only one. It is the same for anyone with AS. So, after a night’s sleep…I get up and take my morning meds (Plaquenil, migraine preventative, and vitamin D), and then I literally have to sit upright somewhere for around an hour and a half or two hours.

Since I work from home as a copywriter, I have to get up often and move around. Some days, my right hip hurts so much that I cannot put any sort of pressure on it. That’s when my husband has to put together a bunch of pillows to keep my weight (all of 110 pounds) off of my hip but yet I still need to be able to see my laptop screen and reach my plug-in keyboard and mouse.

Mobility Aides Are My Friends

I’m only 43. I’ll be 44 this year. Despite the fact that I’m starting to feel better and have full days that I can do things on my own, I’m not tricked into believing that I’m fully well. There’s no cure. I have a cane. I have a walker with a seat (which works great in the kitchen for cooking…I can sit and reach everything). I also have a wheelchair so that we can go to the zoo, go to the gardens, and just get out and do things.

Chronic Fatigue Comes from Chronic Inflammation

Finally and most importantly, I learned that all of the fatigue has come from the nonstop inflammation. I’m tired because my body is constantly fighting the nonstop inflammation. Learning that the other day from The Spondylitis Organization’s Welcome Packet they sent me after becoming a member was an eye-opener for me. Knowing that the best thing I can continue to do is to take care of myself by resting when necessary? It’s a win.