My Peripheral/Axial Spondyloarthritis & Psoriatic Arthritis Story

Posted by alisamichelle1092 @alisamichelle1092, Jun 10 7:36am

Hi, y'all,

I've been dealing with back pain for more than 30 years. I've had three surgeries: MicroD with laminectomy L4-S1, PLIF with instrumentation at those same levels and my left SI joint is fused.

I was very young when I hurt my already compromised back in 1990. I was trying to learn how to rock climb and took a couple of small falls from about 5ft up. I landed on my feet but my back was already weak. The shooting nerve pain started about 10 minutes later and hasn't stopped since.

After a few days I went to the ER because the shooting leg pain was relentless. Back then, MRIs were few and far between, especially if you were young and female. The ER doctor said I strained a muscle and sent me on my way.

What followed was 12 years of constant pain and then eventual leg weakness, foot drop and numbness in my left leg. I also couldn't stand up straight but leaned slightly forward and to the left. After a particularly brutal flare I demanded an MRI. I had surgery a few months later which left me completely unstable with worsening weakness and loss of feeling in my left leg. I had severe stenosis from ruptured disks and serious nerve root damage from years of nerve compression.

I had my major surgery in 2005. My surgeon spent extra time removing heavy scar tissue on a few nerve roots because they were completely adhered to other tissues. My surgeon said the big ligament that runs down the back, the ligamentum flavum, belonged in an 85yo who worked construction his whole life. He said he'd never seen anything like it in someone so young. I was 35 and this should have rung alarm bells.

I did improve for a few years, by about 80%, and was able to function at a much higher level than before but it was only three years before my pain levels started to increase again.

In 2018 my left SI joint was fused. I was having weird symptoms not related to my back but my spine was the largest problem. I kept getting sicker and sicker. I went to different specialists and they just said I had failed back surgery syndrome and lots of arthritis. I knew something else was going on and kept saying so. By the time the pandemic hit I was almost completely homebound.

Until 2022, that is. I went to see a new eye doctor because of issues I have with my eyes. He told me he thought my eye problems were autoimmune related. No one had ever said this to me before. I went home and Googled autoimmune eye diseases and found some call Sjogren's syndrome. The disease fit me perfectly. I saw my primary doctor a couple of weeks later and asked him to run tests for autoimmunity. A month later, the results showed that I had very high autoimmune antibodies in my blood. So high that I was in front of a rheumatologist five weeks later. Normally, it takes months to get in to see a rheumatologist.

I was diagnosed with peripheral and axial spondyloarthritis: psoriatic arthritis with axial spondylitis. This was confirmed with MRI.

The thing is, there were SO MANY SIGNS. I was having MRIs all the time that should have caught someone's attention. But no one was looking. I'm 55 but my spine is 90. So much damage has been done. I even have ankylosing on top of where I'm fused.

I'm happy that I have a diagnosis and that I am now being treated correctly. Luckily I was subclinical until the past few years. That means I was only really taking damage during periods of flares as opposed to now where the disease is very active and attacking my spine and other joints all the time.

I'm definitely a back pain warrior. And I've been in this fight for a long time. My best advice is to keep moving. And don't give up if you can't get any doctors to take you seriously. Ask questions. Learn from reputable sources online.

My disease has spread to my hips, hands, elbows and feet. Yep, it hurts. But it could be worse. There is always someone who has it worse. I embrace the life that I do have and live it to the fullest that I can even in my disabled state.

Anyway, thanks for reading. I hope my story might click in someone else's mind and perhaps lead them on a path to diagnosis and healing. Be well, everyone.

Interested in more discussions like this? Go to the Spine Health Support Group.

Your post tells us to be persistent when we thing we are getting incomplete or incorrect information - to find another doctor, to search for answers, to be our own best advocate. Thank you for posting and may you have as pain-free a life as is possible.


Your generosity is greatly appreciated, alisamichelle.

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