Carrie Wilcox

My name is Carrie Wilcox. This is 2018 and I am 40 years old. I was diagnosed with ankylosing spondylitis in 2015.

‘Don’t baby your hips. Wait until you get to be my age. Everybody has back pain’, sound familiar?  This pain started intermittently for me at 17 years old.

Like many others with ankylosing spondylitis years passed before I sought answers.  Because of dismissive comments such as ‘everybody’s back hurts’ and back pain runs in the family.  Why was I intolerant when it came to this pain and stiffness? Why was everyone else so much stronger towards pain than I was? How are they functioning so normally? Why am I such a baby?  These were questions I would ask myself.  So I would hide my pain and push through.

During a particularly rough time in my early 30’s I sought answers from my primary care physician for the, now, all over body pain.  At one visit, without imaging or blood tests, I was diagnosed with sciatica. Ice and rest.

When ice and rest failed I visited several specialists, reluctantly referred to by my primary care physician. There was a brain MRI, offered anti-depressants, was told nothing is wrong, you can’t be in that much pain, it would hurt anyone to be pressed like this. During that time I received a clinical diagnosis of endometriosis and was prescribed birth control. The doctor blamed endometriosis causing the pain in my legs, ‘I don’t know about your arms’, she says.  Wanting relief I pursued an exploratory laparoscopy. I had a few small patches of endometriosis removed and diagnosed with adenomyosis.  After the laparoscopy I went back to my primary care and she callously stated,  ‘that small amount of endometriosis wouldn’t cause that much pain. This is something you need to learn to live with.’  Then she added infertile to my chart. Later, miscarriages would prove that to be true.

Worse than living with a chronic illness is living with an undiagnosed chronic illness. Physicians and specialists that don’t find anything, vocally doubt you. That doubt is contagious and spreads to your loved ones.

Through the years I tried many at-home remedies; milk thistle, turmeric, Himalayan salt, hot Epsom salt baths, heat, ice, stretches, chiropractor, cinnamon & honey, aerobics, yoga, oils.  None of those remedies helped me sleep past the 4 hour mark at night. By my mid-30’s the back and hip pain was relentless, every single day and night. The pain and stiffness kept me up at night; most nights sobbing quietly in another room. Hiding a painful limp and pushing through life every single day.  I hid how much it hurt. I had to hide it because ‘nothing was wrong’. I feared being called a hypochondriac, again.

I was 38 years old when my leg began to swell.  So much swelling I couldn’t bend my leg.  Along with the stiffness in my back and hips, I also couldn’t turn my head.  Over the course of a few weeks the pain and stiffness consumed my entire body.  I could only manage a hunched over shuffle clinging to a crutch.  My regular doctor ordered blood tests and advised I try gluten and sugar free. I also received a rheumatologist referral.  As I waited the 6 weeks for the rheumatologist appointment a friend suggested it was gout. Searching for any type of relief I headed to urgent care. The attending doctor felt the heat coming from the swollen joints and ordered a parvo virus blood test.  A few days later the results were ‘positive for the parvo virus.’ She says that I needed to let it ‘run it’s course’ and I ‘no longer needed to see the rheumatologist’.  I was excited to have an answer, but I chose to ignore her advice keep the rheumatologist appointment.  I was scheduled to see the same rheumatologist that almost 10 years before told me during a pressure point examination that, ‘It would hurt anybody to be pressed like this.’ I had outward symptoms this time, swollen joints. He couldn’t dismiss me again.

The parvo blood test was read backwards, said the rheumatologist. I showed antibodies for the parvo virus, but not an active illness.  After an examination, blood tests, x-ray’s and an MRI I was quick to receive a diagnosis. The CRP blood test, which measures inflammation, was 10 x’s over the normal lab range at 104. The ESR, another inflammatory test, was 3 x’s over the range, at 48. HLA-B27 positive, which I don’t put much stock into as it is only a test for the gene. The x-ray and MRI revealed the hallmarks of AS with bilateral sacroiliitis, among other inflammatory results and permanent damage. What is so easy for me to see now and isn’t generally found in a quick google search is not only does AS cause back and hip pain, but inflammation of tendons, ligaments and large joints. That explains the un-diagnosable all over body pain I was experiencing all these years. I often wonder, how can so many doctors get everything so wrong? And be so confident?

Despite living with AS for this long I am still learning. I am also learning to slow down when I need to and pushing back the gnawing guilt for doing so. I am learning what medication regime works best so I can function, because living with untreated AS caused irreversible damage (bone spurs, erosion, sclerosis, scoliosis, bulging discs)  and a constant state of inflammation.  I am lucky. I am lucky that I am not fused in a hunched position. I keep active and keep my spine straight, so when I finish fusing at least it will be straight. I have a diagnosis, but that doesn’t put an end to people doubting the type of pain that comes with AS, comparison to injuries that heal, and dismissiveness. What a diagnosis does put an end to is holding my head up in the face of this cruel world.

To not have your suffering recognized is an almost unbearable form of violence. – Andrei  Lankov

Colorado, United States of America


One Response to “Carrie Wilcox”

  1. Dear Carrie,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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