Finally a Diagnosis

I have suffered with back pain for 25 years, with multiple visits to doctors, to only be told endless times that there is nothing medically wrong to justify my pain. The pain is not constant and intensity varies daily. I like to think that I have a high pain tolerance. I do not like to take medication and strong pain meds knock me out. I am a mother of two and an ER nurse, so I have to be able to function clearly.

Another pain, another diagnosis

The first of my struggles started in 1999 when I was trying to conceive and could not. At that time I was diagnosed with PCOS and had to go through fertility treatments. My first child ended in a miscarriage, followed by the birth of my oldest son. Five years later, I was blessed with another son and two years after that a miscarriage.

In 2014 after visiting my eye doctor for frequent headaches, I was diagnosed with pseudotumor cerebri and started medication for that. I continued going to doctors trying to figure out why I was having so much lower back pain and neck pain. Then in 2016, I started having pain in my leg when I was pregnant with my second child. They diagnosed me with sciatica and sent me thru therapy with no relief. Fast forward to January 2017 -- I was having headaches daily with increased neck pain and had a lumbar puncture. This resulted in a leak of spinal fluid causing even more severe headaches. I had to go to the University of Iowa and have a blood patch to fix the leak.

Finding the cause: ankylosing spondylitis

It wasn’t until February 2017 that I saw a rheumatologist who was determined to find the cause of my pain. He ordered 18 tubes of blood work which lead to a positive HLA-B27 and a diagnosis of ankylosing spondylitis. He started me on Humira monthly, later increasing it to twice monthly. It does take the edge off. Otherwise, I just use Tylenol for the pain and get toradol injections at my doctor visits.

I use to be a stomach sleeper, but as this disease process has progressed, the only position of comfort is on my back. If I try to lay on my sides, I have excruciating hip pain. Getting up to walk after sitting for a while is the worst, my joints don’t want to cooperate and it takes a little while to get loosened back up and walk normally. I have been in a flair this summer and my Humira was increased to weekly. My joints all hurt, especially my fingers.

Today, finding comfort isn't easy

The struggle for me is that I don’t think most people understand how you say you can be in so much pain but still be active. I am very active outside with mowing, weed eating, and gardening, and I have many flower beds. I often hear them say that if you can do all that, you must not be too “sick." This is what keeps us limbered up and not let our joints freeze up so that we continue to live some sort of a “normal” life.

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