“Progessive disease”

I have been suffering with back pain for months. I told me GYN about it, he said it was likely the two cysts I currently have on my ovaries. Valid argument. The primary care doc told me to take tylenol and stretch. He said it should go away soon enough.

I started stretching and moving around more. Even changed the chair that I regularly sit in and I started using my stationary bike more often to see if that would help. No dice.

I decided to pay more attention to the pain and what made it worse and better. I found walking around was fine, bending over was fine, even sitting or laying still in bed was fine, but the act of getting out of the chair, or rolling over in bed, made me cringe. It wakes me out of sleep. It’s a dull ache and it sucks.

This is a new symptom

I had an appointment with my rheumy today. I told her all about it and she was the only provider that seemed interested. She asked me specifically what the pain felt like, what I had done to treat it, if I had any history of back pain or injury. After I answered her questions, she had me lay down, stand, bend my knees and do all sorts of other jazzy movements. All that was missing was a tophat and jazz hands (AKA spirit fingers). She pushed down on a certain spot just adjacent to the right of my spine and my eyes crossed in pain. She found it!

One thing I noted was she kept referring to it as sacroiliac joint pain. (I made a mental note to research that when I got home).

I’ve had a feeling of dread in my stomach since the second month of pain and I’ve been researching back pain since last month. I’ve seen everything from your standard muscle spasm to cancer.

She sat down after examining me and looked down at her hands for a moment before her eyes met mine.

She spoke of getting an MRI and getting her hands on a copy of the CT scan my urologist ordered that I get next week. I knew from her tone that this might not just be back pain and it could be something new in the story of my health issues. She explained that based on the MRI and CT scan, this may be a new symptom, and therefore the next step in the progression of my autoimmune disorder.

I’m almost not surprised at the idea. I’ve never been “textbook” with any health issue. My first rheumatologists told me it might take years before I progress to the point where I get a solid diagnosis. I’ve heard everything from Lupus to RA to fibromyalgia, to Reynaud’s and back. But what really frightens me, is that if this pain is the next step…it’s possible that I have a potentially disabling disease that hadn’t even been on my radar. Ankylosing spondylitis.

In case you’ve never heard of it (like me) it is a progressive disease of the spine. It causes inflammation and pain that usually starts down in the sacroiliac joints (lowest pat of your spine that meets with the pelic bone) and can progress upwards, even affecting the ribs and lung capacity. The infammation/ calcification process can cause fusing of the bone, therefore disabling the person. But that is worst case scenario. With treatment and life changes you can slow down and even sometimes stop the progression.

I’d also like to point out (in faith) that even this pain I’m experiencing isn’t textbook. Apparently people with this issue take longer to recover from the pain and stiffness than I’m feeling. It’s possible this pain is something else entirely and we are barking up the wrong tree. That being said, even the MRI and CT scan might not catch anything and give us a false negative.

I’m trying to keep hope alive

Although, I have to admit, between the worry and the pain, sleep is eluding me and I’m back to using medicinal marijuana and sleep aid to get any rest. :/

Has anyone heard of this, have this, or have a loved one with it? I’d love to hear of any good outcomes and/or first hand experiences!

<3 with love, light and friendship,


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