44 Years To Diagnosis
I had my first low back pain “attack” at 14. Doctors gave me pain meds, muscle relaxers and said go home and use a heating pad. That one lasted about two weeks. Pretty sure that’s where it all began. Had multiples of these throughout my 20’s and 30’s.
I was diagnosed with RA and Sjogren’s in my late 40’s after going through the usual docs and rheumys who said everything from muscle strain to it’s just stress. I have had IBS since my 20’s. I have also had migraines, foot pain (several foot surgeries) and random joint pain for years.
For the past few years I have been complaining to my docs about low back and hip pain and my Orthopaedic has given me Kenalog shots for the past 2years.
A few months ago I saw a neurosurgeon and had an MRI of my lumbar spine, which showed only a few mildly bulging discs and some arthritis in that region. However, as an incidental finding it was noted that I had stenosis in my T-10/T-11 vertebrae and it could be pinching a nerve. So, back for an MRI on that section and a laminectomy and fusion in early November, 2020.
I was healing great at 4 weeks and then at 5 weeks developed severe pain and stiffness in my lower back as soon as I woke up every morning. I could barely get out of bed and had to hold onto the walls and furniture to walk.
Finally diagnosed with ankylosing spondylitis
This would ease up about 30-45 minutes later and would be almost bearable as the day moved on. Surgeon said it was unrelated to the surgeon and sent me to a physical therapist, who found my core, legs and hips to be very weak.
Went to my PA and she said she thought it could be ankylosing spondylitis. Had an appointment same day with rheumy (previously scheduled) and she believes that it is that. I’m devastated! I go to have an MRI of my hips and pelvis in a couple of weeks, and we are awaiting insurance approval for a biologic.
Do you use the word disability to describe your AS?