Started having pain in SI joint early 30s but pain management said it was my lower lumbar even burned nerve in that area along with steroid shots that never helped? Fast forward to the age of 45 diagnosed with fibromyalgia and osteoporosis always in pain doctors treated me like a drug seeker was very depressed I thought I must be a wimp and that everyone who had back pain was in the same situation as me? That’s what was crazy the doctors had me thinking I was crazy! Then at 50 started having these sores blisters and told me it was adult acne I knew better but believed the doctor again? Looked like a monster then my neck that had always hurt me slept without a pillow for years started having excruciating pain one shoulder was higher then the other MRI showed I needed surgery a cervical fusion my spinal column was pinched By that time couldn’t even hold a cup in my hand or stand or walk for any amount of time. St the same time my fingers were crooked looked like swollen sausages and had dents in my nails...still broke out and scars on my face from years of blister-like sores.
Went to my first rheumatologist said it was osteoporosis then I went for second opinion to another rheumatologist and special disease doctor ran the test for RA and lupus. Didn’t have it. Then they asked me if I was stiff in the morning when I woke up...said yes takes like an hour to get around in the morning. Then they said we think you could have Ankylosing Spondylitis - had the gene all along. Did cervical fusion so far a success...was started on Enbrel after a while stopped working. Then on Humira weekly to many fungal infections so now Humira every 14 days and the blister-like sores were from an inflammatory skin disorder on meds.
I am 56 years old! People and doctors need to know more about this disease and bring awareness to it so no one has to go through what I did? Also, I suffer from pain constantly if I wasn’t prescribed hydrocodone I couldn’t function to live! That’s another thing I am dealing with right now - doctor doesn’t want to prescribe them to me anymore because of the laws in place about opioids? So don’t know what my future is going to look like now?
Do you use the word disability to describe your AS?