20 years to Diagnosis
Last updated: November 2021
During my pregnancy with my second daughter, I developed such excruciating back pain and SI joint pain by 10 weeks. I would fall all the time. I couldn't turn in bed without extreme pain and assistance from my husband. I ended up in a wheelchair and on disability for 15 months. I was told it was an overproduction of a hormone called Relaxin, and it would go away after my baby was born.
That didn't happen. Instead, I went through tons of tests to rule out many conditions. I was told by one Dr it was Psychosomatic, which crushed me. Anybody that knew me knew I was a go-getter. I loved to work, Loved to shop! Loved my family. Nothing kept me down...but this sure did. I was left with "it could be Multiple Sclerosis but may not fully present itself for years." I did eventually go into remission after many drugs, physical therapy, and many prayers. The next 19 years were better with only intermittent pain and occasions of "dragging" my left leg when I walked, but I pushed through and did pretty well...until a year ago. Because of my experience with trying to get a diagnosis years ago and being labeled Psychosomatic, I tended to ignore things and just handle what came my way. Then at a Dr appointment for something unrelated, I stood from my chair and apparently grimaced - which I guess I had been doing but ignoring - my Dr touched my hip, and I about flew out of my skin. I told him I didn't know why but I have been experiencing trochanteric bursitis in both hips. My SI joints were also very tender to touch. He put me on Prednisone which was incredible, and my pain greatly diminished, only to come right back when he weaned me off. He referred me to a rheumatologist, who I'd seen several of in the past.
This one was different. He listened. He was empathetic. He discovered the sore on the back of my head, that I thought was from an allergy to something in my shampoo and had been trying different brands, but it was actually scalp psoriasis. This was the beginning trigger for finally obtaining the Dx of Psoriatic arthritis. I had labs showing elevated Sed rate and CRP, X-rays. Methotrexate and Prednisone were my first treatment along with PT. I again got to the point I drug my left leg and hurt so bad to walk that I used a wheelchair and walker. I gave up my job as a nurse in a wound clinic because I could not stand and bend like that anymore. Unfortunately, the first drug regime was not effective enough, so against my desire, I did start a biological, Humira. I am walking without the aid of anything. Most days now my pain is very minimal-- like a 1-2. I have started my own Medical Supply company still utilizing my nursing knowledge and doing what I love but allowing me flexibility should I have a flare. I'm amazed how well Humira is working, although my goal is to hopefully be able to find something - dietary changes, exercise - something to get me off drugs. Long term effects scare me, but I'm grateful and happy to have my life back! And my family is happy to have me back. I am 51 yo and too young to be stuck in a wheelchair, although I know many people are and my prayers go out to them to stay strong and positive and don't give up!!
Do you usually need to recover from a vacation?