Apparently this started in high school when I was running on the cross country team and had difficulty with low back, rib, and knee pain. I had horrible stomach aches and my diaphram would cramp up making beathing difficult. I was tiny and weighed about 85 lbs and most of that was muscle weight and ate constantly. When pain took away my appetite, my parents became concerned. Xrays, upper GI, lower GI, test after test…diagnosis? Constipation. Uh what? Then I was told I had Osgood Slaughter’s disease and had to stop all physical exercise or destroy my knees. Then I was told it was a spinal spiral due to over strengthening of one side of my back muscles over the other (gymnastics was blamed) and I saw a chiropractor 3 times a week for 2 years. They claimed that answered every complaint by pinching nerves and reducing the flexation of my ribs. I quit sports and was careful with activities that caused symptoms to flare up.
Years later my low back pain became an issue again and I suffered migraine headaches. I was then told I returned to work too soon after childbirth and caused my hips to jam at the SI and my headaches were due to my neck having an extra curve jamming my spine against my skull.
Again, chiropractics to relieve symptoms and modification of activites…like sitting more and standing less .
This worked for many years as long as I managed sypmtoms and was careful to vary rest and activity but each year it got harder and harder to sleep well and even more difficult to physically get out of bed. I had to lift up my hips to scoot to the edge then basically roll out of bed feet first to be able to catch myself then push up to a standing position. Tying my shoes became a huge chore and my family blamed it on my weight gain (which I blamed on low activity levels.)
So, when the opportunity arose to get into a physically active employment position in 2012, I jumped on it and fell flat on my face.
I expected some muscle pain and exhaustion due to being out of shape…I was 46 and had been doing desk work for 12 years. But 6 months into my new job the pain and exhaustion was increasing…to the point that I had a double kidney infection and did not know it. I hurt…everywhere! I was seeing a chiropractor/sports medicine specialist twice a week for the back, shoulder, knee, ankle, and foot pain. He told me the issues were too systemic to be normal and suggested something else was going on.
Well, family history suggested auto-immune…mom died of poly arteritis nodsa in 2003 and since then my brother and 2 sons had been diagnosed with AS…but in 2003, I was told it was unlikely that I had it since I was female and my issues were most likely just caused by IBS with constipation and the things I had been told in the past.
Well, to get to the point, I have AS and Scleroderma. My new and wonderful job woke up my AS and put my pain and exhaustion on overdrive.
My PA at my rheumatologist’s office keeps insisting my active job is helping yet I am becoming more and more unable to do anything. I am no longer able to manage stairs or walk without a limp because my right leg will not move past my left one.
Anti-inflammatories do nothing for my pain, but add regular burping to my daily activities. Pain killers and muscle relaxers can only be taken when I am not working and have become a daily need. Humira made everything worse and I got increasing injection site reactions. I am now taking Enbrel which helps relieve the stiffness but the pain is not relieved…just stopped from accelerating as long as I do not go to work. I qualified for FMLA leave which allowed me to work what I could, so I tried shorter shifts, but that did not work either and pain was often the only thing keeping me awake for my commute when exhaustion was all encompassing after just a few hours. I am now on full FMLA leave but that does not include any income to continue my medical insurance and prescription plan.
I tried Vocational Rehabilitation and the intake couselor told me to apply for Social Security because he did not see a work solution for me.
I am 48, I have AS, I have shortness of breath issues, have chronic pain and debilitating exhaustion…but I am still fighting and trying to live my life, day to day…some are better than others
Idaho, United States of America