I was diagnosed with FMS in about 1995. Migraines since teens or early 20's. Cervical spinal arthritis at 23. Also get recurring viral infections (ME?) and digestive probs. (sometimes severe paIn) Strangely, my brother and I were both dx'd (biopsied) with discoid lupus and told we had either SLE or Sjogren's by different rheumys in different states. He was also later dx'd with FMS. I've had several facet injections and 4 epidurals for pain from spinal arthritis, foraminal stenosis, many herniated disks, shoulder surgery and started going to a pain center.
Still not sure what kind of autoimmune disorder I have. The Rheumys around here don't seem interested in finding out or treating for it, even tho my QoL is obviously slipping away. I had to stop working as a software developer jan. 2014 because I just couldn't handle the pain and fatigue any more.
I was about 28 or 30 when I started to realize that the way I felt was proabably not normal. I became friends with a co-worker with MS and discovered I had similar neurological symptoms. That was what lead to the dx of fibro. Most of the countless visits with specialists I've seen over the years have been a waste of time, energy and money. The uncaring and dismissive attitude of some were very distressing to me which I'm sure contributed to my decline. Now, without the stress of trying to keep up at work I'm now focusing more on improving my Q of L through better self care by being kind and compassionate to myself and others. Things that help me today are my various meds, avoiding or managing stress, mindful meditation, warm baths, and listening to music. I still dread most Dr. appts. but still hope for accurate Dxs...not just for me, but for my kids.
2 for others
Dec 09, 2010
Oct 26, 2016