I was diagnosed with FMS in about 1995. Migraines since teens or early 20's. Also get recurring viral infections (ME?) and digestive probs. (sometimes severe pain). Over the past few years 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 has also been dx'd with FMS. Strange, huh?
In the last 2 years I've had facet injections and 4 epidurals for pain from spinal arthritis, 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. Found a neurologist who seemed to care who ordered tests and found I had anti-MAG titers that might explain the peripheral neuropathy (MAG = myelin associated glycoproteins). But alas, he retired and I think the other docs Are waiting for me to fall down before looking into it.
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 some of the same symptoms. Most of the countless visits with specialists I've seen over the past 20 years have been a waste of time, energy and money. The uncaring and dismissive attitude of some probably contributed to my illness(es).
Things that help me today are my various meds, avoiding or managing stress, mindful meditation, warm baths, and listening to music. I dread all the Dr. appts., but want to get accurate Dx...not just for me, but for my kids. Some day maybe I'll just give up and quit going.