Michelle - I have dealt with this illness for 25 years, and led a large support, speaker based group at the local hospital for 13 years. My background is clinical diagnostic microbiology. Enough said - appreciate I am a careful observer, researcher. I had an article published in Fibromyalgia Frontiers in 2008 - " Pelvic and sacral Instability: A facet of Fibromyalgia." Viruses/Lyme disease are important considerations - but why are some affected and not others ? My son developed the pain/fatigue syndrome at age 5 after a well-documented EBV infection from pre-school. My Mom had this disorder. I developed it after a neck/pelvis injury in 1999 - age 49. Was disabled. Totally bed-ridden one year.
After years looking carefully, and several appointments with neurosurgeons ( wonderful !!! neurologists - no help), i discovered certain important things: I have a mild scoliosis, hypodevelopment of the sacrum, probable tethered spinal cord, Chiari 0 ( expert neurosurgeon diagnosis - I had a CINE MRI flow study ).
I have higher that normal intracranial pressure - may have Ehlers Danlos hypermobility. Also, loss of lordotic curve in the neck ( published info for FM/CFS - yes ).
Be aware that spinal fluid is pumped back to the brain by a minute, sophisticated movement of the sacrum and the occiput. Inhale - occiput moves outward, sacrum moves inward. Exhale - occiput moves inward, sacrum moves outward. This work was done by Sutherland, Upledger, years ago - brilliant traditional osteopaths. So, I did a lot of craniosacral work to align the pelvis, neck, occiput. Helpful, but still unstable due to the old injury. Also, pelvic floor physical therapy with expert. Acupuncture - always helpful. Gentle pool work - no real swimming, but walking in water and gently movements. It took 1 year - 3 times a week.
As far as meds - nothing can replace ( for me ) the helpful pain meds which are now prohibited by pain management groups and virtually all doctors. These medications help with pain, but also dampen the hypersympathetic state that I and many others are in. I used them for 20 years and had no liver or kidney problems. Very safe. Wellbutrin ( brand ??) was helpful for energy and regulating bowel function and sleep cycle. I started very low dose in the morning. First week was a little crazy, but after that - great - for about 5 years until it stopped working. ( generic not so good ????)
I can only share what I did - and that this may not be the correct path for you. But maybe there are some things here that are helpful. Always - working closely with a supportive doctor - one who appreciates that this is a real physical illness, not some emotional or psychological disaster.
Ironically, I had one tick bite in Virginia in 2010 -with a strange little rash. My infectious disease doc did a screening lab, which was negative, but was done too early in the disease. Now - 5 positive bands - CDC positive for Lyme. Crazy.
Sending my hugs and thoughts. DO NOT GIVE UP. Healing possibilities are always there - sometimes in the shadows of our consciousness. Sometimes in the help of a professional who understands this.