@sundance6 Journaling your symptoms and issues helps in several ways. It allows you to see the patterns that develop, and understand what may work to ease discomfort. It also creates a visual reference for both you and your medical team to see what is happening over time [we cannot rely on our memory to tell us what was going on two weeks ago when you didn't feel well!]. Also, getting it down on paper helps clear your mind, at least it does for me. I keep it in line with my regular journaling, and often find there are correlations between what my symptoms are and what else may be going on in my life.

Here is a journaling discussion on Mayo Connect that you might find interesting: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Ginger

Late to the post but perhaps this can help someone. I have been battling a Chronic Fatigue Syndrome & Fibromyalgia diagnosis since 2017. This coupled with Autoimmune Diseases and reactivated EBV. An infectious disease doctor first diagnosed me with CFS/ME, as it is seen as a disease of exclusion. So between infectious disease doc and an integrative med doc I ruled out every other possible cause for my debilitating symptoms. I fought the diagnosis for years hoping autoimmune disease or reacting EBV was my issue. In my experience doctors who go to traditional medical schools do not understand nor believe in Chronic Fatigue Syndrome, they generally do not believe EBV reactivates and have little to no understanding of Fibromyalgia. Fibromyalgia has become a blanket diagnosis when they don’t know what you have and can offer no treatment. Like you I saw doc/Rheumatologist that thru out the Fibromyalgia diagnosis with no treatment plan other than exercise. Not listening to how sick I was. There are a few organizations/universities across the US that specialize in CFS/ME. You can not treat Fibro and CFS/ME the same as Post Exertional Malaise is huge part of CFS where with Fibromyalgia the docs always say excercise as part of treatment. They do not understand that exertion mental and physical will cause a CFS crash. Bateman Horne Center in Utah excellent resource for CFS/ME. Search the net and YouTube for doctors that understand the disease closest to you. I’m on east coast, NC and presently travel to Florida for treatment. Initially I went to Utah. Getting to a good specialist that has knowledge of disease will help you discover how bad you have it and they can offer some supplements/meds that treat your symptoms and support your mitochondrial health. They also will advise you on pacing and resting techniques to prevent crashes. If you have CFS the mitochondria in your cells can not create nor store energy correctly. So supplements that support mitochondrial heath are a good start. Good luck!!