Seeing others suffer is a terrible thing to have to go through! Wishing everyone support through their trying and heartbreaking times.
As for fybromyalsia, here is what has personally helped and hurt in regards to hotspots and fybromyalgia type pain (seems to be something of a spectrum, and can't say I ever have had full blown symptoms).
Definitely strongly related to hormones. Worst, full body pain was when I worked the night shift which really throws hormones out of whack. Getting on a birth control (Yaz), and being instructed to only take the inactive pills every four months helped me the most. Was a struggle to find what method of BC would help stabilize things rather than worsen them, and it differs or each person. I went to a sleep doctor and with their help, finally was able to manage my insomnia. That helped a lot with any hot spots, fatigue, and memory problems. Got adult cystic acne (also hormone related, and would absolutely throb when hotspots or body pain really flared up, and caused deep bought of depression which worsened pain further) under control finally with Face Reality products, Yaz, insomnia help, and the addition of fish oil and zinc pills. Working on getting social anxiety really worked through, but just improving in that area really helped lessen pain (stress and anxiety are both tied to and seem to worsen that kind of pain, and effect hormones). for whatever reason, humidity seemed to worsen both pain and the cystic acne, and moving to a dry climate helped tremendously. I rarely, rarely have even one hotspot now, and only fever brings out the rest of the pain. I haven't had a cyst in over a year and a half. I spent over 8 very involved years trying to find something to help with the pain and cysts, and it all came down to hormones for me.
Next, I'd like to work on the TMJ. It has gotten much worse, with continuous tendonitis in one side for over a year now (can hear the yummy squelching of the tendon in the sheath), with both sides more commonly locking. Unfortunately, it is getting even louder and is detatching more obviously, which bothers people around me. The pain has been constant for a while, but more noticable the last few months. My ear keeps "popping out of focus" on one side on a much more constant basis, meaning I can only hear my heartbeat and breathing. Makes it harder to communicate on the job. Not sure what to try really as the doctors have been useless. May try bee venom therapy, and some say they have had luck with a chiropractor. I am fairly certain something can be done though, and have been encouraged by the success with the insomnia, acne, and general pain.
. After that would be joint pain that started at an early age. Help on that one is coming. Current job requires tons of repetition and wear and tear. Simple solution is to work towards not making the same motion all day.
Are any of these things true for you guys? What has worked for you? What has made it worse? Hearing what worked for others is what eventually led to me improving so much. A lot of it made things worse, but it was worth it to find what worked. I hope you all similarly have had and will continue to have break throughs!!