Jules, thankyou for all that, I really appreciate it. I showed her yours and @Stoney’s answers and I think it’s already made a big difference.
I’ll mention the massage because she’s not sensitive to touch either.
She has finally started NSAIDS and they are making quite a difference (very averse to any medication that could be addictive, and for some reason she had it in her head that because NSAIDs were pain meds, they could be too). So we’ll start with sleep hygiene before moving to sleep meds.
We made the plan today to get the US and scans done, go back to the same Rheumy, but have an appointment with another for a second opinion if the first doesn’t make sense. Finally I’ll see if we can find the book. I think having a plan has helped her feel a lot better, and hopefully more info on fibromyalgia will help if it seems likely to be that.
Funny, I’m pretty sure I have a pain syndrome. It has crossed my mind that it might be fibromyalgia, but it doesn’t seem chronic enough. I’ve had it the last few days, but also many times previously, though only a very small proportion of the time. Roving pain around the joints and muscles, maybe with a nerve/tingly kind of feeling. Only happens when my inflammation is high and has set in - like the inflammation is setting off the pain circuits a bit randomly, not just in my joints. As soon as the inflammation goes down even a little, it disappears, and it’s often only present for a couple of hours a day. NSAIDs help a little, but not a lot, though they are out of reach these days. I mostly try to rest more and do more mindful exercise.
Anyhoo, that was a ramble! Thankyou again