No, of course you’re right, tom.girl, there’ll not be any easy help for a decade or two. Amitriptyline was similarly as bad for me as for you, but I then stopped it sooner, after 4 months. All other meds I had to stop even quicker. Also if they did help, they’d suppress symptoms, not heal, and they dull my brain so stop me from self-care, pacing, analyzing symptoms and triggers, like on my blog: I prefer pain with brain to no pain with no brain.
I manage tho to bring all my local pains down to zero and my restorative sleep up to 7-8h. It’s hard work getting there, and still work keeping it that way. But that and looking to keep happiness up to almost 100% - more than before all these conditions I have actually - it makes for a high quality of life. Despite at the moment only being able to move or talk for 5 to 30’ without pain increasing from 2 to 5-6, and a new set of symptoms coming up with each of the 3 jabs and then after the last every month.
It’s the mental attitude of radical acceptance using techniques of acceptance and commitment therapy / mindfulness / serenity prayer etc. which has allowed me to keep happiness & quality of life up this high.
Age? Yeah, I spose everything has its up- and its downsides. I find it harmful to compare with others or even with my former life, unless to find patterns of symptoms and triggers. I’ve had pain & stress all my life, GI, back and more, still was able to get fit in all regards by the time I was 50 than ever before, fibro crept up inside of 8 years and able to live with it, but not able to tone anything down, it, i.e. not caring better for myself smashed me down not able to do anything much for 10 months except full time trying to find out the many things I now know about myself. Then just about able to commute & work a little, each jab and covid and many other triggers smashed me down again and again, energy down to 10% every time. So knowing about the fibro coming up, the MCAS I probably always had etc. earlier and connecting with others that I need to self-care and pace much more might have helped. But again - might might might - I was self-caring as well as I could, I did everything right, and now I simply have to adapt once again and like you say tom.girl make the best of it, savouring any which way I can.
What others say? I think most things people say very understandable, and it helps me to realize that. No one understands this invisible sickness yet, we don’t, docs don’t, researchers don’t. So of course “But you’re so young!” and of course “you look fine”: this is part of the truth, and it’s up to us whether we let it get us down. With my general attitude I manage to say: Yeah, luckily I’m not as old as my stiff movements suggest, and I look fine. It’s bad enough as it is, I don’t want to be old or look bad with this. I’m glad I’m young and nimble enough in my head and partly body to get a fairly good handle on this, turning crap into gold as much as possible, and I’m glad that neither I nor people can’t see everything. “Bad”/good enough that my wife can see everything in my face and help me pace. At the moment I’m so bad that even I myself can see how blue-white my lips are. That helps pace, but doesn’t make it any better. In conversations what helps is a quick answer like “at least that” / “well, if nothing else”, or just “yeah” - and not getting annoyed, not for a minute.
Cos it’s the positive or negative mental attitude that makes all the difference to this and that’s a choice. If I could improve anything with a negative mental attitude, I’d go for it… 
But as it is, it doubles the trouble. Mind over matter.