As for reviews… I’m sorry as someone who reads reviews avidly I have found their all subjective and are fairly unreliable. As a Fibromyalgia sufferer it is impossible to stop oneself from being a throwaway person. You have to try and test yourself as no one is the same. We’re all suffering something like the same issues but not for the same reasons.
OK, that's now agreed, as sunkacola and Jemima have also said: we are all different, also as regards problems with certain items...
But isn't that also what the reviews say?! That's how I read them anyway. Or can you give an example of what you mean? And do you mean a "review" in the technical sense of a study measuring the reliability of studies - or differently, how? In my experience a review as opposed to a study is usually the most objective and reliable as far as medical evidence goes, often enough concluding that there is some evidence that some things help, but usually concluding that there is not enough evidence despite certain hunches about something.
We are too complicated for the world to understand and therefore likely never to be helped! I no longer personally listen to anything the world says or does. It matters nothing anymore as my world cannot be understood by anyone out there.
Yes, "we", meaning many medical conditions, are at the moment too complicated for medicine and maybe for the world. But what progress has been made by both regarding medical conditions and regarding FM in the last 20 years! We were non-existing, but now are generally being seen. All studies are still exasperatingly piecework, despite some (like Goebel's 'autoimmune' study in August) being presented in a disproportionately boastful way. But they are standing on each others shoulders, and after a decade of 600 studies a year (pubmed) on FM, they have gone up to 800 and probably more per year. They contain results that different kinds of mind matters, physio, diets, meds and supps can help us, but also that it's not easy, so we have to be proactive and self-advocate.
I hear you are no longer listening because others seem to have hurt you so often and similarly
we all do well to turn away from leeches, vampires and those who don't understand. You may not be in a position to be happy on your own or find people who are understanding (altho you say you have friends - do none of them really understand? Are they not friends?). But they do exist, here and elsewhere. Maybe you're here to listen, and certainly we're listening to you and hearing you, but wdn't want you to end up in self-fulfilling prophecies thru general distrust. I agree that no-one else can help us better than we can help ourselves, but we do need the suggestions of others for new ideas. That's why I love this forum, because it demonstrates and puts to life that we matter and find and share our thoughts and ideas. So a great place to be for listening and careful sharing.
I had the most understanding wife ever, yet my illness nearly destroyed her.
I very much understand the pain & grief - perhaps even feelings of guilt? - you're in over that and the resulting pessimism!
I think many of us can relate. My wife is also very understanding, sees my pain, but sometimes too understanding, too empathetic, catastrophyzing too much, when I'm in dog-mode ;-) (not realizing/thinking about my pain) she makes an issue of it, which doesn't make it better, and she suffers more than I do. But that's her problem, not mine, and I encourage her to let it go, like I do, and live that, which she sees, knows, tries to do. She suffers that I can hardly travel anymore, as she'd love to. But again that's her problem, I do my best to find a compromise which is advantageous for me while clearly self-caring. Like for instance testing overdoing something a little bit, like a 5-6mi walk today using my new supps, despite some cold & wind there. And a week's holiday one hour from home, 3 days of which I was 'ill' and cdnt do much. But no more seaside trips with me: If she needs to, then alone or with someone else. We are still finding compromises, and I'm confident that my supps will allow a bit more. These are things I talk with my psychologist about, and she confirms the way I go about it. And my wife talks with counsellors and friends about it herself. So I do think there are good ways of living with loved ones without it destroying them - but you do have to work at it. FM is a sudden death of parts of our old life and so new life which no one asked for, especially not in that speed and force. That needs a thorough grieving process, to empower a new orientation, new activity to make the most of it, and hope and not stay stuck in the grief about the old life. (My old life like many of ours was very active and I seemed to be defining myself by this activity, but thankfully I'd worked on not doing so all along, so I can embrace my new life of self-care very well, as unaccustomed as it seems to allow myself to do what I want and my body needs instead of serving others with all my energy, self-caring meaning having learnt to want what my body needs and keeping what my mind wants inside those limits, which is still a lot.)
