hello
@Matilda and welcome to the forum. I hope this turns out to be a helpful place for you, as we all strive to keep it a safe and supportive space. Many people will give you their own experience, let you know what helps them and what does not, and in general try their best to be there for you.
I wish there was more of a solid fix and 'not a its all just how you manage it' diagnosis.
Yes, we all do. Unfortunately, there isn't a fix of any kind, solid or otherwise, for most of us. Truly, this is a syndrome that has no one thing or even set of things that will help everyone -- or that will
not help anyone either. The only thing you can do is experiment to find out what is the most helpful for you.
I recommend you read my advice post, which will give you some starting places for that experimentation. It's pinned at the top of the General forum section.
Another thing I recommend is that you be as active as possible in taking care of yourself. The vast majority of us have found that relying on doctors for help is not the best approach. About all that most doctors can do is prescribe pain medication. If you get a medication that helps you, that's great, but some of them are addictive and others cause side effects or stop being effective after a time. I am not trying to discourage you from trying medication, only offering a little word of caution. I, and others, have had some bad experiences with medications, so approaching them with caution is always a good idea.
Basically, keeping stress to a minimum, eating a very healthy diet (whatever that is for your body), keeping sugar and alcohol at a minimum, getting some form of daily exercise, maintaining a positive approach to things, and getting sufficient sleep and rest while pacing your activities are all things that seem to be helpful, if for no other reason than that they support better overall health which in turn will help you to manage the fibro symptoms. Other specific tips and tricks for managing certain things, like brain fog or specific pains, you can learn just by asking here in the forum. People here are eager to help others.
As for describing it......this is entirely up to you, and may also involve some trial-and-error. Mostly, however, we find that no one is really going to understand unless they, too, have or have had chronic pain and fatigue. One bit of advice I tend to give is not to expect others to
understand, because they won't. Instead, only ask them to believe what you say and not give you a hard time about it. How you describe your experience of fibro is up to you, but I have found that mostly people don't want to hear a lot about it. I have also found that it doesn't help me to talk about it with others except on this forum.....but your experience may very well be different and if it helps you to talk about it with someone, and you have a person who can listen helpfully, then by all means do that.
