>>311418I have hypermobile EDS. your doctor is right in that getting a diagnosis won't do much, it's really only to rule things out for yourself. otherwise physiotherapy is the best thing. it makes a big difference but takes at least a few months and a lot of effort to get stronger in the right way and re-learn movements etc. to feel the benefits.
Have you done the beighton test before? You can do it on yourself. There is also a checklist of other symptoms and if you check a certain amount, then it's fairly likely you have it but there is no definitive test to check for the hypermobile type currently, only the more serious kinds.
My pain comes and goes, it's usually a constant background pain with intermittent bouts of extreme pain but the thing I suffer most with is fatigue from hypermobility. And it's not even the kind of fatigue that comes with depression, it's the kind that worsens on exertion. Plus the cognitive issues and brain fog. It just makes it really hard to function.
Also I really hear you on the lack of visual symptoms making your illness invisible to others. It makes you have to be extra resilient when you really don't have the strength or energy to do so.