Good morning, I have read these posts with interest, because I have camptocormia also.
I first started showing symptoms about 11 years ago. Gradually worsening, year by year, and never with any diagnosis. I also hade some acute back problems (bulging discs, arthritis, etc) that was sort of a distraction to the doctors. They focussed on that acute pain, but I never received a good answer about why I walked bent-over, and had trouble being erect. I came to Mayo/Rochester in March, and they knew right away what it was. My particular camptocormia is caused by axial myopathy. My erector spinae muscles "have left the building". I wish I could tell you why, but even back in 2013 it was evident that they were being compromised by something.
I've attached a photo from 2013. At that time, I really needed to bend over to walk only when I was walking uphill. Now I am bent over to walk all the time.
So here we are. No cure. No effective treatment. Not a great situation.
I am still able to be quite active, and ride my bicycle and my motorcycle quite a lot. I also have Type II Dia, but that is well controlled.
I take two Aleves at night before bed, and that helps me sleep. Last week I had a hydrocodone because of the pain, and that is the last time I will do THAT.
I use a walker. Using a walker is GREAT, because it allows me to take a full, natural stride when I walk. It is weird to see the walker in the garage parked next to my bicycle and motorcycle. But this is a weird condition.
One thing I would like to know, that no doc has talked about, is this: what is the end game for this disorder? Is my axial myopathy going to get worse? And if so, in what way?
I'm glad to find a forum with folks who have what I have. This is not the future we had planned.
Stay well and happy.
Bob