Hello Everyone. First time poster here. I am glad to find you, as it is a lonely world out there when you have been diagnosed with camptocormoa.
I received that diagnosis in April 2021 at Mayo Clinic/Rochester. I had been to a load of physicians here in Spokane, none of whom could figure out what was going on with my back. Finally a back surgeon put me in touch with Mayo, and they had it figured out in just a couple of days. I have Axial Myopathy as the root cause of my camptocormia.
So finally, I had a diagnosis. But close on the heels of that diagnosis was a conversation regarding cures (there are none), and treatments (not very many, and none very effective). They suggested that I go pick out a nice walker.
So standing upright has been a problem, and is now nearly impossible. And that means two things: first, other muscles are being "recruited" to carry the load when I try to be upright, and those muscles get fatigued quickly. And it is HARD WORK to hold oneself upright with muscles that were not meant to perform that function. So if you pant a bit, and it seems to be very hard, well it IS very hard, and your body (heart, lungs) are working extra hard to make it happen. And with back muscles no good, lifting anything above my waist is also really had. And second, walking is very hard. I used to do fine with a shopping cart. In fact, it allowed me to take a normal stride, and oh boy did that feel good. But as my disease progressed, shopping carts are not quite up to the task. I have looked at braces, but they seem cumbersome and uncomfortable, so I have given them a pass until now.
On top of the campto, I seem to have some arthritis in my lower back that causes pain when I extend back - lying on my back can be pretty uncomfortable. I get relief by sitting in my recliner, with my knees drawn up. I sleep that way from time to time.
As for pain relief, I have a prescription of Tramdol, but it is not helpful. Probably the problem is that I don't take enough of it, but I am concerned about getting hooked on opiods. Right now, the pain is somewhat manageble with Tylenol and aspirin. We also use a topical foam called Theraworkx that gives a bit of pain relief and acts very quickly. It contains a magnesium sulfate, which is what epsom salts is, and you know about that.
At this point, I can ride a bike and row, but can't walk worth a flip. I have also noticed that my inner leg muscles appear to be atrophying, which may be connected to the disease, or to my being too sedentary.
I hope my comments are of some value. And I would really like to hear more from you about what works in terms of increasing flexibility, strength, and mobility.