← Return to Camptocormia (bent spine syndrome or BSS): Looking for others

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@caprice123

I was diagnosed with camotocormina three years ago. If I try to walk without sticks, the rollator or use my mobility scooter, I have terriblellwer back pain. The more I bend over the more mobile I am, even though at a very slow pace and not being able to see where I am going. If I try to look up then I get severe neck pain. The only relief I have from this condition is for a very brief spell when I first get up in the morning or when I am sitting down. though the more I walk the more I suffer from pain and discomfort. I had two MRIs which showed my para spinal muscles have wasted away. Nobody knows why this has happened. I tried physio, but the physiotherapist discharged me as there was nothing they could do for me. Exercise or movement makes the condition worse. Camptocormia has disabled me as I need wheels to get me around. Even the rollator now is of little help. I’ve been told by the neurologist that there is no cure. I have no choice but to live with this disabilitating condition. I do sympathise with you.

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Replies to "I was diagnosed with camotocormina three years ago. If I try to walk without sticks, the..."

@caprice123. I am newly diagnosed but I've had "it" over a year. I thought it was caused from back surgery. I kept doing PT with no improvement. Now that I realize I can't improve with exercise I've pretty much given up hope. I haven't heard anyone talk about the flutter movements inside the rib cage. I think I may have a second dx: diaphragmatic myoclonus. I have an appointment to see neurologist next week. I hope he can sift through all the symptoms and tell me what I have and if a brace would help.When I stand up the muscles between my bra and my waist tighten pulling my upper back forward. That squashes my chest and I can't get my breath. One night I was in bed, awake. There were movements in my rib area as if there was a fetus moving around inside the rib cage. And there were wave-like movements. I wanted to call 911 for help but didn't think they would come because my symptoms sounded so bizarre. Then I began to doubt myself. Was this really happening or am I crazy and imagining it? More research described my symptoms as d. myoclonus. Of course it's possible to have 2 diagnoses.