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

I'm sorry to hear you are in so much pain, lilypaws. Hopefully the surgery will help lessen it significantly. I really can't remember just exactly when the onset of camptocormia was, but it has been several years. It's just nice to find people who know what I'm talking about and experiencing.

Hi @lioness,
Thanks for pointing out that most members on this site do not have PD, however, I mentioned the PD exercises to this new member with camptocormia because she indicated that she was first diagnosed with PD. Often PD and camptocormia go together. Here is an article from the NIH website that discusses PD and camptocormia,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6174367/

Thank you for posting the nih website. The information was helpful. I have PD and "something else". In 2018 recovering from extensive back surgery, I had a pulling down sensation, pulling my chest forward and then becoming short of breath. I assumed it was from the surgery and that PT would take care of it. Two years later and it is getting worse. My PD doctor has come up with 3 different diagnostic names: abdominal dystonia, camptocormia, and diaphragmatic myoclonus. Two weeks ago he injected Botox into rectus abdominus muscles. I have had no improvements nor side effects. I think the reason I don't have back pain is because I have such a hard time breathing that I sit down quickly before the back gets involved. I have felt a pulling sensation in my lower back but the breathing difficulty trumps the back tightness. If Botox doesn't help I assume I will be confined to a wheelchair in the near future.

I live in South Africa and was diagnosed with this disease 7 years ago. Nothing helps for me and we have no Mayo Clinic. I GIVE UP!!!!!!!!

Hi @valeriestrydom, oh, I hear your frustration. Can you tell me more about the severity of your bend and your mobility? Do you use a walker? Have you ever tried a brace?

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

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

Hi @robtrich49, I would like to add my welcome to Connect along with @amandajro and other members. Reading your post made me think of my own situation. I have gradually started walking bent over since my fifties when my wife commented while we were on vacation that I walked like an old man. I just chalked it off to my becoming an old man. I no longer take long walks and I drive the grocery cart when we are shopping because it helps me keep more upright.

@rjmcb mentions using a brace in his post earlier in this discussion here - https://connect.mayoclinic.org/comment/182484/. I haven't done much investigation and really didn't know the condition was called Camptocormia or bent spine syndrome (BSS) until a friend on Connect mentioned she thinks I might have Camptocormia. So far it's been low on my list of things to discuss with my doctor but reading your post brought it back to the top so thank you for that. Last Winter I purchased some Nordic walking poles which work better than a walker for helping you walk more upright. I haven't used them much but need to start using them and working on my posture while sitting at the computer. I want to do a little more research and talk with my doctor about a back brace to see if it will help straighten me up so that I walk more normal.