This “lower back fatigue”, as I referred to it was the best description I could come up with, came on rather suddenly while out on a daily walk of about 3 miles. We were a group of employees who walked during lunch. Nearing the end of the walk I suddenly felt the need to sit on a big rock to “recover”. I was 62 at the time. This was the beginning of a 15 year journey that wound through numerous medical specialists and tests: epidurals, facet blocks, neurostimulator implant(4 years, then removed), laminectomy, chiropractors, acupuncturist, neurosurgeon, neurologists, Mayo Clinic-Jacksonville, FL, X-ray, MRI, CScans, numerous blood tests. The one common opinion shared by just about all was: “You have signs of arthritis in your back but not more than someone your age should have”. I was at the point where I felt like I had tried every avenue and just accepted it. My 4 year older sister had been walking bent over for at least 4 years before me. She never seriously investigated the symptoms and refused to go in public with a walker, choosing to move from handhold to handhold. Now when she is in the kitchen the breakfast bar prevents seeking her. Point is: don’t let pride interfere in your lifestyle. I was finally referred to a neurologist in Savannah, GA Dr. Victor Rosenfeld (912)691-4100, 1326 Eisenhower Drive, Savannah, Georgia 31406, and on August 3, 2017 I had an appointment, meeting first with the nurse who performed a few neurological tests and asked for my symptoms. I have found the best analogy is to say that it is like carrying a food tray with arms fully extended and a light weight and walking. After a number of yards you feel fatigue (not real pain) in your lower back causing you to feel the need to sit down and rest before continuing. After her exam, Dr. Rosenfeld came in and also asked for my symptoms. Again I described it as before. He said that I had Camptocormia. This took all of 1 1/2 minutes, and 15 previous years of failures. He printed out a computer search for Camptocormia and it fully describes my conditions. He said that I would find that 99% of doctors, nurses and clinics would have never heard of it. So true. I have been checked for Parkinson’s and I don’t have that, thank God, nor does my sister. There are some indications that it can be inherited in some (I think my father showed some symptoms, much less than my sister and me). Please explore the back brace with Hangar. I have a great walker called The Drive, available through Walmart and Amazon and they make a model that has raised handles that are designed for walking with your forearms resting in arm brackets. Look it up on Google. Keep on looking, there’s too much life left, and things for us to do.
Bob

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Thank you for sharing your story. I'll be seeing my movement disorder doc on Tuesday. I don't have back issues. The muscle spasms occur in the front. I wonder if there are subgroups of Camptocormia? Or maybe it's like PD – every pt experiences it differently.

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One thing I would like to point out to those searching for a diagnosis for their bent over posture. When viewing the MRI/X-RAY from a back view, while facing forward, the rear view of the vertebrae should show two black dots at the point where the vertebrae merges with and forms the spine. The black dots are muscles, two per vertebrae. With Camptocormia these small muscles atrophy and are individually replaced with white dots, which is fat/adipose tissue. The cause of this unknown, even among those who study and are familiar with Camptocormia. No known pharmacological response. Best assistance is through walks, throughout the day, which prevents atrophy of other major muscle groups, and gets us out, thus my search for the best walker, and brace, when needed.

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This “lower back fatigue”, as I referred to it was the best description I could come up with, came on rather suddenly while out on a daily walk of about 3 miles. We were a group of employees who walked during lunch. Nearing the end of the walk I suddenly felt the need to sit on a big rock to “recover”. I was 62 at the time. This was the beginning of a 15 year journey that wound through numerous medical specialists and tests: epidurals, facet blocks, neurostimulator implant(4 years, then removed), laminectomy, chiropractors, acupuncturist, neurosurgeon, neurologists, Mayo Clinic-Jacksonville, FL, X-ray, MRI, CScans, numerous blood tests. The one common opinion shared by just about all was: “You have signs of arthritis in your back but not more than someone your age should have”. I was at the point where I felt like I had tried every avenue and just accepted it. My 4 year older sister had been walking bent over for at least 4 years before me. She never seriously investigated the symptoms and refused to go in public with a walker, choosing to move from handhold to handhold. Now when she is in the kitchen the breakfast bar prevents seeking her. Point is: don’t let pride interfere in your lifestyle. I was finally referred to a neurologist in Savannah, GA Dr. Victor Rosenfeld (912)691-4100, 1326 Eisenhower Drive, Savannah, Georgia 31406, and on August 3, 2017 I had an appointment, meeting first with the nurse who performed a few neurological tests and asked for my symptoms. I have found the best analogy is to say that it is like carrying a food tray with arms fully extended and a light weight and walking. After a number of yards you feel fatigue (not real pain) in your lower back causing you to feel the need to sit down and rest before continuing. After her exam, Dr. Rosenfeld came in and also asked for my symptoms. Again I described it as before. He said that I had Camptocormia. This took all of 1 1/2 minutes, and 15 previous years of failures. He printed out a computer search for Camptocormia and it fully describes my conditions. He said that I would find that 99% of doctors, nurses and clinics would have never heard of it. So true. I have been checked for Parkinson’s and I don’t have that, thank God, nor does my sister. There are some indications that it can be inherited in some (I think my father showed some symptoms, much less than my sister and me). Please explore the back brace with Hangar. I have a great walker called The Drive, available through Walmart and Amazon and they make a model that has raised handles that are designed for walking with your forearms resting in arm brackets. Look it up on Google. Keep on looking, there’s too much life left, and things for us to do.
Bob

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I believe I have this condition. It is apparently very rare. Please check out an article on biomed central which indicates Riboflavin as a treatment. ( I would post a link but am not allowed. Just Google bent spine syndrome and riboflavin). I am trying to find a doctor who is open to investigating this with me.

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I believe I have this condition. It is apparently very rare. Please check out an article on biomed central which indicates Riboflavin as a treatment. ( I would post a link but am not allowed. Just Google bent spine syndrome and riboflavin). I am trying to find a doctor who is open to investigating this with me.

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I'm trying to find the camptocormia group. Need help.

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Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

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John,

Thank you for taking the time to welcome me and share your experiences. Exercise does not change my symptoms so much but it surely strengthens what muscles I have. It is my understanding that exercise is essential for slowing PD down. I have never been one to exercise much, so this is a constant struggle for me, even though I know it helps. My feet have some issues that tend to discourage as well. As a result of surgery a long time ago on an extremely painful arthritic toe, I have a hammer toe on that foot. On my "good" foot, I had the tendons cut on four of my toes so that they lay flat and allow me to walk without too much pain.

Early on I started using the Nordic walking sticks. I really like them. Now I use just one of them on my "good" side for walking without my walker. Parkinson's has stolen the "swing" needed for balanced walking so I kind of gave up using the pole on that side. Every once in a while I get it out to practice. As with all other exercise, I need to do it more often. We have a stationary bike that I use sometimes.

I will check out the sand dune stepper and the exercise site you mentioned. Variety helps!! As always, I am in awe of folks like you that suffer from more than I have ever known, yet still stay positive and press on.

Thanks again for your help.

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Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

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