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

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Sorry if these have already been answered:

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(#1.)
Does anyone know of anyone

whose camptocormia is

*solely*
caused by *dysautonomia*?

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(#2.)
Does anyone know of anyone
who has camptocormia

who is able to ***straighten up***

&

if the person is able to straighten up,

does the person start ***hyperventilating***
?

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Thank you very much!
Wishing everyone tons of blessings!

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I was recently diagnosed.. with Camptocormia,, I tried a $1000 brace but it did not help, as my problem is with weakness in the muscles in the low back that hold me up (proper name escapes me) anyway the brace seems to be for bending in the mid back,, L1 and above. All I have researched seems that P.T. might help, and Deep Brain Stimulation MIGHT help with severe cases..

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.

Please see my comments above re hyperventilating. Could be caused by just working extra hard to stand up. I get that quite a lot.

I have not found any recent studies or reports regarding Deep Brain Stimulation. Can you point me in the right direction? Thanks, Robert

I am dealing with Camptocormia as a complexity of my Parkinson's. I feel my daily exercise and PT-instruction is giving me the confidence that I can at least slow this down. Would like to share exercise routines with others. Support group?

Hi @billryan1123, Welcome to Connect. I haven't been formally diagnosed with Camptocormia but I do have difficulty with posture and keeping my head up when walking. I'm 80 and have struggled with this a long time but I for one would love for you to share your exercise routines as I'm sure others in this discussion would also like to see.

This discussion on Camptocormia is in the Spine Health Support Group but we also have a Parkinson's Disease Support Group - https://connect.mayoclinic.org/group/parkinsons-disease/. Discussions can be added to multiple support groups to help members find them easier. Do you want to start a new discussion to share your exercise routines that you have found helpful?

Thank you for the welcome
My PT had provided me with roughly 20 stretches that have technical names. I do them daily and will list them all below, BUT PLEASE SEE A PROFESSIONAL FIRST BEFORE DOING THESE EXERCISES. I also walk with my upright walker and or pedal my Theracycle daily. I continue to do some light yardwork, but my posture fails when I try too much. One surprise is I can pedal my bicycle just fine. I am also doing some weight lifting to maintain strength. The most effective thing however is sleep. This is getting harder to achieve, but it does give me the capacity to stand up straight for longer.
PT Exercises assigned to me (please see your provider first):

Sit to Stand with Arms Crossed

Standing Row with Anchored Resistance
Standing Tricep Extensions with Resistance

Squat on Foam

Heel Raises w/Counter Support

Standing Single Arm Bicep Curl

Supine Bridge

Supine Bridge with Lateral Scooting

Supine Upper Extremity Roll

Bird Dog

Standard Plank

Push Up

Thoracic Y on Foam Roll

Cat Cow

Lower Trunk Rotations

Supine Figure 4 Piriformis Stretch

Corner Pec Major Stretch

TL Sidebending Stretch - Single Arm Overhead
Standing Hamstring Stretch on Chair

Supine Hamstring Stretch with Strap

Seated Thoracic Extension AROM

Tandem Walking Along Line

Backward Tandem Walking

Staggered Stance Weight Shift with Arms Reaching
Runner's March

Sideways Walking

Walking

Calf Stretch

Calf Stretch (edge of stair)

Thanks for sharing your list of exercises @billryan1123! I do recognize a few of them from one of my recent PT sessions for improving my balance. I also use a Teeter FreeStep Recumbent Cross Trainer for about 30 minutes a day which helps me along with an upright row and ride machine that allows me to do squats a little easier. I normally do the tandem walking forward and backward every morning while waiting for my coffee to brew 🙂