My (Formerly Un) Stable Spine
There’s little discussion among the Ehlers-Danlos crowd about addressing instability with strengthening.
Perhaps doctors who treat us feel very sorry for how bad off we are? How much pain we are in, how weak and beat-up we seem. They are reluctant to insist too hard on physical therapy and exercise. We tend to be movement-phobic, as our disease is a pain disease. It is simpler for them to suggest drugs and surgery.
There are problems on the other end, too.
As an Ehlers-Danlos victim, I have to be very patient with and kind to physical therapists. My loosey-goosey body reacts differently, dramatically and sometimes badly to exercise, in a way a collagen-typical never would. The physical therapist doesn’t understand and gets upset. If I don’t take control of the relationship and calm them down, they become cowards and don’t want to have me do anything even remotely challenging.
These are the problems of having a disease that is poorly understood.
Learn to Love Exercise
We desperately need whole body exercise, as this is a whole body condition, even if just one part (cranial-cervical junction, shoulder, knee, whatever) is screaming the loudest. Unfortunately, physical therapists tend to focus on the one problem. We need the strength and stability everywhere.
Learn to love exercise. It is the key to getting out of this prison, in my experience, and if look at our hypermobile predicament logically.
I am hypermobile in every joint and my whole body is unstable. What else would address this, except getting collagen and muscles stronger? Yes, certain types of exercise strengthen connective tissue.
I know my body well. It takes time to adjust to anything new. So I make sure I get my way in physical therapy, that means that I get understood and we trust each other, so I get appropriate treatment.
Much of my EDS life is managing medical relationships.
My Unstable Spine
It was my severe spine pain that fueled my need for hard drugs like Vicodin and morphine, relief for which I am grateful even if surviving getting off was pretty much impossible.
I am naturally such a weak and stretchy person, with a willowy, thin, flimsy spine.
For many years I had such unbelievable pain at the top of my neck and also around my tailbone, where was the building I fell off to hurt so bad? Perhaps you know I am talking about.
Looking back at my life, I think I was having cerebrospinal fluid leaks in my 20s. That is the only description I ever read that sounded like my pain then. Talking in-depth to diagnosed and treated leakers, that was me, without getting treated. Those put me completely out of commission. Bed rest can resolve a CSF leak. But they were devastating. I got weaker and sicker.
I never sought the help of the spine surgeon. I just suffered. I didn’t know what was wrong with me and didn’t have the energy to find out. I had been sick my whole life. I had no idea how normal people felt. I was doctor-phobic and medication-phobic, as many of us are. We suffer misdiagnoses and humiliation, accusations of faking or malingering.
By the time I got diagnosed with Ehlers-Danlos Syndrome at age 33, I was too fatigued and weak for surgery. Getting through a hernia repair was almost too much for me.
So I continued to suffer, but perhaps that was a gift. When I became able to heal and recover after starting daily injections of Vitamin C, exercise began to work on me. I know because I had always been trying to get stronger. I had the chance to see how much my musculoskeletal system could improve with only intramuscular ascorbic acid plus exercise and posture correction. Turns out, A WHOLE LOT!!!!!!
Finding Stability
Finding stability once I became able to benefit from exercise was a very slow road because by then I had been disabled for years and on heavy pain medication, which definitely will not make you healthier. Please consider every medication you are on and the long-term plan for it because many medications make delicate people like us worse over time.
I pay enormous attention to how I am doing. Do try. This is so hard when you are sick with EDS and everything is overwhelming and confusing.
Once I stared my daily C shots, I was out of my mind with happiness that exercise was finally making a difference. I kept at it, learning more, trying more and going to physical therapy. And suffering through the pain of getting my weak body stronger. Be brave.
Please see my Shop page for my favorite books for exercise and posture.
These have worked for improving my body. No one in the EDS world is talking about these people.
I still go to physical therapy. I think I always will. A physical therapist may not get the whole Ehlers thing, but they know a lot. I want to take advantage of that.
There are lots of way to get a spine more stable but I am not sure they are very well known, which is tragic because back pain is the leading cause of disability.
The thing to do is keep learning and keep working at it.
Have you heard of Stuart McGill? Read The Gift of Injury if you want to be inspired by how much a human can heal.
I am a huge fan of Dr. McGill.
Dr. McGill said the strongest core he ever measured was Pavel Tsatsouline’s.
Who is Pavel Tsatsouline?
Pavel is the Russian who brought the kettlebell to America.
Hey, I want to have the strongest core, too!
Once I heard Dr. McGill say that, I looked into Pavel Tsatsouline. I got his book, Simple & Sinister. Hey, I want to be simple and sinister, too! F*ck yeah!
You can watch Pavel on YouTube. He’s very funny. I love funny.
Of course, I skip all the stretching.
I won’t even do a burpee because I refuse to force my spine to be more flexible. I want the opposite.
Pavel has a simple regimen.
I am following his recommendations, seeing how it goes. I wasn’t sure if this would be too much for me. Turns out my body likes this work.
When I take on something new, first I watch someone do it. Then I imagine how my body will respond.
Then I try it gently and gingerly with no weight and see how my body likes it. This does not go over well in exercise classes. Usually instructors stop the class and single me out when I refuse to do something.
I proceed cautiously and slowly from there. I have to judge if I am injuring myself and should stop, or if this discomfort is my delicate tissue adjusting to new forces. Should I continue?
One reason I study exercise so extensively is so I can understand what safe, healthy movements are and make sure that is what I do.
Form is most important.
My goal is perfection of form.
Now, I have a mad crush on Pavel because my core has gotten verrrrry strong. Life has become easier than ever. I am happier than ever. The kettlebell is a marvelous device.
Used properly, the kettlebell tones the fascia, pushes shoulders into place and stabilizes knees and hips. It is powerful for strengthening bones. Yay!!!
Here I am now, having mastered the Turkish Get Up. I do four on each side every time I exercise.
The Get Up is marvelous for balance and coordination.
It teaches the body to work as one unit. That is exactly what my all-over-the-place joints need.
Thrusting that kettlebell up in the air from the ground is psychologically empowering. You cannot feel bad after doing that. Even playing my memory of doing a Turkish Get Up makes me feel good.
It took time to work up to a full Turkish get up.
I am patient and persistent, in addition to simple and sinister.
I practiced the Get Up in parts with no weight until I got it down.
Yes, my body does hurt when I ask it to do new moves. It sure did with this, but it quickly adjusted. Thank you, daily shots of Ascor.
My Goal is Perfection of Form
Notice how I move my spine as one unit.
That is the key to a stable spine.
Notice how strong and straight my neck is.
Slumping is our enemy.
Slumping irritates tendons and ligaments. It squeezes vertebrae. It impinges on nerves.
Notice all the uprightness and lifting of the Turkish Get Up. Since taking it up, standing is so easy and walking feels like I am gliding on air. That is improved fascia health.
Forcing the torso off the floor with a punch up from the shoulder strengthens the stabilizing muscles in the front of the body and neck. Yay!!!!
I never do a crunch. They are dangerous and useless. They do not recruit deep supporting muscles. They reinforce slumping patterns, locking you into them. Your body will take its shape from the way you use it. Ever noticed how pelvis tucked and stooped over yoga and Pilates enthusiasts tend to look? Not attractive. Potentially damaging. I never do any back flexion or extension.
I make myself proud, even though I see a few spots where my form could be better. Do you?
I recommend using mirrors and getting footage of yourself exercising, so perfection of form can be your goal, too.
Yes, you can stabilize an EDS body through excellent choice of exercise.
And daily shots of Vitamin C.
It’s easier to do off all the brain-draining, fatigue-causing drugs. Have a chat with your favorite medical doctor about that.
Did you know that exercise is a way to tone up your nervous system too? I believe nervous system confusion is the source of much of our suffering. More on that another time.