Everyone with Ehlers-Danlos has neck pain.

It sucks.

When I was in my 20s, I had head and neck pain so bad, it was completely incapacitating. I would beg to be guillotined. I don’t have words to describe that agony, pain so bad I couldn’t think, triggered by tasks like washing the dishes. It scares me to think about it now, remembering standing on our patio in the night air, crying and begging Mr. Pennington for a slice with a guillotine.

I was not diagnosed then. I had no idea what was wrong with me, and in too much pain to do much about it. I had been seeing doctors for my mysterious symptoms all my life and gotten nowhere, trauma I will save for another time. I am sure you know what I am talking about.

Now I look back at those years and wonder if I was having spinal cerebrospinal fluid leaks, which are often misdiagnosed as a chiari malformation. Sure seems like my symptoms then. Oh well. We will never know.

Mr. Pennington did not give in to my demands to chop off my head. I continued to live. Then one day I accidentally got diagnosed with Ehlers-Danlos and then another day I accidentally got better. What a surprise now, to be living a life of little pain, having energy to do whatever I want, which is what Less Flexible is about. Glad I didn’t give up.

My neck rarely bothers me now. I feel tears of joy creeping into me eyeballs over this. 😢

Get Your Deep Cervical Flexors Strong

The joint at the top of neck that connects the spine to the head is one of the most mobile in the human body. So are shoulders and hips, in case you were wondering. For those of us born extra bendy, that means will we will have extra instability there. Ouch.

Your deep cervical flexors have the potential to stabilize your neck and support your head. Might be a good idea to get them strong. According to this NIH study (Clinical Effects of Deep Cervical Flexor Muscle Activation in Patients with Chronic Neck Pain) weakness of the deep cerivcal flexors might be contirubing to your chronic neck pain and headaches.

I will discuss only one exercise in this post, because it is the best.

If my neck is angry and flared up, this one calms it down. It removes the pit bull who has his teeth dug into the base of my head. Does a dog attack you like that? (It’s not really a dog, just some protective spasming. Thanks, body.) There are other important exercises that quiet down my screaming neck, ones for shoulder function, which I will talk about another time.

My physical therapist who I love and adore taught me this exercise.

I can hold it for 40 seconds, not that I would brag.

It strengthens the deep cervical flexor muscles: RELIEF!

This exercise is so great, I love it as much as I love him. Especially because he laughs at my jokes.

I love and respect medical doctors but they will see problems through their education and specialty. That is how they are trained.

They may fail to understand how much we can benefit from strengthening. They aren’t having patients do that, so they don’t know.

Sometimes all they know are drugs and surgery.

Often, they don’t know how to advise you if nothing shows up on an x-ray or MRI, except to suggest drugs or surgery.

A medical doctor may not know what a physical therapist knows or what a physical therapist can do to help stabilize someone like us.

You’ve got to make the most of whatever stability you can get out of your flimsy body. Without Ascor I can get none because I was born so severely affected by Hypermoblity Ehlers-Danlos Syndrome. But with Ascor injected everyday, I am rockin’ strong.

Find yourself a good physical therapist, someone who gets results on you, results of less pain. It can take a lot of looking.

If you’re in Southern California, I recommend Evolution Physical Therapy. My triathlete friend who I run on the beach with and swim in the ocean with sent me there.

Their decor is garage-chic-fabulous. They have a zero-gravity treadmill, recovery boots, TRX and exercise classes taught by physical therapists, so no one yells at me if I refuse to do an exercise, which is why I quit my gym membership.

Plus Evolution plays really good music. I was just rockin’ out to Ghetto Superstar there this morning. Wasn’t that a great song.

Of course, you wouldn’t try this exercise without the guidance of your physical therapist, especially if you have a lot of neck trouble.

Of course, you wouldn’t take advice from the internet. 

Of course, you know better than do something just because someone on the internet said it helped them.

You’re not stupid.