What does hypermobility look like at 39?

I can recall with vivid clarity that it was a fall morning and I was putting my arm out to stretch when I heard a pop. My neck was "out" for lack of a better term. The pain was unlike any I had ever experienced and I could not turn my neck to one side. At 14 years old, it was hard not to panic. I received help from an osteopath who was able to adjust whatever had moved out of it's normal position, but that was the start of a lifetime of neck pain and problems. Now, at 39, I am used to having an ongoing level of pain in the neck and shoulder blades. It wasn't until very recently that the pain increased in both duration and severity to the extent that I sought some answers.

First, there is the previous mentioned rib subluxation issue, which I have managed to get under control through physical therapy and changes in overall posture and use of my muscles. The pain at the base of my skull, top of my neck, however has been such a struggle. When that pain sets in, it moves into my head causing migraine type headaches. Again, this has been happening for so many years, I have learned to live with it and cope, but lately, the length of these headaches has been expanding to a week or two or even three out of a month! Starting with x-rays, the doctor said it is just mild degeneration and early stages of arthritis. She agreed that physical therapy could help.

I had to take a moment to let it sink in that the increased duration of pain I was experiencing was only a MILD arthritis and that I couldn't even imagine what late stage arthritis pain must be like. Scared, I went quickly to the PT and asked them to help me change my life. Hypermobility has always been the diagnosis I have been told from teenage years to now as to why I am experiencing the issues in my neck and back. I didn't know what EDS was when I was in my teens or twenties, so I just understood that I was hypermobile and that was that. Now, nearing 40, my body is stiffening, POTS symptoms are under control, and yet there is still hypermobility, and the PT let me know it was quite significant in the neck, likely adding to the issue.

They started me on some exercises that were basically chin tucks and head isometrics (though if you follow the links, don't jut your chin out so forward as the girl in the video). I was a little disappointed because I didn't see how I would be able to change my life one chin tuck at a time, but each session they have given me more challenging, but doable, exercises for my neck, shoulders, and to open up muscles that have tightened through the back and chest. For the first time I am honestly doing my exercises every day. I don't plan to ever stop because I have learned from Dr. Tinkle and the team at Lutheran that physical therapy and strengthening of the muscles with proper form is the key to helping hypermobile joints.

My mother is in her 60s and her arthritis is well beyond mild stages. She has chronic pain and tightness to the extent that she requires a neck brace quite often to do her daily activities. Her activities, however, are limited due to the extreme chronic pain she is in. It is my hope that in actively adding these exercises to my daily routine, I can avoid that level of suffering and maybe it is not too late for my mom to find some help in her own PT movements, too.

While my child has such an extreme case of Ehlers Danlos Syndrome as to disrupt her life every day with dislocations and subluxations, I have lived long enough to know what a pain it is to deal with the hypermobility even in its less extreme form. I hope to come back to this post in 6 months with a new found strength and be able to report that I have been free of those blinding headaches that start from the base of the skull and top of the neck and that I found a way to help mobilize those misbehaving joints and put them back into working order. I hope to tell you that 40 is the best year of my life for back and neck pain and I hope to credit that to the exercises and proper alignment techniques I'm learning along the way. Wish me luck!

Massage musings

Her hands moved along the length of my shoulder, popping and cracking their way through.
“What is making the grinding noise when you do that?” I asked her.
“The knots in your muscles. Yours are very hostile”. She responds.
Hostile. My muscles? My connective tissue itself? My genes? This Body? Hostile.
“Your worries and stress are all being held right in here”. She moves her hand lightly along the area where I can’t even remember relaxation. The tightness that holds my posture and strength and possibly even my resolve. That is where her hand circles.
My worries. I avert my eyes and think “Please don’t cry!” I’m always wound tight and crying is easy to come by on any given day these past 13 years, but I don’t want to cry here and feel the fool. My worries and stress…my mind jumps to an image of my daughter, in her immobilizer. Her shoulder unable to stay in it’s socket. Her body rejecting it’s basic design. Hostile. My genes passed on to her. My worries. My resolve not to break down and cry.
“How’s your daughter?” She asks. This young woman sees right through me. I’m sure my eyes tell my fear and sorrow in the moment before I can steady them with a cover.
“She’s in the immobilizer again. Back to the doctor tomorrow. She can’t seem to keep that shoulder in it’s socket. Hopefully they have something new to try”
“Oh. Poor girl.”
Yes, that. As the masseuse moves her hands across my shoulders, down my arms, back over the shoulders and down the spine, I feel new awakenings of pain with each area she touches. So many muscles holding tight to worries of their own. I didn’t even know they were hurting like that. Somehow I managed to overlook the individual pains and accept the overall pain in my neck and head that is almost always present. I assume this connective tissue disorder is to blame, but so what. My daughter has it so much worse.
I imagine how her body would respond to this massage. Her shoulders would certainly pop out, then suck back in, leaving that hollow space and hollow feeling for a moment, followed by a jolt of sharp pain. Her fingers, her knees, her jaw…No. No massages for her.
If I have overlooked pains and worries camping around my muscles throughout my body, they are insignificant to the non stop inflammation and pain my first born lives with. It’s unlikely she has ever lived without pain, so she probably doesn’t realize how bad it is, but she knows it is there. Fatigue grabs onto her during regular activities and it steals her away bit by bit. First with a turn of the foot, then a limp. A knee that spins inward, a hip that jostles and slags. Her joy fades as she trudges on and soon, hopefully, she can stop. Rest. Ice. Medicate. It hurts. It always hurts. And why? The genes. The connective tissue disorder that I passed on to her without realizing what I had done. Certainly some of those worries and stress are born of guilt and of sorrow.
“Finished” says the masseuse. She smiles and glides from the room, ready to see the next client. I get up, feel each newly awakened ache and swim in a heated pool of grief for my girl. I put on my shoes and go home.