23: Learning to Move Again

Photo by Bradley Dunn on Unsplash

As the pain began receding, I immediately sought some new careful movements to add to my roster of stretches. A very important detail that differentiates my AS case from some others: it did begin with an injury.

No, my right psoas was not yanked out by the roots or overextended to the point of scarring. And ‘injury proneness’ is not a symptom I’ve seen listed on Ankylosing Spondylitis info sites. But, autoimmune arthritis patients…let this be a lesson. Your body does not respond to injury, nor recover from it the way a person with a normal immune response would! And injury plus arthritis equals…nightmare.

However, AS responds so well to exercise and stretching that I was told mine would be unlikely to progress due to my love of physical activity. This made sense in light of the fact that stretches noticeably reduced my pain levels after completing them most days. But I was not about to forget the painful trial and error that had been involved in finding a set of stretches I could do pretty consistently, without making myself worse.

The bottom line is this: autoimmunity can create destructively persistent inflammation at the site of an otherwise miner injury, causing it to become chronic. Also, due to the strain of inflammation that your core muscles and ligaments are perpetually under, injury is not at all an unlikelihood! This is an incredibly hard pill for an athlete or a dancer to swallow, not to mention those patients juggling demanding jobs and households full of children.

My utmost advice is to focus on keeping your core muscles as toned as possible, while avoiding all forms of jarring, jerky, or ballistic exercise. For years I had had to monitor my every movement with seemingly absurd paranoia, but I’d learned repeatedly that there was no way for me to be cautious enough. If I engaged too many muscles getting up from the couch, or got a little excited and walked with too-large strides, I would be in extra big trouble for days or weeks afterwards. I had to be particularly careful under the influence of alcohol or weed, and backed further and further away from those things over time…as I could no longer enjoy them without mortal fear. Due to their pain-numbing effects, I might forget to use my hands to cross one knee over the other or to lift a leg onto the bed or couch. Those little oversights were deadly the first three years.

So here I was, freshly diagnosed, no psoas damage or scar tissue on MRI’s, no longer any pain at the site of original injury, and ready to take the bull by the horns and add a broader range of movement to my life again! This sounds very exciting but I began in super…slow…motion.

First of all, I found a gentle stretching program that specifically addresses Piriformis Syndrome — pain in the piriformis and surrounding tissues that can be caused by any of a number of reasons. I also found a series of stretches and muscle toners that involve barely any movement or reps, but instead strengthen the psoas and adductors through holding static positions. They began with instructions to do a couple reclined breathing poses, along with self psoas massage, for several weeks before graduating to the muscular poses.

Day by day I followed the program, telling myself to be patient, that one day soon I would be walking with a full gate, feeling movement in my hips…taking on small hills and maybe a little careful dancing. But when it came time to actually start the exercises, my body felt fully unfamiliar to me…like that of a tight, sore, fragile, rickety lady who had no flexibility at all. My movements had been guarded for so long that now my body was awkward in its attempts to move outside of those parameters. My AS had set in at the age of 38 and now I was in my 40’s. I thought…surely this isn’t just the new me??

This is the ongoing story of my experience with a crippling autoimmune disease, Ankylosing Spondylitis, that I’m putting in remission with diet and stem cells!