Physical Therapy & Finding the Balance with Ankylosing Spondylitis

Several months ago I wrote a blog post outlining my current condition with my hips and walking. My post ended with a declaration that I would keep fighting to find the balance. I've been meaning to write a follow up to that post, to tell you what's happened since then and what I know now that I didn't know then.

In that post, I had a lot of questions. I wanted to walk outdoors for exercise and to help my joints. I discovered very quickly that didn't help, but caused a spike in pain, fever and limping. I had a lot of questions about the condition of my hip joints and at that time was dreaming frequently about limping, hip replacement surgery, and treatment options for Ankylosing Spondylitis, the form of inflammatory, autoimmune arthritis I have that attacks my spine and joints.

I wanted to know if my hip joints were damaged.
I wanted to know if I pushed through the flare ups caused by walking, if I was damaging my joints or helping them.
I wanted to know what might be in my future, as far as mobility. Would I need a cane or wheelchair, would I need hip replacement surgery?

Since that post, I have had a CT scan of my pelvis and hips, a physical therapy evaluation, and 3.5 months of weekly (sometimes twice weekly) physical therapy. I have some answers and insights now, and the dreams about hip replacements have stopped.

I learned from my scan results that my hip joints are still in good condition and that my SI (or sacroiliac) joints (the joints that connect your hip joints to your lumbar spine) are showing damage.

I learned from my physical therapy evaluation that my SI joints were extremely unstable. I was walking very sloppily, my joints too loose in their sockets.

I learned that my hypermobility (fancy word for joints that are way too flexible) on its own would eventually cause problems, but paired with Ankylosing Spondylitis will increase and speed up the damage to my joints.

I learned that with the level of inflammation in my body, any extra walking (especially if I am already in a flare, having hip pain or limping) is not advised and will damage my joints.

This was and continues to be, very helpful information for me. I began to work hard in PT to strengthen the muscles that surround and support my joints. I worked to improve my posture so that if my spine fuses into a locked position, I will be less likely to fuse stooped over. I did exercises at home. I faithfully went to my PT appointments in all kinds of weather, limping or not, with a fever or not, exhausted or well, to tell the truth, I'm almost always exhausted.

I strengthened my muscles. I improved the stability of my joints. I improved my posture (but I'm still working on that and likely will be for the rest of my life). I had evaluations of my shoulders, spine, chest bones.

I 'graduated' from physical therapy about a week ago. I adored my therapist and will miss her.

So how am I now? I still limp sometimes, but when I walk more than usual (say at a mall or Costco), I am less likely to be limping or limping as dramatically afterward. I still have hip pain, but I have less sleep disturbance due to hip pain. My hips, which had referred pain from my SI joints, and pain from inflammation in the actual hip joint, are causing me less worry. You can no longer find me Googling "Hip Replacement Surgery."

I still have pain in pretty much every joint in my body -- from my jaw to my toes. I still limp sometimes. I have spine pain every day. If I use too much energy, walk too much, or am on my feet for too long, I pay for it. I still run low-grade fevers fairly often, especially when I am in a flare, or have been pushing too hard.

I cannot walk for exercise, as much as I crave my old routine.

The ideal forms of exercise for me are low, to no, impact. That means mild exercise in the water, home physical therapy program designed specifically for me, etc. I cannot and/or should not walk much, run, jump, skip, hop, play most sports.

I can deal with most of that, but I gotta tell ya -- I MISS WALKING.

If you can walk, will you do me favor? Will you go for a walk sometime in the next week or two for me and take a picture of yourself? Will you post it in a blog post and link up in the comments of this post, or post it to the Live Art.fully Facebook page? Will you breathe deeply and look for things like birds, sunsets or sunrises, black tree silhouettes against sky, clouds, or natural bodies of water? Will you take a picture of any beauty you find? Will you enjoy your walk for me? I would love to hear about your walk through beauty.

So where do I go from here? I keep doing my home exercises, I keep working on my posture {STAND TALL!}, I breathe deeply to expand my chest and rib cage regularly to hopefully prevent that from fusing. I try and listen to my therapist and work on energy conservation and resting and asking for help and accepting help.

And maybe, when spring comes, I will swallow my pride and get a wheelchair and let my family take me on their walks. Someday my disease process may run its course and allow me to walk as much as I want again. I am hopeful for that. But for now, in order to take care of my body the way it is currently, I will try not to damage it further by causing it extra wear and tear.

I will live with hope. I will watch my daughters learn the graceful art of ballet. I will stand tall. I will breathe deeply and keep smiling, because life is beautiful and every moment is a gift. And yes, as always, I will keep fighting to find the balance.