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.


  1. So sorry for the pain you are going through. I would miss walking too! Thanks for sharing your "walk" here with us so publicly. You are in my prayers daily.

  2. A fellow RM writer referred me to this blog post! I, too, have AS and it has changed my life dramatically. I try to do enough walking to keep myself from locking up hipwise, but use a wheelchair for all of my outings (mostly to doctors.) I have several other auto-immune issues, but right now AS is at the top of the list. My outlets now are writing, and other creative endeavors and I so miss the outside world! Blessings on you as you live with this challenge - and yes ... stand tall - in the world and in Christ! Blessings.

  3. I hardly EVER get to walk, but last week when the weather took an unexpected turn and we had 50° instead of the -12° we had today - I decided to take off. The first time in years. I took my phone with me, had no idea how far I would get, and started down the driveway. It was one of the holiest moments of my life. I am SO happy to share it with you as I'm not so sure when it will ever happen again. Bless you, my dear. And know you are not alone...


  4. Thank you for writing about your PT process and your current status, and explaining it all so clearly. I'm glad that there were some benefits from PT and that some of your questions were answered. I'm especially glad that your hip joints are not damaged so far! I'm very sorry that you're not able to walk, and that there's so much that is not fixable. It makes me feel all teary for you. I hope that the home program will continue to help your life. I know the day will eventually come when you will be able to walk again, but I hope it is sooner rather than later. Love you!

  5. Thanks so much for sharing about how you are doing physically. I had been wondering what your health/pain/life was like.

    If I read correctly, you were only diagnosed about two years ago. Is that right? Does that mean that the disease has progressed fairly quickly for you? I don't know what a "normal" progression is like.

    I'm sorry that you have to suffer so much, but I am delighted and blessed to see all that God is doing in and through you. Your art and beauty in the midst of pain and illness is a testimony to His grace and goodness.

  6. Oh my dear friend. I found myself crying two different cries throughout this post. One of sadness, wishing things were different, wishing you could be the one taking pictures of beauty as you walk with your lovely family. The other was because of your graciousness and spirit. They are amazing. I am so honored to know you.

  7. One of the best things I bought since living with chronic illness was a mobility scooter. It allowed me to go "walking" with my hubby and dogs when I would have otherwise been unable to do so. Plus I didn't need someone to push me; I could manage on my own. I bought mine at a home health store, but I have also seen them on Craigslist.

  8. Hi Rachel, I was diagnosed not even two years ago. I don't know that there is a "normal" progression as each AS fighter has a different experience and disease processes can vary greatly. Some with AS experience only mild back pain and some experience extreme pain and disability, fusion and or joint destruction. I don't know yet where this journey will take me. I do know that it effects my daily life a great deal already.

    Thank you so much for your comment and your words. They are a blessing.

  9. Hello. I just saw your blog. I am a fellow AS sufferer. I have found great relief from pain by avoiding ALL starches. My flare-ups calm down within a couple days. If they don't, a Water fast will break the Inflammation cycle.

    The other EXCELLENT healthy thing that I do daily, as soon as I get out of beds, is a stretching excercise video called T-Tapp, named by creator Teresa Tapp. Omw! ALL AS people need this stretching DVD. Before T-Tapp, I couldn't stand straight as my back muscles were too tight. After a week of her 15 minute DVD, I noticed my posture was better (and I wasn't "forcing" myself to stand straight)! As long as I do a minimum 15 min stretch, I'm good to go. On flare-up days, I do it twice a day. It is an option for those who can't afford physical therapy!

    I hope you find reduction in your pain, thru PT and diet choices. A good site is www.kickAS.com for info and dirt changes!

    God bless!

  10. I'm inspired by your eagerness and enthusiasm to overcome that pain in your body by taking care of your health. I think it’s great that you don’t need to undergo any knee replacement surgery or stay on a wheelchair because you went through physical therapy sessions. Continue with what you’ve started and push through with your exercises. I’m sure your condition will improve as time goes by.

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  17. I admire you for staying positive in spite of what you’re going through. Because of this post, I feel enlightened, and I think I can be more appreciative of small things like a walk in the park. Just think of your exercises like going for a walk, so you won’t miss it much. I hope that you’re feeling much better after a year of posting this. Live on with that fighting spirit, Jennifer!

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  29. I have recently been diagnosed with AS after 7 months of iliac inflammation. Its still sinking in and I am trying to know more about it. I haven't yet come across such a clear and honest blog. I hope and pray that the medications suppress your immunity and that youare able to do most wonderful things in life pain free or can manage it. If there's one thing AS has taught me over these 7-8 months is that every single one of us should be thankful for all the good and bad times we have had and be full of hope to go that extra mile to do anything in life. Everyone has there own battle and this is ours so let's not shy away from the challenge and make the most of everything. I wish everyone is most certainly pain free quickly. Please keep sharing your thoughts and experiences so all of us can learn from each other and tackle AS to the ground. Wishing everyone a long and healthy life.

  30. Hi, nice blog. I went through this. My situation is very close to yours: I have AS. A severe form. I'm taking Enbrel medication every week. I use art journaling to go through the bad and good times. I walk with a cane when I can't have my medication which is often.


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