My Story (Part 2): All the Ups and Downs

Click here to catch up on Part 1 of my story.

Over the past few years since my yoga and chiropractic injuries, my life has felt like a senseless and unpredictable game of Shoots and Ladders. Over days, weeks, and months, I slowly and precariously climb increasingly tall ladders, making painfully slow progress with my exercises, walks, and ability to complete daily tasks of living. And every single time, my progress is interrupted by an unexpected and instantaneous shoot that sucks me back into the abyss of uncontrollable pain and severe limitation.

Slow but steady progress gained over three, four, or six months lost in an instant at the hands of small and seemingly insignificant incidents.

Lately, I find myself tracking these past years of my life based on the progress and setbacks I have experienced since the original chiropractic injury. Severe setbacks have resulted from moving small boxes from one apartment to another, vacuuming, walking too far, exercising too much, exercising too little, tripping, bending and cleaning, something popping while I do my daily stretches, etc… and so on. Activities I can do one day may cause a major setback the next day, so I am continually second guessing my capabilities. One month I may be capable of being up and about for most of the day, and then with a wrong step off the curb, I am bedridden for weeks on end.

The official diagnosis finally given to me by my orthopedic doctor is sacroiliac joint dysfunction (SIJD). My sacroiliac (SI) ligaments – the ligaments that join the sacrum and the ilium of the pelvis – were literally stretched and sprained by the acute injury and subsequent chronic assailments my chiropractor inflicted on me as she pounded on my sacrum. For lack of a better personal understanding, these ligaments are now looser than normal (hypermobile), and unable to stabilize my pelvis. My pelvis is continually rotating out of place, pressing on nerves, and causing severe pain. And my chiropractor has informed me that once a ligament is stretched, it does not tighten back into its former state.

I am able to make progress through gentle core stabilizing exercises and a slow graded walking program in which I add on about a minute of time to my walk every two weeks. But progress is excruciatingly slow, and I live in constant fear of another setback in which all of my energy and progress over the past few months will be lost.

My physical therapist is unsure why I experience such sudden and severe setbacks from seemingly innocuous events after making significant progress. Does anyone else experience this?

Anyone else out there with sacroiliac joint dysfunction? What has been most helpful for you in making progress?

Stay tuned for Part 3 coming up soon!

10 Comments

  1. So far for me, doing the SI joint stretches on my bed has been the most helpful. I cannot get down on the floor so I must do them in the bed which is perfect because then I can do them first thing in the morning and first thing in the evening. It only takes about 10 min. I do a piriformis stretch with one leg crossed over one knee and gentle pressure down on the knee that is bent. I also do leg up in the air and gentle gas pedal up and down with my toes. Just really good stretches to keep my flexible. It has really helped me to not hurt so bad during the day.

    1. Yes I do those exact same stretches and have also found them helpful. So far I know how to make progress over long periods of time, it’s just keeping the progress that is not working out for me.

  2. Though I know for myself at least it has been both draining and healing to write my story, which may also be the case for you… I want you to know that I’m thankful you are sharing and I eagerly await part 3. Yes, ice found a good number of CRPS blogs out there (after all, we tend to be kind stuck at home), but not many with a Godward focus. Thank you. I’m encouraged every time I read. Even when I can totally relate to the Psalm 22 months.

    Gutsy Girl, CRPSABLAZE.WORDPRESS.COM

    1. Yes, I am in the middle of writing part 3, and I agree that it has been draining and there are pieces I do not feel ready to write about or share. Some of the memories are just extremely painful, and I have not even processed everything for myself. But, I’m realizing that even if I am not ready to share on my blog, just thinking through the pieces I am not ready to write has been a small step towards making sense of everything. Thanks for your thoughts.

      Also, I just sent you a message, so check your email 🙂

  3. Before my Spine Surgery in 2010, I was experiencing many of the things you have mentioned above in your Part 2. Having been a Yoga Instructor and Fitness Teacher before these issues began, and knowing that I had been in excellent shape, really contributed to the frustration of the matter overall.

    1. Yes, I totally understand what you mean. Before being injured I was extremely active with running and various intense and physical outdoor activities. It does make being forced to stop so much more difficult remembering what I used to be able to do.

  4. I just wanted to chime in and say that I don’t think it’s necessarily true that ligaments don’t tighten back up after an injury. As far as I’ve learned, both in my PT prerequisite classes and in my own experience as a patient, they can and do– it is just very slow going, because they don’t really get much blood flow.

    I believe the key is to allow them to remain within their normal range of motion– for example, wearing an ankle brace after you sprain your ankle to prevent from re-spraining the ligaments.

    The problem for people like you and me, I think, is that the ligaments in our pelvises are now so loose that our activities of daily living continue to re-stretch them. As you know, the SI joint is so much more complicated than a joint like the ankle– and so much harder to avoid re-injuring. But, anatomically speaking… it is possible for ligaments to tighten back up. They might never be good as new, but they don’t have to stay completely sprained, either. I wouldn’t listen to your chiropractor on this one.

    I have done a lot of research into the work of Vicki Sims, a PT who specializes in SI joint dysfunction. I even bought her book. I can’t say that I understood everything in it, or that all of her recommendations worked for me. But her key takeaway message, which gives me hope, is that the road to getting better depends on keeping the SI joint in alignment as much as possible, so that the ligaments can heal.

    Here are some links to her work, if you want to check them out:

    http://sidysfunction.com/
    https://www.youtube.com/watch?v=7vi7qnEzMQU

    1. Hey, just seeing your comment now. My spam filter caught it for some reason. Thanks so much for chiming in. I am definitely going to check out the links. Both my PT and my physiatrist told me that once the ligaments are stretched out they don’t go back to where they are…so I am interested to listen to the videos and hear this different perspective. It is definitely hopeful to hear you say this.

      I really resonate with what you say about the problem being that the ligaments are reinjured. On the several occasions I have had major relapses, that is always what I imagine happening – the ligaments are being re-sprained/stretched out again.

      It is interesting that my physiatrist who does my prolotherapy told me that stretched out ligaments do not go back to the way they were…but at the same time she talks about how the purpose of the prolotherapy is to promote healing of the small tears in the ligaments. So, in some ways that does sound a bit like a contradiction.

      I am definitely going to check out the links that you sent. Your blog has been a great resource for me.

      1. Hi again Esther! Sorry for my own delayed response. I think my last comment to you may have gotten flagged because I included multiple links, which I guess can make it look kind of spammy to a filter.

        I know exactly what you mean about how it can seem like there’s a contradiction in the way medical professionals talk about ligaments (as in the case of your physiatrist). I personally noticed that in class when my kinesiology professor (who is both a PT and an OT) was teaching us about them. She said, “Well, they don’t really tighten back up once they’re stretched out,” but her voice kind of wavered, as though there was some sort of a gray area she didn’t have time to delve into.

        I am going to post an update to my last post soon, about chiropractic visits being too stressful for my ligaments. For now, I’m really happy to say that I am doing so much better, and I think that for me, stopping the chiropractic adjustments to that area has allowed me to become much more stable. I hesitate to put this in writing lest I jinx myself, but in the past 2 months since I wrote that post, I haven’t had a chiropractor touch that area… and my SI joints have become much more stable. They aren’t locking up anymore, and my world is starting to open up again, and I’m doing a lot more. I find my body can withstand small insults a lot better now that its found more of an equilibrium.

        (Just to be clear, for anyone reading this– I wouldn’t have been able to stop going to a chiropractor if I hadn’t learned how to adjust my SI joints myself. I’m not trying to suggest that a stuck SI joint will magically pop back into place if you leave it alone. It’s just that the chiropractic adjustments were ultimately too stressful, and my own self-adjustments are much gentler. I will try to explain this in more detail on my blog).

        I think I’m also doing better because I’ve cut back on other things that stress that area as well. For example, for a while I was trying to get massages to the area, thinking that it might help to loosen up tight muscles. But honestly, even the slightest amount of touch to the pelvic area would destabilize my SI joints and every time, I’d walk out of the massage studio with them locked up. I ultimately started doing better once I limited my massages to the rest of my body, and only with very light pressure). Combined with a thorough stretching routine.

        Anyway, I hope you’re doing well and that my experience might turn out to somehow be helpful for you. 🙂

        1. I am so glad you have been able to do more recently, and I really hope you are on an upward trend!

          I can definitely relate to what you are saying about strenuous adjustments being not good, but some form of adjustment is needed to keeping everything in alignment. I find that I get the gentle adjustments from my physical therapist, and I am also able to do some of my own at home between sessions. I also found that when my physical therapist would loosen my muscles up too much (like the massages you were talking about), this would not be good for me. It is such a balance, of keeping the SI joints aligned and the muscles in balance, but not loosening things up too much, which seemed to put too much strain on the ligaments…if the that is making any sense at all!

          Looking forward to reading your upcoming post.

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