What’s going on with me right now

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It’s been a few years now since I first began to understand my pain problem– three, to be specific.

Since then, I feel like I’ve made a lot of progress in terms of how I view pain and my nervous system, and how much trust I have in my body.  Finally, I was able to break the cycle I’d been caught in for years, where where I’d go from doctor to doctor, begging them to explain why I was in so much pain.

Unfortunately, at the same time that I’ve gone through these mental and emotional transformations, I’ve also had some very real physical issues to deal with.

I mentioned at the end of “How a physical therapist helped me through my lowest point, Part 8” that I was developing chondromalacia patella in my right knee, and that it was made worse by the fact that my physical therapist told me the pain wasn’t significant and that I could try to ignore it.

I was 26 when this happened… I’m 29 now.

What happened in the intervening years is so incredibly frustrating to look back upon. I thought my problems were ending when I finally solved my pain problem, but thanks to the chondromalacia patella, things were actually going to get a lot worse before they got better.

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The only way to look back on the past three years without feeling completely powerless is to focus on what I could have done differently, knowing what I know now. Now I know:

If only I’d started physical therapy for the chondromalcia patella sooner, it never would have gotten as bad…

If only I’d known that the cortisone injection wouldn’t be worth it; that all the extra fluid in my leg would put me on crutches for a week…

If only I’d known how quickly I would become weak from inactivity, I would have refused to hold still…

If only I’d known that working out in a pool would be the only option for me, I would have joined a pool right away and not wasted any time trying to work out on land…

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Basically, I started physical therapy for my knees too late. I went to physical therapy and did everything my new PT told me, but all of her exercises weren’t enough to counteract the downward spiral I’d ended up on.

As I would learn, there are two ways to weaken a muscle. One is to not use it at all. The other is to completely overuse it so that it doesn’t have a chance to rest.

I was, unfortunately, doing both of those things. It was excruciatingly painful to put any weight onto my right knee, so I moved very, very little—causing all those muscles I wasn’t using to weaken.

Then, when I did move, I was completely overusing the muscles I could use—aka putting all of my weight onto my left leg and completely overworking the muscles of my left hip.

I was doing everything my physical therapist told me, but I just ended up with even more pain in the front of my left hip, and then my right hip, and then the chondromalacia patella started up in my left knee. Then I ended up with pain in my low back.

And then, about six months after I’d really started limping because of my knee, I developed some issues with the sacroiliac joint (where the pelvis meets the spine, in the low back).

wikipedia SI joint

The sacroiliac joint turned into its own saga, which I will have write about in future posts, because there are basically no helpful articles about it online.

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Things only started to get better for me when I started to work out in a pool, and even then, getting stronger was no easy feat.

I finally feel like I’ve started to figure everything out now; three years later.

It meant I had to let go of a lot of things I’d learned about exercise in the past, and really study some basic concepts in order to help myself.

I had to really learn a lot in order to help myself. It was hard to get help from anyone else, because, as anyone who’s been a patient knows, physical therapists (at least in this country) can only focus on one diagnosis and part of the body at a time.

I didn’t need physical therapy for my knees anymore. Or my hips. I needed to strengthen everything.

I didn’t have just one or two weak links anymore… I literally did not have the baseline amount of muscle that would allow me to walk from one end of the house to another and hold all of my joints in place without pain.  (Both the chondromalacia patella and sacroiliac joint issues were ultimately caused by lack of muscle strength).

So I had to start from scratch. From less than nothing, because I had to find a way to move despite the fact that many of the movements we take for granted were impossible for me.

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Ever since the first time I wrote a description for the “About” section of my blog, I’ve said I planned to write about exercise and fitness. I haven’t quite gotten around to that yet, but now you, my readers, know why I will.

I don’t really plan to write about fitness from a bodybuilding or super-overachiever standpoint. That stuff is interesting, but it’s just so far removed from my daily reality right now that I don’t really have much use for it.

What’s important is the basics. Knowing that if you strengthen a muscle without ever stretching it, you will shorten its resting length. That there is a difference between strength and endurance, and if you only train for one, you will never develop the other. Knowing about this little thing called the Golgi tendon reflex, which will allow you to relax just about any muscle you want just by putting pressure on it (the concept behind foam rolling).

These are things that people with chronic pain can benefit from knowing. When I look back, I can actually see how a lot of my issues with pain—confused nervous system or not—were also related to the fact that I was simply so out of shape from the injuries and periods of inactivity I’d had when I was younger. I mean, yes, I had a heightened pain sensitivity, but at the same time, anyone who was as weak as I was was bound to be in pain. There’s just no way that wouldn’t happen.

I hope the things I’m going to write about will be helpful for you all. I’m going to talk about how my perspective on changed, and how I was able to use what I’d learned from Neil Pearson’s techniques to cope with what I was feeling, while at the same time knowing I had some physical issues that I couldn’t immediately change.

So much has changed in my life, even though all the while to the outside observer, it looks like I’ve been holding still. But that is just so, so far from the truth (sometimes I need to remind myself of that!).

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18 Comments

  1. Thank you so much for sharing what has and is happening to you. I too have struggled with low back and sacroiliac pain. In addition to this, I also have overworked and underused my muscles. I have been going to a pool and walking for thirty minutes a few times a week. I never realized before your blog that there is a difference between endurance and strength training. I was wondering what kind of exercises do you do in the pool to strengthen your back muscles. Thank you so much

    1. Hi Irene,
      I am going to find a way to share with you the specific strength-training exercises I do for the sacroiliac joint. I just have to brainstorm for a little while and think about how to best explain them online…

      1. Thank you so much for taking the time to reply. While you are thinking of the exercises for the sacroiliac in the pool if you know of any exercises in the pool for low back strengthening that would be great as well.
        Thank you again
        Sincerely,
        Irene

        1. Ok, this is a pretty rough draft, but here is a list of my most important exercises. I really hope it’s helpful. At some point I want to put a much more professional-looking version online, but I didn’t want to make you wait for that. Let me know what you think!

          http://sunlightinwinter.com/pool-exercises-sacroiliac-joint-low-back/

          P.S. I have no idea why some of the videos I included actually show up in the page, while others only show up as links. I didn’t do that for emphasis– all of the videos are equally important 🙂

  2. Thank you so much for sharing what has and is happening to you. I too have struggled with low back and sacroiliac pain. In addition to this, I also have overworked and underused my muscles. I have been going to a pool and walking for thirty minutes a few times a week. I never realized before your blog that there is a difference between endurance and strength training. I was wondering what kind of exercises do you do in the pool to strengthen your back muscles. Thank you so much

    1. Hi Irene,
      I am going to find a way to share with you the specific strength-training exercises I do for the sacroiliac joint. I just have to brainstorm for a little while and think about how to best explain them online…

      1. Thank you so much for taking the time to reply. While you are thinking of the exercises for the sacroiliac in the pool if you know of any exercises in the pool for low back strengthening that would be great as well.
        Thank you again
        Sincerely,
        Irene

        1. Ok, this is a pretty rough draft, but here is a list of my most important exercises. I really hope it’s helpful. At some point I want to put a much more professional-looking version online, but I didn’t want to make you wait for that. Let me know what you think!

          http://sunlightinwinter.com/pool-exercises-sacroiliac-joint-low-back/

          P.S. I have no idea why some of the videos I included actually show up in the page, while others only show up as links. I didn’t do that for emphasis– all of the videos are equally important 🙂

  3. Please write about what you are doing to correct all this! I also have a complicated history of pain, Fibro, Cfs, injury, weakness, inactivity, overactivity and that horrible cycle. I have terrible knee pain also that I have been told is just due to pain sensitivity- how do I know if there is anything wrong?
    What exercise should we do when it causes pain and fatigue and doing nothing also causes problems. I am so lost and there is no help!
    Any practical tips for moving towards excersize?

    1. Hi Lauren,
      I have a few thoughts for you. First, I’d be very careful in terms of who you listen to about your knee. I had a physical therapist tell me I could ignore my knee pain, and then it was an orthopedist who told me I had a real physical condition that I shouldn’t ignore.

      These days, my personal policy is that if it seems like my pain is coming from a joint, I always take it seriously and I don’t write it off as a nervous system thing. I’m okay with trying to exercise through muscle pain to see if it gets better, but I don’t mess around with pain that could potentially be coming from a joint.

      I’m obviously not a doctor, but it sounds to me as though you could also have chondromalacia patella. My doctor explained that when someone has generalized knee pain, and the symptoms don’t point clearly to a torn ligament or meniscus, it’s usually chondromalacia patella. There is also no test to rule out chondromalacia patella, so no one can tell you definitively that you don’t have it. I have a feeling that whoever told you the knee pain was due to your oversensitive nervous system might have been oversimplifying things, and painting all of your problems with the same brush.

      In answer to your question about exercise, the only thing that really helped me was to stop working out on land and only work out in a pool for a few months. I wish I had an answer that was simpler, but to be honest, I don’t think I would have gotten better if I didn’t join a pool.

      The pool is great because you can work out and maintain proper form without compensating for your knee or anything else that’s hurting. Every muscle has an ideal length that it wants to operate at, and when you’re hunched over from being in pain, or limping, you’re asking your muscles to work in a position they weren’t intended to work in. This is why for me (and maybe for you) every time I exercised on land, I just felt worse.

      Pools are also great because if the water is even a little bit chilly—and let’s face it, that usually is the case—it acts like a giant ice pack for your whole body. I always feel better after I’ve been in the water for ten minutes, because the water has been reducing inflammation as well as helping to numb the nerves that send pain signals.

      I’ll be writing more about what’s helped me in the future, but I just wanted to put this out there in response to your comment. Hope it helps!

      1. Thank you so much! I am so glad I found your blog, it helps to know I am not alone! We are the same age and share a similar story but I struggle with educating myself and persisting with treatments due to the chronic fatigue which affects my cognitive functioning. Thank you for your response and sharing your journey!

  4. Please write about what you are doing to correct all this! I also have a complicated history of pain, Fibro, Cfs, injury, weakness, inactivity, overactivity and that horrible cycle. I have terrible knee pain also that I have been told is just due to pain sensitivity- how do I know if there is anything wrong?
    What exercise should we do when it causes pain and fatigue and doing nothing also causes problems. I am so lost and there is no help!
    Any practical tips for moving towards excersize?

    1. Hi Lauren,
      I have a few thoughts for you. First, I’d be very careful in terms of who you listen to about your knee. I had a physical therapist tell me I could ignore my knee pain, and then it was an orthopedist who told me I had a real physical condition that I shouldn’t ignore.

      These days, my personal policy is that if it seems like my pain is coming from a joint, I always take it seriously and I don’t write it off as a nervous system thing. I’m okay with trying to exercise through muscle pain to see if it gets better, but I don’t mess around with pain that could potentially be coming from a joint.

      I’m obviously not a doctor, but it sounds to me as though you could also have chondromalacia patella. My doctor explained that when someone has generalized knee pain, and the symptoms don’t point clearly to a torn ligament or meniscus, it’s usually chondromalacia patella. There is also no test to rule out chondromalacia patella, so no one can tell you definitively that you don’t have it. I have a feeling that whoever told you the knee pain was due to your oversensitive nervous system might have been oversimplifying things, and painting all of your problems with the same brush.

      In answer to your question about exercise, the only thing that really helped me was to stop working out on land and only work out in a pool for a few months. I wish I had an answer that was simpler, but to be honest, I don’t think I would have gotten better if I didn’t join a pool.

      The pool is great because you can work out and maintain proper form without compensating for your knee or anything else that’s hurting. Every muscle has an ideal length that it wants to operate at, and when you’re hunched over from being in pain, or limping, you’re asking your muscles to work in a position they weren’t intended to work in. This is why for me (and maybe for you) every time I exercised on land, I just felt worse.

      Pools are also great because if the water is even a little bit chilly—and let’s face it, that usually is the case—it acts like a giant ice pack for your whole body. I always feel better after I’ve been in the water for ten minutes, because the water has been reducing inflammation as well as helping to numb the nerves that send pain signals.

      I’ll be writing more about what’s helped me in the future, but I just wanted to put this out there in response to your comment. Hope it helps!

      1. Thank you so much! I am so glad I found your blog, it helps to know I am not alone! We are the same age and share a similar story but I struggle with educating myself and persisting with treatments due to the chronic fatigue which affects my cognitive functioning. Thank you for your response and sharing your journey!

  5. So excited to read more, you write about all of this SO well!

  6. So excited to read more, you write about all of this SO well!

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