This is the eighth post in an ongoing series. If you would like to start from the beginning, click here.
The last post in this series was the hardest to write, and that’s why, of course, it took me so long.
I was just starting to get a handle on things by my sixth visit. I had gotten brave enough to use the elliptical trainer at home for short periods of time, and was starting to go on short 45-minute hikes. I was no longer afraid of every little ache and pain in my body, but I was holding my breath; afraid it was too good to be true, that one little thing would change and all the pain would come rushing back.
This is the point at which Tim told me my next visit would have to be my last. He said he had done his best asking for extra visits from the insurance company, but they had finally put their food down with this next one.
He reassured me that I already knew everything I needed to know, but promised that I could email him if I had any questions.
Despite all my fears, everything was fine for the next few months. I increased my time on the elliptical trainer, and started going for longer hikes. I knew that if something started to hurt, I would ask myself, “Is this really dangerous?” But I didn’t even seem to really need to– most of the pain was gone, and the pain that I did have didn’t seem to snowball out of control like it had in the past.
Except for my knee.
Knee pain was actually the original reason for my referral to physical therapy. Chondromalacia patella, or inflammation of the cartilage under the kneecap, was the diagnosis I’d gotten from my orthopedist.
But Tim had viewed the knee pain as part of my overall problem with a revved-up nervous system. He told me that chondromalacia patella was sort of a “catch-all” diagnosis, and sometimes doctors just gave that diagnosis when they didn’t know what else could be causing the problem.
So he hadn’t done anything specific to treat the knee. Once he’d seen the 20 X’s I’d marked down on the form that asked where I had pain, he’d switched immediately over to a chronic pain/nervous-system mindset, and had treated me with the protocol he’d learned for that.
I believed Tim of course, because he had helped me more than anyone else ever had. But the fact of the matter is that, even though he was right about the other 19 X’s on the paper, he was wrong about the knee.
I didn’t want to freak out and rush back to the orthopedist, of course. I had taken a leap of faith in trusting Tim when he told me the pain in my back and my ankle was safe to ignore, and I didn’t see why the knee should be any different. I didn’t want it to be different. I wanted everything to be fixed; I wanted to be cured. After years of wandering from specialist to specialist, I wanted my problems to have one answer.
Much of Neil Pearson’s teaching focuses on not beating yourself up mentally, on not forcing yourself to keep going through a pain that doesn’t melt away with the “Is this dangerous?” dialogue. This is, of course, precisely what I did.
I tried to rest my knee, but it didn’t seem like there was any amount of rest that could make it better. I tried ice, and I tried Advil, and I tried to just forget about it. I heard my parents’ voices in my head from all the years of unexplained pain and injuries before: You worry too much. You dwell on things. Why do you have to get so intense about exercise? Just relax.
But ignoring my knee didn’t make it better. In fact, it got worse and worse, rapidly, until even the act of lowering myself down onto a chair was painful. It was high time to admit I had another problem; one that changing my perception of pain couldn’t fix.
So I went to a second orthopedist. Sure enough, I had chondromalacia patella, and it was worse now because I hadn’t treated it. It was bad enough for the inflammation to actually show up on an X-ray, which, I learned, not everyone’s does. But luckily, it wasn’t so bad that I was likely to have permanent damage or need surgery. I just needed to go back to physical therapy, and actually treat it this time.
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For a while, I wasn’t sure whether to include this last part of the story. After all, I really believe so strongly in the potential of this approach to help people with chronic pain, and I hate to end this series on any kind of a negative note.
But it’s important to remember that nothing is a silver bullet; that just because one thing might fix 95% of our problems, it won’t necessarily fix that last 5%.
For this approach to truly help a patient, it has to be implemented in a setting that allows for the type of injuries that won’t go away just by fixing a revved-up nervous system.
The therapist should be looking for two kinds of pain: the pain caused by a revved-up nervous system when nothing is physically wrong, and the kind of pain caused by particular biomechanical issue that needs to be treated. In fact, it’s pretty likely that both will exist in any chronic pain patient, since chronic pain usually develops after a person has been through some sort of extreme injury or medical event.
**************
You might have noticed from my other posts that I harbor a lot of anger and resentment towards the medical professionals whose judgmental attitudes and lack of compassion cost me months, if not years, of normal life when I was younger.
But to be honest, I don’t really blame Tim. He was doing the best he could in an extremely limited setting. He was attempting to implement an approach that he didn’t have a ton of experience with, and that most pain management specialists in this country still even haven’t heard of. And he was going up to bat against both a billing department and an insurance company who didn’t have any idea what he was doing.
I mean yes, technically, he shouldn’t have told me to ignore the orders of my orthopedist. But I know from my own experience as a patient that physical therapists often fill in the gaps left by a physician who was rushing, or who didn’t really care.
And I also know from my own experience working at the mental health agency that everything is different when you’re actually on the job. It’s easy to have the right answers when you’re a student; when you have time to sit and think and put the pencil to the paper and write the right thing.
It’s a whole different story when you’re actually in the field; when patients and coworkers and bosses are all asking something different from you. When you have too much to do and not enough time to do it in; when you’re trying to help a patient as much as you can before her insurance company cuts her off.
************
The reason I decided to include this part of the story is that this approach to physical therapy has the potential to help people even more than I was helped. I am so incredibly grateful for the help I received, and I don’t mean for this to be a negative thing.
Instead, I am excited. What would happen in a setting where the physical therapist had all the time in the world and didn’t have to rush? If he knew he wasn’t the only one who knew about this approach to pain management, and didn’t have to feel like he was going out on a limb or deceiving the insurance company by explaining pain concepts to a knee patient?
Of course, I don’t mean to make it sound like there aren’t already great physical therapists out there who are already doing all of these things. I know from all of the reading I do online that they’re out there; I just haven’t been their patient.
I’m just excited about all of the potential there is to build on what I learned in my experience, which–even with its limitations–changed my life.
***Photo Credit: Elliot Cable on Flickr***
Irene
February 14, 2014 at 10:52 amHi,
Thank you for your post. I have to say it is extremely confusing trying to figure out what is to be served through mind body stuff and what needs to be done by physical therapy. I was just wondering what type of PT did they finally do for your knee that helped heal it and if you went back to Tim for that PT?
sunlight in winter
February 15, 2014 at 12:45 amHi Irene,
To be honest, I’m not out of the woods yet with my knees. The treatment was supposed to be pretty straightforward– basically, I just had to strengthen my thigh muscles– but of course it ended up being way more complicated than that. I was limping a lot, which meant I was moving in a way my body wasn’t meant to move, and I ended up with some pain in my hips and low back. Ultimately, I didn’t start to get better until I joined a pool and started doing all of my workouts in water. (I will have a lot more to say about this in future posts!).
And no, I didn’t go back to see Tim for this. At the time, the treatment for chondromalacia patella sounded really straightforward, and it seemed like the kind of thing any physical therapist would be able to help me with. By the time things got really bad, it hurt my right knee to drive, so I just went some place closer to my house. (I also didn’t relish the thought of going back to tell him what a mistake he’d made, when I was already so grateful for the help I’d gotten).
Hope that answers your questions!
Irene
February 15, 2014 at 12:24 pmHi,
thank you for responding to my questions. I have had a bad back for over 30 years. When I was 25, I had surgery which was supposed to be the cure all. The only thing it fixed was the pain down my leg. I slowly I was able to return to work after years of rest and physical therapy, doing excersies for my back everyday and walking three times a day. I still had trouble sitting for long durations and my back would get really bad where I couldn’t work for a week or so and then had to return to physical therapy. I would exercise slowly, but always got to a point where a certain amount of exercise made me worse, so it was a fine line.
About 6 years ago, my sciatic pain returned and I was back in Physical therapy and my pain was getting worse and worse and I had a harder time sitting for long periods of time. I ended up getting laid off of work and used that time to do physical therapy with the mind body approach and then tried to return to work but I was in severe pain my buttocks would tighten up and pain in my left hip and horrible pain in lower back that feels like a giant hole and im ready to collapse at any moment. After three weeks I had to quit and then my doctor recommended radioablation to the nerves in my back and I was willing to try anything to go back to work and make my life semi-normal. So I tried it and I was in bed for three weeks with severe pain and It really made me worse. I cant sit for more than half an hour and I cant stand for more than a few minutes. I have joined a pool and walk in it three times a week for about a half an hour but afterwards I must go home and lie down on ice for about an hour. Everything I do whether go for a mile walk or run an errand to get groceries or prescriptions I have to go home and lie down for half hour to an hour even to shower and blow my hair dry. So, that is when I started looking into once again the mind body piece of it, but it is so hard for me to tell what is medical as I am fused for two levels from L4-S1 and I do have arthritis above and below the fusion and I have a bone spur on my coccyx bone that kills when I sit for more than ten minutes and I have a labral tear in my left hip. I have tried in physical therapy to do more things by slowly increasing the time of standing or walking, but I get to a certain point and the pain is horrible. So it is crazy for me to figure out what is what.
thank you for listening and for having this blog. I do wish you and everyone on this blog a pain free existence and enjoy hearing about other people’s stories as it helps me with my own
sunlight in winter
February 15, 2014 at 8:57 pmThanks, Irene. I always appreciate your comments.
I can see you’ve been through a lot, and I don’t want to sound like I’m oversimplifying things, but I just wanted to mention two things that I learned the hard way, which might be of help to you.
1) I don’t know if anyone’s told you this, but I think you might get a lot more benefit from doing things in the pool that involve floating in a vertical position, rather than walking. When you’re letting your legs hang down in deep water, this allows all of the joints in your lower back to decompress and your muscles to stretch out. There are all sorts of floatation devices you can pick from, and you can decide what’s best for you, whether it’s the traditional “aqua-jogging vests” or an arrangement of other equipment. This is a Youtube video which I like a lot which shows a patient floating using noodles (after the 2:30 mark) http://www.youtube.com/watch?v=B3HZMYioGNE&list=PLxeqb89fwCb1oYwOqF2NHU7SDQAhn8RAO
2) There really is a difference between strength-training and cardio. It took me a really long time to figure this out. I was so weak when I started that cardio was completely exhausting, but after a while I hit a plateau and I didn’t get better until I start doing specific strength-training exercises that really worked my muscles to the point of exhaustion. Walking 30-minutes in the pool is great, and it’s definitely building your endurance– which is equally important– but it is not the same thing as strength-training.
I would look for a physical therapist, or even a personal trainer, who specializes in aquatic therapy. At one point, I just decided that at this point in my life, I would not exercise on land. Every time I did I got worse. So I stopped going to land-based PT all together.
I also love all of the HydroWorx videos on Youtube– you could watch those for ideas. http://www.youtube.com/watch?v=B3HZMYioGNE&list=PLxeqb89fwCb1oYwOqF2NHU7SDQAhn8RAO
Irene
February 15, 2014 at 9:44 pmThank you so much for taking so much time to reply to my email!! I really appreciate you taking the time to address all the points that you did and even going through the trouble of finding videos that I could learn from. You are such a wealth of knowledge. No, unfortunately no one has told me as much as you have. I cant thank you enough. I look forward to watching those videos.
thank you so much
Irene
February 14, 2014 at 10:52 amHi,
Thank you for your post. I have to say it is extremely confusing trying to figure out what is to be served through mind body stuff and what needs to be done by physical therapy. I was just wondering what type of PT did they finally do for your knee that helped heal it and if you went back to Tim for that PT?
Neil Pearson
February 15, 2014 at 12:27 pmThanks for posting this.
I am certain many people have experienced the same troubles as this. A label is provided, and then everything that comes up is seen as part of this problem, rather than potentially something different, or something that requires specific, and different treatment. As patients we struggle with not being heard, and can be made to feel as if we are worrying too much. As health professionals, (I know we shouldnt but…) we struggle with listening, and we can miss the importance of assessing other problems that might not be part of the diagnosis we have given. In the end, the way you knew that your knee pain was different, was that it did not respond to the other interventions. Hopefully by reading this, health professionals will also consider that the way they can help with troubles like this, is to assess the knee, and if there are signs of a mechanical or biomedical problem, then treat it, at the same time as working to calm the nervous systems. Or, to say this in a different way … When there are wound-up nervous systems, we health professionals need to stop ignoring the tissues of the body, and all the rest of the systems of the body.
Thanks for your understanding and patience. As a profession, we are moving in the right direction.
When I read of situations like this, it makes me think how I can do a better job of teaching PTs, so they don’t fall into this trap.
I will try harder.
Neil Pearson
February 15, 2014 at 12:27 pmThanks for posting this.
I am certain many people have experienced the same troubles as this. A label is provided, and then everything that comes up is seen as part of this problem, rather than potentially something different, or something that requires specific, and different treatment. As patients we struggle with not being heard, and can be made to feel as if we are worrying too much. As health professionals, (I know we shouldnt but…) we struggle with listening, and we can miss the importance of assessing other problems that might not be part of the diagnosis we have given. In the end, the way you knew that your knee pain was different, was that it did not respond to the other interventions. Hopefully by reading this, health professionals will also consider that the way they can help with troubles like this, is to assess the knee, and if there are signs of a mechanical or biomedical problem, then treat it, at the same time as working to calm the nervous systems. Or, to say this in a different way … When there are wound-up nervous systems, we health professionals need to stop ignoring the tissues of the body, and all the rest of the systems of the body.
Thanks for your understanding and patience. As a profession, we are moving in the right direction.
When I read of situations like this, it makes me think how I can do a better job of teaching PTs, so they don’t fall into this trap.
I will try harder.
sunlight in winter
February 16, 2014 at 5:14 pmHi Neil,
Thanks so much for your comment. It really means a lot to know that my experience is resonating with others, and that my words can have an impact.
Bev
February 18, 2014 at 7:17 amI think you made the right choice posting this. This part of your story does not undermine the overall message you are getting across, it simply highlights just how complicated things can get when you already have a wound up nervous system. I am sorry to hear that you are still having problems and I wish you luck in your recovery.
sunlight in winter
February 18, 2014 at 9:32 amThanks so much, Bev. Glad to hear you think I made the right decision.
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rachelmeeks
October 24, 2014 at 10:53 pmhttp://doilooksick.com/2014/10/25/health-activist-heroes/ – Hi there! I featured you as one of my personal health activist heroes! Check it out!
rachelmeeks
October 24, 2014 at 10:53 pmhttp://doilooksick.com/2014/10/25/health-activist-heroes/ – Hi there! I featured you as one of my personal health activist heroes! Check it out!
Brandy Milford
November 21, 2019 at 11:56 pmAfter reading your story, I have an ounce of hope. I don’t even remember how I ended up on your blog…all I know is that I was searching for chronic pain coping strategies, I was just clicking random useless links that led to senseless repetitive strategies filled with absolutely nothing relatable. I could barely see the screen because I couldn’t stop crying. I read one line of your story & ended up reading all 6 parts. I can’t wait to read the work of Neil Pearson, I saved the link you provided to his videos as well. Thank you for sharing, I needed that ounce of hope more than you know.
Christy Collins
November 22, 2019 at 8:26 pmHi Brandy, I’m so, so glad my story could help you in this way. Things can definitely get better– I know. Wishing you the best of luck moving forward!
Brandy Milford
November 21, 2019 at 11:56 pmAfter reading your story, I have an ounce of hope. I don’t even remember how I ended up on your blog…all I know is that I was searching for chronic pain coping strategies, I was just clicking random useless links that led to senseless repetitive strategies filled with absolutely nothing relatable. I could barely see the screen because I couldn’t stop crying. I read one line of your story & ended up reading all 6 parts. I can’t wait to read the work of Neil Pearson, I saved the link you provided to his videos as well. Thank you for sharing, I needed that ounce of hope more than you know.
Christy Collins
November 22, 2019 at 8:26 pmHi Brandy, I’m so, so glad my story could help you in this way. Things can definitely get better– I know. Wishing you the best of luck moving forward!