In my post last week, I promised to fill you in on what’s been going on for the last couple of months since I’ve been too busy eating fro yo to keep this blog current. This is the first post this week in an effort to fulfill that promise, and we’re heading all the way back to February… If you’re not interested in reading a meandering post that covers about three months of “stuff,” then stop reading here.
I’ve mentioned very briefly that I had a minor setback in February (you can see the two references here and here). I want to apologize now because I wasn’t completely honest with you. It wasn’t a minor setback. It was, by far, the most soul-crushing setback I’ve experienced.
I avoided talking about this because 1) I simply wasn’t ready to share in this space, and 2) I was busy meeting new doctors. I want to share this part of the journey/recovery now just in case there is someone who is walking the same path who can find some solidarity in knowing they’re not alone.
So… February. I started to have more pain when doing my PT exercises about four weeks after the scope in January. This happened shortly after I returned to work full time and started more difficult exercises. Since I didn’t have a huge increase in pain (there was a definite increase, but it never got worse than before surgery), I wasn’t terribly concerned. It sucked, but I’d work through it like all the other times.
Then my knee got swollen and hot. Really hot. Like, radiating-heat-through-my-pants hot. This doesn’t typically happen to me. I get swollen enough for my knee to feel stiff, but it never gets hot. My PT was concerned when I had pain with a relatively light touch and started working with me to control the inflammation. She had me doing all sorts of things to help bring down the swelling–icing, elevating the leg 90 degrees by putting it on the wall, massaging the knee and taping to combat edema. The knee started to respond, but slowly.
About 10 days after the first sign of a problem, I had a regularly scheduled post-op appointment with my OS, and that’s when everything went haywire. My PT was able to join us for the appointment. I thought that was good because she can articulate much better than I can what’s going on with the knee, especially in therapy. I was wholly unprepared for the conversation, but in hindsight, I probably should have seen it coming.
My OS and PT started talking about how pain–chronic pain–isn’t always due to a mechanical issue or structural problems. They started talking about hypersensitivity, and I just sort of lost focus. I listened to them, but I didn’t hear what they were saying. They said it didn’t make sense that my knee had taken a turn four weeks out from surgery–that wasn’t “normal.” They talked about central sensitization and how that might be what was happening to me. In those brief minutes, I felt like I’d lost all control.
What they were telling me, regardless of what the actual diagnosis would be, was that there was virtually nothing that I could do to stop what was going on. To get better. This wasn’t something that I could work out in physical therapy or ride out on the bike. This was my body betraying me.
I bottomed out over the next few hours and days. I went crazy on the bike. I pushed myself way past my limits in the gym. I started swimming like a person possessed. I had decided, consciously or not, that I could will this problem away. If this was a problem with my nervous system, I could engage my brain (a pretty important part of the nervous system) to master the problem. To make it disappear.
I was pushed right up to the figurative ledge. I have to credit my PT with pulling me back and talking some sense into me. She explained why they thought it might be problem with my nervous system and helped me better understand why I was being sent to a pain specialist (not the guy who prescribed all those narcotics last year).
In the time between making the appointment and actually going to the appointment, I spent a lot of time online trying to find out more about chronic pain and its causes. I also spent hours pouring over journal articles about pain hypersensitivity and central sensitization. The more I read, the more I was convinced that this was not my problem. I had only one symptom that fit–pain.
In the end, after two frustrating appointments (frustrating because I didn’t get anything out of them), the pain specialist agreed with me. I did not fit the diagnosis of central sensitization. On one hand, I felt validated in my reluctance to accept that this was the problem. On the other, I was disappointed because, by that time, I was hopeful that she could offer some help. Instead, she essentially told me I was already doing all the things she would tell someone in my position to do. She was reluctant to offer treatment because she didn’t see my pain as chronic since I’d had surgery in January (only about 10 weeks before I saw her). She also couldn’t believe I wasn’t on some kind of narcotic pain medication; I explained that those all made me sick. So I was left with no diagnosis and no offer of any treatment.
While I was waiting for the first appointment with the first pain specialist, I went to see a different kind of pain doctor–one who specializes in musculoskeletal pain and sports medicine. He also did not think I fit the diagnosis of central sensitization. He mentioned a few things that we could try, but he wanted me to first seek a second opinion from another orthopedic surgeon just to make sure that nothing had been missed and that there wasn’t a structural problem that should be addressed. While I appreciated his approach, I’d had about enough of the OS’s. I was also making progress with my knee by this point, so I opted out of another opinion from another surgeon. The pain was still there, but it was changing… improving in some ways.
So after a few months and several appointments with new docs, I was left in the same spot I was in before this nonsense. I continued to work with my PT (one thing ALL the docs agreed on was that I should keep working with my PT), and we kept working on a plan that strengthened the muscles in my leg to help the knee function properly. In doing so, we discovered a few things like how I don’t use my tibialis anterior properly and that my IT band is tight.
I’ve skimmed over a lot of the details about the frustration, pain and even anger because this is all in the past, and I don’t like to dwell on it. I prefer to move forward.
The big silver lining to all of this is that I picked up swimming, and, about eight weeks later, I had finally managed to build my VMO to a point where we could actually see some definition. Since that point (almost three months ago now), I’ve made more progress than I made in all of 2013.
Since this is turning into a novel, I’ll wait until the next post to tell you about the other things I’ve been doing (I’ve moved into uncharted waters) and where I am today.