TriAgain's Success Story (Part II)

Now for part two of TriAgain’s knee pain story. There is a large section of his account where he talks about finding my book and blog, which I will not include here, so as not to (1) be accused of self-stroking :) (2) repeat what those of you who read my book already know.

He also mentions finding other success stories: “Ted” from California, Luis and his wife from Bolivia, and Terry42 from KneeGeeks.
 
And he talks about three other big influences (you’ll find all three on this blog; just do a search):

(1) Scott Dye and his framework for understanding knee pain in terms of “tissue homeostasis” and “envelope of function”
(2) Paul Ingraham, a really cool writer, hard-nosed skeptic, and myth buster
(3) Doug Kelsey, an Austin, Texas, physical therapist whose thinking is like a breath of fresh air in a stuffy attic

Instead of condensing what he wrote about Dye and the others, I’d like to focus on a diagnosis he said he received. I think it’s useful partly because this was NOT my diagnosis (nor do I think I had it, based on the symptom set), but I bet a lot of other knee pain sufferers would find it relevant.

The condition is called “complex regional pain syndrome,” which sounds like phantom pain at first – but it definitely is not. So here’s TriAgain (again):

“Some posts on KneeGeeks suggested I should research CRPS.

CRPS stands for Complex Regional Pain Syndrome. It sounds like some BS that is all in your head (you are imagining and/or making more of the pain than you should) – except it is not. It is real neurological changes in the ganglia of the spine and brain, and sometimes the local nerves in the affected area. What this does is massively increase your sensitivity to pain.

The 13-year-old daughter of one of my board members got CRPS after hurting her knee at soccer – except the pain was in her foot. She was in agony with terrible burning pain, and even the light touch of a sheet on her foot made it worse. She spent two weeks on a ketamine drip (nasty stuff) and had mirror therapy and other interventions to rewire her neural pathways. It was a 12-month recovery process.

Full-blown CRPS has symptoms including burning pain, discolouration of the skin, clammy or sweaty skin, extreme sensitivity to touch and pressure. I had the burning pain and discolouration in my kneecaps, so thought I should ask my GP about it. He agreed it was a distinct possibility. In the meantime I’d found a top pain specialist and got a referral to see him.

The pain specialist diagnosed patella chondromalacia (which I already knew, but don’t think is my main problem), muscle wasting around the knees (not surprising) and pre-CRPS, which meant not full blown CRPS, but getting there.

He prescribed a whole host of things:

* A book on pain management (good, but seemed to be suggesting the need to accept your pain and get on with life. I later found material which indicated through neural exercises you can overcome pain.)

* Natural supplements to reduce pain

* A nerve pain medication (Lyrica) which is pretty nasty. It made me very hazy and though I got some initial relief, weaned myself off it after a few months as I couldn’t function at work

* PRP injections – I had three in each knee and this guy only charged $110/pop. These gave some almost immediate relief, I’m sure helped with cartilage healing, but were not the magic bullet. I still had to be very careful.

* The only negative – the dreaded single-leg shallow squat within the range of no pain to re-build my VMOs. As stated above, impossible and counter-productive, though to be fair you can’t expect a pain specialist to be a knee expert and know the theory of envelope of function.

* One other treatment for CRPS is a controlled and graduated return to activity to rewire the central nervous system to learn that the physical activity causing you pain is not actually doing you physical damage. This led me into some very useful material on neuroplasticity (anyone see the Todd Sampson program ‘Redesign My Brain’?).

The take-home message: the whole CRPS experience led me to some excellent work on central nervous system rewiring techniques, and while not the entire answer, had a host of benefits.

Having figured out the conventional wisdom (leg muscle strengthening) was not working, I had to find another way.

Before the move, I’d long since given up cycling and running, and even kicking while swimming was starting to look highly suspect. At the new flat, there was a little 15 min walking circuit I would do every morning.

One positive to come out of my tri training program was lots of pull and band swimming, so I did nearly all swimming like that to limit kicking. Several times I tried getting back on the bike and for a few weeks, thought I was getting on top of the pain, but then went backwards again.

So I walked for 20-30 mins every morning before work, and either swam, did the little gym circuit, walked on a treadmill for another 15-20 mins, or did upper body weights at lunch/on weekends. I did this for about 12 months.

Between then and now, I’ve had up to a 90% improvement in the knee pain level, and a 50% improvement in function. However, it can fluctuate and go backwards at times.”

End Part II

TriAgain’s Success Story (Part 1)

I’m trying something different for this post and the next two.

Over the years, I’ve hit a lot of the high and low notes of my own story. I always encourage others to tell their stories too – while you may learn something from me, you may learn a lot more from someone else whose symptoms and experiences are more similar to yours.

One of the first regular readers of this blog was an Australian triathlete posting as “TriAgain.” Early on, I could tell that he was deeply committed to fixing his knee pain. Over time, his story emerged in bits and pieces.

Then, a couple of years ago, he detailed his entire experience in a triathlete forum. I asked him if I could use an edited-down version here, while linking to the full account, and he agreed. Little did I know his story, once I had cut and pasted all the pieces, comprised almost 10,000 words (by way of comparison, a short novel is 60,000)!

It’s all very good, and I encourage you to read the full version here (warning: it is scattered over multiple posts). For my blog, I decided to run a much-abbreviated account in three parts: (1) the early days: pain, diagnoses, frustration (2) the turnaround (3) lessons learned.

I chose to do it in three parts, for one, because I just got a new, demanding job, so I have less time to devote to the blog right now.

Here’s the first installment of TriAgain’s story below. Note that he started writing this on Sept. 1, 2015, more than two years ago. Since then, his condition has improved a lot.

"I’ve not been able to train or race for over 3.5 years now due to chronic anterior knee pain, burning and stiffness in both knees. The chronic pain came on within a month of having a piece of torn meniscus removed from my left knee (it tore unexpectedly while running). This happened within two months of my best race ever at Gundi in 2012, at age 48.

By the end of 2012, I had the knees of a 90-year-old. They ached, burned, were stiff. I could not kneel, squat, crouch, jump. Sitting at my desk was hell. I put boxes under the desk to sit with my legs out straight, as they were worse when bent. In addition, my kneecaps were often cold and discoloured blue/purple with red blotches.

We had to sell our house because I could not maintain the large garden anymore.

Straight after surgery, I'd asked my orthopaedic surgeon (OS) who had trimmed the meniscus what I could do and he said “anything you think you can cope with.” In hindsight, and given what I now understand, this is the worst possible advice.

But I happily took his advice and was back on the bike for one hour rides at 50-70% of pre-surgery effort within six days of surgery in late May 2012. By June 2012 I was in constant pain in BOTH knees. In fact the knee I'd not had surgery on was the worst.

After several months of pain, stiffness and loss of function, which I thought would abate if I backed off but did not, I started seeking more medical advice.

My OS started talking lateral releases (the good old misalignment or patella maltracking theory), but by this time, I must have done enough research to be very wary of surgery.

My GP referred me to a sports doctor. He diagnosed chondromalacia patella – which is essentially degeneration of the cartilage behind the kneecap, and was correct (I did have damage behind the kneecap), but not I believe the cause of such constant pain and loss of function.

Chondromalacia patella was not new to me. My father was a GP and diagnosed it in my right knee as young as 14. I smashed the hell out of my knees as a kid, played rugby league and later union from ages 5 to 22 and took some massive front-on kicks to my kneecaps.

The first sports doctor suggested microfracture surgery (which incidentally, he’d had successfully himself) or PRP (blood platelet injections which he could do at $500 a pop). Again, it was more surgery, so I decided against it.

During this time, I was still visiting my physio and GP. Their view was that my patella was maltracking laterally, and I needed to strengthen my vastus medialis oblique (VMO) muscle to pull the kneecap back into alignment. This was despite my physio previously putting a machine on my VMO and concluding that it fired just fine.

So it was off to single-leg squat land, and sitting down with a leg out while tensing the VMO, focusing on firing the VMO at the same time as the outer quad. All of this had to be done within the boundary of zero pain. So only squat to an angle where no kneecap pain occurred. This was absolutely impossible, because my knees hurt all the time.

During this time, I’d been posting about the problem, and it was suggested I see a sports doctor at a different club who was a knee expert. He concluded there was nothing wrong with my VMOs at all, and there was minimal patella maltracking. The problem he felt was hip and glute instability.

So I did the glute/hip exercises prescribed, improved my strength and function quite a bit, but the knee pain did not resolve one iota. He also suggested I stop running (which I had anyway) but continue cycling (which, in my view, produced more pain than running).

Life became depressing. I had constant pain. All I wanted was to lie down with my legs up to reduce the pain. The mood was pretty dark. I wanted to drink alcohol as it reduced pain. The joy went out of everything. I was completely obsessed with the knee pain and sinking into mental illness."

End of Part 1

Why I’m So Optimistic About Cartilage Healing, Take 2

I got a comment from a reader below this post. If you remember, I was looking at a two-year study that showed a surprising number of improvements in cartilage defects (well, I found the number surprising anyway). This reader was less enthusiastic:

If I am interpreting the study correctly, most of the defects of the patella actually progressed. For younger people, perhaps for the majority of this site readers, this is bad news. Perhaps, I am wrong, but it seems to me that most of us here suffer from chondromalacia, of one degree or another, and as it is about patella cartilage damage, there isn't much joy in that study. There's another one from 2008, where the level of degradation of patella lesions was high compared to all the investigated knee compartments and the percentage of cases where improvement of a lesion was observed was abysmal.

First, let me address a couple of quick things: (1) Yes, I’ve seen a study too where defects in the patella cartilage didn’t improve as often as defects in cartilage elsewhere in the knee – but still, there were some instances where they did improve. (2) To clarify, the study I reference in the post isn’t looking at just defects in the cartilage behind the patella, but rather, throughout the knee.

Okay, a quick recap:

The table below is from a study, “Factors Affecting Progression of Knee Cartilage Defects in Normal Subjects Over Two Years.” The 86 people who participated had MRIs done of their knees at the start of the study, then two years later.

The condition of each subject’s cartilage was graded for five different knee compartments (at baseline, and after two years). The scoring again goes like this:
Grade 0 = normal
Grade 1 = focal blistering
Grade 2 = irregular surface and loss of thickness of less than 50%
Grade 3 = deep ulceration with loss of thickness of more than 50%
Grade 4 = full-thickness wear of cartilage with bone exposed

Okay, so did most of the defects in the study progress? Well, yeah. Of course. But it doesn’t matter because you have to adjust for the “floor” and “ceiling” effect.

In this case, “floor” means a defect can’t get worse. “Ceiling” means it can’t get better.

Example: If a defect is graded “0” at baseline, two years later, it can only be “0” or worse. It can’t get any better than 0. There is no -1! Conversely, a defect graded “4” at baseline can only stay the same or (if indeed cartilage can heal) can get better.

Now, look at the number of defects that have a “ceiling” effect (grade of 0) or a “near ceiling” effect” (i.e., defects initially graded 1).

There are 117 that start out with a “ceiling” effect (just add the numbers in the first row) and 196 with a “near ceiling” effect (that's the second row). So for this group of 509 defects, there’s a high chance they’re going to get worse. Sure enough, we find a whopping 389 got worse. Awful, right?

Not at all.

Look at the bottom of the table. Here, our attention turns to the “floor” effect (defects with an initial grade of 4) and “near floor” effect (initial grade of 3). There are 5 defects with a “floor” effect and 14 with a “near floor” effect.

How many defects improved? Only 10 – which seems like a small number compared with 389, but consider that we started with only 19 (yes, I know, “small sample size” alert).

Of course, when you look at the number of changes overall, many more defects got worse because most faced the ceiling effect. But look at raw percentages, and the story becomes more interesting:

Defects that started in the “ceiling” or “near ceiling” effect categories
Got worse: 76%
Stayed the same or got better: 24%

Defects that started in the “floor” or “near floor” effect categories
Got worse: 26%
Stayed the same or got better: 74%

Wow! Almost a perfect inversion!

Now, why does this matter (once again) if you really care about cartilage healing (which, again, you shouldn’t obsess about in the first place, because pristine cartilage isn’t a sine qua non for eliminating knee pain).

Because if cartilage really can’t heal, all those defects graded 3 or 4 should be staying the same or getting worse; three-quarters of them shouldn’t improve!

One last fun thing in closing: is there a line in the table (you’ve probably already spotted it) where we can escape the “floor” and “ceiling” effects as defined here? Sure: at baseline, 88 defects landed smack dab in the middle of the table, receiving a score of 2. That means a loss of thickness of less than 50 percent.

Now notice what happened to them two years later. Yes, eight were found to be worse. But more than three times as many, or 27, improved to a grade of 1.

So that’s why I see the glass as half full (even though, for the umpteenth time, don’t obsess over cartilage healing!).

Open Comment Forum: What’s the (Surprising) Thing That Your Knees Hate?

It seems like we’re overdue for another open comment forum. Talk among yourselves in the comment section below!

What you can use this forum for: (1) Introducing yourself, and some of the knee pain challenges you’re grappling with (some other readers may have a thought or two about what might help you (2) Including a status update of how you're doing (3) Writing about anything else you want to!

If you’re stuck but want to contribute something, here’s a question to get the ball rolling: What’s the (surprising) thing your knees hate? In other words, if you say your knees hate carrying an 80-lb. safe up six flights of stairs, no one is going to be surprised. If, however, your knees hate warm massages, well, that’s a bit odd.

So there you go! I hope everyone is doing well. I just finished riding 52 miles on my bike; the legs feel tired, but in a good way. The knees continue to be happy. Cheers!

Unloading Your Joints: More Proof It’s the Way to Go

I’m a fan of Boston professional sports teams, so I follow a lot of news about them. That includes injury reports, unfortunately.

In October – exactly six minutes into the NBA basketball season – the Boston Celtics lost forward Gordon Hayward for the season. He broke his ankle in a gruesome injury.

Hayward is slowly, slowly rehabbing. He recently posted an account of what his recovery is like, and I thought it worth mentioning for a couple of reasons.

One: Does this sound familiar?

The hardest part of all of this is the mental grind. It's a lot of time doing pretty boring things to get the slightest bit better every day, and of course, sometimes I don't get better. Sometimes I take a small step back because my ankle didn't react well to the thing that I did the day before. And so we have to walk it back a little. That's the hardest part, and the most frustrating part for sure.

Anyone in a long-term recovery program for chronic knee pain can identify with this agonizingly slow pace of healing. Still, recognizing this is how healing happens -- little steps forward, then backward, then repeat -- is useful to avoid getting too discouraged.

Also, of course, notice his mention of those nagging setbacks that you're going to face. You will make mistakes, and push a little too hard some days, and that will lead to frustrating delays.

Two: Listen to how Hayward is exercising his ankle.

... I am slowly progressing with the AlterG. This is the first time I’ve ever used the AlterG, and if you don’t know what it is, it uses air pressure technology to allows you to rehab without putting your full body weight on your legs. It’s like you don’t have the full effect of gravity on you (which is where the name comes from).

We all know what AlterG is, right? (I wrote about it here.) AlterG is a rather expensive piece of equipment that allows you to run and walk on a treadmill at less-than-normal forces. While it costs more than a total trainer, the objective is similar, and involves lightening the load on your hurting knees (or ankle).

Gordon Hayward is a $30 million-a-year man. That’s a big contract. He could afford any kind of rehab he and the Boston Celtics wanted. That they chose a piece of technology that’s essentially a cousin of the total trainer should convince you that the joint unloading approach really works for the smartest, quickest recovery.

It’s not just Doug Kelsey and me saying it – it’s the medical staff of the Boston Celtics, dealing with athletes who make far more money in one year than I’ll ever see in my lifetime!

Osteoarthritis, and a Post-Industrial Era Mystery

The latest issue of Harvard Magazine looks at a curious mystery.

Two biology researchers from Harvard University discovered the mystery after visiting medical institutes across the country and examining skeletons over the centuries.

They were searching for evidence of knee osteoarthritis (bone-on-bone rubbing in places where the cartilage has completely eroded, which leads to polished bone surfaces that are a telltale sign of the disease).

When they compared the skeletons from the prehistoric and industrial eras to those from the postindustrial, they found that the prevalence of knee OA has more than doubled since World War II.

You might think: Sure, of course it’s higher. People live longer. More people today are obese.

But controlling for age and body mass index didn’t make the difference go away. To be sure, obesity contributes hugely to knee OA. But it wasn’t causing the spike in cases.

The researchers still aren’t sure what’s going on, but they’re testing a hypothesis that I think will yield their answer.

Physical inactivity, they speculate, may be what’s to blame. The mid-twentieth-century shift to service-sector jobs put more people in workplaces where they got less movement. The modern desk rat was born.

We sit, and sit, and sit, and sit, and then wonder one day why our knees hurt.

Because our knees weren’t designed to do nothing at all for long stretches?

Or, as the article says, in more prolix language: there’s a “suspicion that OA is a case of human physiology being partly maladaptive to modern environments.”

Healthy, joint-nourishing motion IS important.

This, I believe, is the key to preventing knee pain, or once you have it, recovering your pain-free knees once again.

The Difficulty of Taking a Step Backwards to Move Forward

With New Year’s resolutions thick in the air, I thought this might be a good time to talk about what might be the hardest thing to do when trying to heal aching knees.

A lot of people, especially fit people, quickly take to heart my message of “motion” when it comes to healing. After all, living things that stay at rest gradually become weak and begin to fall apart.

So athletic people immediately want to go outside and start walking 5,000 steps a day to recover their knee health.

But the motion imperative can be very dangerous, as too much motion just leads to more knee pain. The key, I strongly believe, lies in figuring out the “proper amount” of appropriate motion. And, as I've said many times before, determining the “proper amount” can be very, very hard, especially initially.

What’s sometimes needed is a willingness to go backwards to go forward.

For me, that involved scaling my program way, way back. I went from walking thousands of steps a day to simply walking once around a pool and resting for ten minutes, then repeating the sequence. Talk about boring! This also represented a kind of “rock bottom” moment for me – if that’s all the movement my knees could tolerate, they must be much weaker than I imagined.

As it turned out, hitting rock bottom was one of the best things that happened to me. I needed to accept where I was – where I really was, and not where I thought I was – to start improving. Those simple pool walkarounds made my knees feel consistently good, and I needed that. I needed to escape the frustrating swings of emotion, where my knees felt good for a few days, then bad for a few, and my progress seemed to stall.

Going too fast, too aggressively, can leave you baffled and frustrated. Sometimes it pays off to go backwards – figure out the least strain you can put on your joints, while having them consistently feel better.

Once you establish that baseline, then you can start to move forward.