Saturday, June 16, 2018

When You Lose the Thread Between Cause and Effect

Knee pain is often a strange, baffling thing.

I tried to figure it out. I eventually healed my own hurting knees, and learned enough that I was motivated to write a book about my experience.

But at the same time I knew there was a whole lot I didn’t understand (and neither did the smart people out there who study the origins and treatment of knee pain).

One thing I always tried to do: draw lines between cause and effect, especially when I had a setback on the long road to getting better. For me, setbacks were like small teaching moments: my body teaching me something, very important, about how I should go about healing.

Sometimes it’s easy to draw that line. If you carry a heavy backpack up six flights of stairs, then have knee pain the next day, or a couple of days later, what caused it isn’t much of a mystery.

But what’s frustrating are those setbacks when you can’t point to a likely culprit. What then do you do? What if your knees hurt worse then ever, out of the blue, and you can’t figure out why?

These are the good, hard questions. I’ve thought about them more since I started the blog, as a stream of readers have confronted me with issues that weren’t always ones I had to deal with, but that usually made me think.

My gut feeling – and this may work for you, or may not – is to hit the reset button and scale back your activity significantly. Maybe try returning to your activity level from a couple of months before?

But I would be reluctant to go “full couch potato.” I’m not saying it doesn’t work for some people, because apparently it does. But I’d rather find a way to get in some motion, even if I’m seated and resting my feet on a wheeled dolly that I slide back and forth, back and forth.

It can be maddening to be racking up small wins over three or four months then have a weird, sudden, inexplicable setback. But they happen. I think there is a reason for all setbacks, because I’m that kind of logical “things happen for a reason” kind of guy.

But let’s face it: the human body is a very complex stew of chemicals and cellular processes, all interacting in complex ways. It shouldn’t surprise us that the results of some of these interactions are close to unknowable. And some of them probably lead to unpleasant knee pain symptoms.

So, even if you can’t figure out what caused your setback, carry on. Don’t get too discouraged. Try to figure out what you can, but I think there will always be mysteries.

Saturday, June 2, 2018

On Experts, and a Growing ‘Antipathy to Expertise’

A recent article in Harvard Magazine, “The Miracle of Knowledge,” gave me occasion to reflect on my ordeal with knee pain. A political scientist by the name of Tom Nichols has noticed in American public discourse “a new and accelerating – and dangerous – hostility toward established knowledge.” The article refers to it as an “antipathy to expertise.”

The article caught my eye, because in a sense I suppose my knee pain recovery can be construed as an “antipathy to expertise.” Ultimately I rejected what my doctors and physical therapists – the true experts – told me about my prognosis for healing, and about what my treatment should consist of. I became a Google’ing omnivore, devouring all I could find about knee pain similar to mine, and sifting for clues about how I could beat this condition.

In the end, I think I proved the experts – at least those in my immediate circle – wrong. I healed, when I was told I couldn’t, and did so by rejecting the core muscle-strengthening advice of my physical therapist. If there were a parade of “don’t trust the experts” activists you might expect me to be right up front.

Except I wouldn’t be. Not at all.

In fact, I pretty much agree with Nichols. I'm also worried about the erosion of belief in experts, which is all too often replaced by the conviction that an ignorant opinion, or a private consensus reached after consulting the Google hive mind, works just as well. “Who needs doctors, climate scientists, whatever?” This attitude frightens me because today, more than ever, a cavalier disregard of facts and truth is becoming acceptable.

So to be clear (and some of you have heard this before):

* If you have knee pain, I would always start by seeing a doctor. In comments on this blog, I’m careful to say that. At the least, a doctor can order imaging and other tests that can shed light on what’s going on in your joint. But more than that, a doctor will typically have the intelligence, breadth of knowledge, and experience (gained from examining scores of patients like you) to make a better diagnosis than Mr. Google.

* My rejection of the experts wasn’t knee-jerk and immediate. It arose from three main things:

(1) Doctors never gave me a plan for getting better. A plan – “do this, then this, then this” – I would have respected. A fatalistic shrug, or the tepid suggestion to avoid activities that bother my knees – that feels like a dereliction of duty.

(2) In other cases, the plan I was given failed. At some point, when confronted with repeated failure, you have to wonder, “Is it just me or could the advice I’m getting be faulty?”

(3) I tried to approach the puzzle of my knee pain in a scientific-minded way. If my doctors knew X and Y, I looked for Z, the thing that perhaps clinical trials had discovered, but that wasn’t commonly accepted when my doctors were being taught in medical school, five, 10, 20 years ago. An example: I located a clinical study where cartilage defects improved, at a significantly high rate. This is part of what informed my optimism about my knees getting better. And I also looked for smarter, out-of-the-mainstream experts. I was lucky to find a few.

So with experts, I would not reject their opinions out of hand. Experts are experts for a good reason. But there are times when they are wrong, and that possibility, no matter how small in a given instance, can’t be overlooked. They are not some monolithic, omniscient body. They are people. And people are fallible.

Saturday, May 19, 2018

Open Comment Forum: Anyone Want to Discuss Setbacks?

So I got this comment recently, and thought the writer made a good point:
I have not seen much detail on setbacks in the book and here. You and others mention them, but I am always hungry for more detail to help manage my expectations (do they last days or weeks for others? What works when they happen? etc.) I wonder if another Open Comment Forum on this topic would be useful at some point.
Yes, setbacks are incredibly frustrating for someone working to rehab bad knees: you're slowly getting better, getting better, getting better ... then all of a sudden, you slide backwards. Healing then becomes something like a cruel mirage. Will you ever be pain-free?

So, below, I invite all of you out there to discuss setbacks. It would be especially useful to hear from those people who successfully battled through them: How frequently did you find yourself dealing with setbacks, how long did they last, what did you find was the best approach to overcoming them (regarding state of mind, reduction in movement, etc.)? What caused your setback in the first place (if you know)?

Or, again, feel free to talk about whatever. Open comment forum! I'm out!

Saturday, May 5, 2018

Why Knee Pain May Be the Best Thing That Ever Happened to You

I’ve written a post similar to this before, but decided to revisit the topic to share a new anecdote.

First, for those who don’t know me well, this isn’t some sentimental wallow that someone might expect to go like this:

You'll look back on your knee pain and feel grateful for it, because you develop an inner strength to cope with adversity and discover the truly meaningful things in life etc.

Honestly, by dealing with knee pain, you may learn you possess an inner fortitude, and I’m not saying that’s a bad thing, but you might realize the same thing after climbing a really tall mountain, and that’s what I’d much rather do.

Constant knee pain is miserable.

So how can it be the best thing that ever happened to you? Well, that’s conditional on two things: (1) You escape your knee pain (2) You become smarter about this complex machine you happen to be dragging around, tethered to your consciousness, that you call your body.

I feel that I scored big on (1) and (2) both, so I’m a pretty lucky guy.

What does (2) mean exactly? To me, it means that, during your recovery, you evolved skills in playing “medical detective” – figuring out, sometimes with creative thinking, cause and effect when something on your body starts hurting. You no longer give a fatalistic shrug and say, “I’m just getting old.” You painstakingly try to figure out what’s causing your pain, and you experiment with ways to get better.

Now here’s the anecdote that led to this post.

A month or so ago, I noticed occasional sharp pain in the side of my left knee when descending stairs. I have to confess, I did wonder if the chronic knee pain that I thought I had beaten had returned. Was it possible that I was wearing out the cartilage in the joint through strenuous biking?

But the pain was on the side of the knee. It wasn’t burning. And it came and went, but seemed to be getting worse.

Well, what could be going on, I wondered.

It just so turned out that a few weeks earlier, I had started a new job that features long hours and full days at my desk. And, one day at work, I happened to notice that I was crossing my ankles when I felt tension, in a way that was torquing my knee slightly.

Not much. And the knee never hurt when I was doing it.

Still, I consciously forced myself to stop. Whenever I saw my legs in that crossed-ankle position, I put my feet flat on the floor and relaxed.

And I think you know what's coming: the knee pain gradually went away. It’s gone now.

The point is that's exactly why knee pain – again, if you recover – can be a good thing. You become much more attuned to your body and can turn into a rather savvy medical detective.

Had I gone to a doctor about this side-of-knee pain, I guarantee he never would’ve figured out the reason.

And if I had never gone through that miserable ordeal with knee pain, I probably wouldn’t have either.

Saturday, April 28, 2018

TriAgain's Success Story (Part III)

Here’s is the third (and last) part of TriAgain’s story. If you skimmed the others, today's is the one to read closely! This is lessons learned. I find these quite interesting, so I’m just going to let him tell you what worked for him and either didn’t work or made his knee pain worse, and get out of the way!

The Bad

* Full-body-weight, leg-muscle strengthening exercises: too much load and frequency, so exceeded my envelope of function [i.e., capacity of the knee to handle the load]

* Anti-inflammatories: a short-term solution only and can cause long-term problems

* Stairs

* Knee taping

* Crouching, squatting, bending forward too much

* Icing: I had no swelling, but iced to relieve the pain. I was doing this a lot before the real chronic pain struck. I’ve since read that icing can cause CRPS

* Glucosamine (supplements): did nothing

* Iron (supplements): did nothing

* Body awareness: one thing triathlon can do is make you hyper-aware and paranoid of every little ache and pain in your body. You can focus on things too much, until they do become a problem, or become harder to solve.

The Good

* Becoming OCD about monitoring your knees, figuring out what makes them worse, what makes them better, and sticking to that, while gradually edging up your activity levels. For many, this will mean forget triathlon for the foreseeable future

* Walking

* Stretching

* TENS machine: my physio got me onto this and it was a Godsend for reducing the constant pain. I suspect it was working on the near-CRPS component of my pain and helping rewire neural pathways.

* Meditation: good for pain control

* Hoka shoes: they look ridiculous, but the difference in knee impact even when walking is noticeable and they help you get gentle knee movement without more damage

* Topical ointments (Lawang oil, emu oil, Tui cream): I think these work by relaxing the muscles/joint. There is also some evidence the menthol in these helps distract you from pain and has positive neuroplasticity impacts

* Stretching: as for above

* Hot baths/showers: as for above

* Fish oil: not sure about this one, but I continue to take it

* Losing the triathlon obsession: this took almost three years, but once I started getting some decent pain reduction, that became far more important than my need to race again. In fact, it made me realise how stupidly obsessed I’d become with the sport.

* PRP injections: I’m sure these helped, but were not the silver bullet

* Fly-fishing: the gentle walking with frequent stopping seemed to agree with my knees, as did being away from a desk, being in a nice outdoor environment, and wading in cool water

Weird things that worked

* Acupuncture: no idea why this works, but my Chinese medicine guy put the needles in my elbows as apparently that opens up the healing channels in the knees. I also meditate and relax a bit during these 30-45 minute sessions so maybe that is the thing?

* Neuroplasticity exercises: have a look at this and this. These indicate that you don’t have to just “manage” (i.e. live with) your pain, but can beat it my rewiring the CNS. I set up a little animation in Powerpoint which showed the pain centres in my brain shrinking, and it definitely had a positive effect.

* Backballs: these are self-massaging balls provided by my physio for your back which you lie on and they massage either side of the spine. I found there were some spots high up in my back which when massaged resulted in a noticeable reduction in knee pain. This could have been related to CRPS and changes in ganglia in the spine.

Saturday, April 7, 2018

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

Saturday, March 24, 2018

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