Why You Know More Than Your Doctor

On its face, that seems crazy, that you could possibly know more than your doctor. After all, that person examining your knees completed a long and grueling education in his specialty, has probably probed hundreds of bad knees, and is most likely pretty smart to boot.

So how do you know more than this medical professional?

In one very important way: you know more about your bad knees because they belong to you, they’re attached to your body, and you’re getting signals from them 24 hours a day. A doctor, on the other hand, has to play 20 questions with you on that initial visit, trying to figure out what’s going on with a pair of knees he’s never laid eyes on before you walked into his clinic.

This has huge implications, especially for certain kinds of problems where the diagnosis tends to be elusive or uncertain or nebulous (e.g., you're told you have "patellofemoral pain syndrome") and the treatment protocol isn’t very good. Which brings me to my second story from South Florida about “Sara.” Last week I talked about how she fixed her knees. This week is about how she fixed her cough.

Sara had an occasional cough that wouldn’t go away. It got to the point where concerned friends would say, “You really need to do something about that.” But her doctor was stumped about what was causing it.

I don’t know what kind of tests she had done, if any. I do know that coughs can be frustrating to troubleshoot, after a few anxious months last summer and fall when our 2-year-old daughter developed a persistent night-time cough that was bad enough to interfere with her sleep. We eventually even had a chest X-ray done, just to rule out the really bad stuff. Shortly thereafter, the cough cleared up on its own.

Sara’s didn’t though. So she started thinking about what could be causing it. Could it be something in the South Florida environment? She often started coughing after she went outside at night. Hmmm.

Then she had a breakthrough: At night, after her husband got home from work and before they went out, she would spritz on a little perfume. Could it be? So she decided to try not putting on the perfume.

And guess what? The cough went away.

This is an interesting story for what it suggests about the limitations of doctors’ knowledge and the power of that of patients’. I’m guessing Sara could have seen a hundred doctors and none of them would’ve been lucky enough, even after skillful questioning, to uncover the perfume as the culprit for her cough. But when she became her own “medical detective,” she figured out the reason.

Similarly, in Saving My Knees, I told the story of a bout with adductor tendinitis. At the time I was riding my bike more than 100 miles a week. The doctor I saw immediately zeroed in on that. He prescribed various stretches to do before riding, but he never tried to answer the big question, “Why this tendinitis now when I had been riding the same long distances for years?”

Doing my own “medical detective” sleuthing, I found a reason: Not long before, I had moved my bike seat forward, just a couple of inches, to try to improve my sprinting muscles. What I didn’t realize was how much it changed the use of my leg muscles, and how the strains increased on certain tendons and muscle groups, amplified by some 30,000 turns of the pedals each week. I moved my seat back, and the tendinitis gradually disappeared.

So there you have it. You can make a big difference in how your knees feel (and heal).

Keep a knee journal and start figuring out what you need to do for your knees to improve them, and to lessen your pain. Don’t sit around and wait for a doctor to hand you the answer on a plate. Doctors are great, but when you’ve got a pair of bad knees that just grumble a lot, and you’ve already seen a bunch of doctors, it becomes clear there’s only so much they can do. After that, it’s up to you.

More Proof That the "Saving My Knees" Approach Works

This week and next: a couple of stories from South Florida, where I spent a week on vacation. One is obviously about healing bad knees; the other is about the same, though not so obviously. They both are from the same long conversation I had with an old boyhood friend and his wife, on a pleasant, kickback Sunday afternoon, in a West Palm Beach condo overlooking a broad lake.

His wife -- whom I'll call "Sara," not having gotten permission to blog our conversation :) -- shared the two stories that I found so interesting. The first was, to me, a further validation of the message in Saving My Knees.

Sara is now in her 50s and naturally athletic. After I was done relating my experience with bad knees (the short version), she told me hers.

She had always been a walker, someone who went for the occasional long stroll, I presume. Then one day she decided to lift the level of her fitness. So she took up running. I'm not sure how intensely she plunged into the activity, but she overdid it, and soon had a swollen knee for her efforts.

Some time elapsed, and the knee wasn't getting better. Frustrated, she went to a chiropractor. This is where the story could've taken a wrong turn. The chiropractor could've given her some fancy mumble-jumble about her hip axis being out of alignment with her flexed knee joint blah blah blah. But instead she got some remarkably simple yet useful advice: try easy cycling.

So she began riding a stationary bike, five times a week, about 30 minutes a session. And she healed in -- take a guess. A month? Two months? Four months?

Nope. One year.

This is the Saving My Knees approach in a nutshell. Find a joint-friendly, high-repetition, gentle activity that your knees tolerate well (cycling in this case). Be prepared to do it for a while (a whole year for Sara!). And I would add, from my own experience (having had worse knees), your exercising should gradually -- ever so gradually -- get more vigorous. Strengthen those bad knees!

As a coda to this story: I asked Sara if she still exercised on the stationary bike, thinking that her healing may have impressed her so much that she acquired a good lifelong habit. Nope. Too boring. Which I understand completely, as someone who dislikes the stationary bike too. It's better to be out and about in the open air on a bicycle with wheels that move.

Of course I know most visitors to this blog have worse knees than Sara did. Still, it's important to note generally what works. And Sara's is definitely a success story.

Next week, Pt. II: Why you know more than your doctor.

Comment Corner: Psoriatic Arthritis and a Bone Spur -- What to Do?

Before returning to breakdown and mending points, I wanted this week to share an interesting story from “Alane” that I fished out of the comment section. It’s a bit long, so I’ve edited it down a little. (Note: I added some bolding too, which I’ll return to later):

I will share my story as briefly as possible. At 31 I was diagnosed with Stage 3 breast cancer. The treatment I received: chemotherapy, a total hysterectomy at the age of 34 (which is not good for bone health), and daily doses of arimidex, an anti-cancer drug [with] side effects of increased joint pain.
I used to be a runner. I would run 5-9 miles, even though every time I ran it was painful. I had to give up running completely once my runs were leaving me unable to walk afterwards.
So, I took up walking long distances. It wasn't long before that form of exercise took its toll and I had to quit.
Over the years I have seen many doctors. Osteoarthritis is the agreed upon diagnosis. Many times I’ve been tested for Rheumatoid Arthritis, but the blood work has always been negative.
A few years ago I started cycling. I was immediately hooked. I signed myself and my husband up to ride in the Tour de Pink, which supports young women with breast cancer. I loved training for it and loved riding the three day, 220+ mile ride even more. My knees hurt, but ibuprofen, ice packs, and the infrequent cortisone injection helped.
I rode again the next year and the year after that. But each year has been more difficult. This year was the worst. My training was difficult and unenjoyable, even though I focused solely on keeping a high cadence to reduce the stress on my knee. Every ride left my knee swollen and painful.
My joint is so bad that I developed a bone spur under the side of my kneecap. I underwent a series of injections with cortisone plus a synthetic compound that is supposed to lubricate the joint. It didn't help.
Due to inflammation in other joints AND the fact that my knee will swell to monstrous proportions with no activity, my Rheumatologist again tested me for RA, with the same result: negative. She put me on a trial of steroids to see if they helped with the inflammation. They did, and I felt fabulous. This confirmed that I have Psoriatic Arthritis.
I have been taking it easy in the off season. I have my bike on a trainer and I work on spinning at a high cadence (around 90 RPMs). Unfortunately even spinning hurts: I am pretty sure this is due to the bone spur. My doctor doesn't want to do surgery because I’m only 43. Thankfully, he supports my cycling as it is "the best exercise for bad knees". His prescription: cycling at a high RPM, cortisone injections to relieve pain and reduce inflammation and swelling every three months, working with the Rheumatologist, and well, coping.
I am in some pain all the time. It makes me depressed and grumpy. I know there is no quick fix, but I refuse to be an inactive blob. I am wondering if I need to pursue surgery just to remove the bone spur on my kneecap. If you have any experience or insight on this, I would love to hear it.

First, the standard disclaimer -- I’m not a doctor or physical therapist, though I managed to heal my own bad knees against the odds -- so everything below should be considered, “Things to think about and discuss with a medical professional.”

After reading Alane’s story, my first reaction was: Wow. Alane, I think you’ve earned the right to be a little grumpy. Breast cancer at 31, then bad knees -- those are two big battles to try to overcome, and at a relatively young age.

Now for a few thoughts, starting with two bad things I want to get out of the way:

When I had chronic knee pain, I especially feared two things. One was having my knee change structurally, in a way that impeded healing. I wanted to save my knees before bone spurs developed, as they can restrict range of motion and complicate efforts to get better. The Australian study that I’m fond of citing, that showed 37% of subjects had cartilage defects improve naturally in their knees over two years, also found the worst prospects for joints that had bone spurs.

Second, I too was worried about possibly having rheumatoid arthritis. I was convinced I could heal my knees, given enough time, as long as some Crazy Switch hadn’t been somehow flipped on in my body, causing it to attack itself (which is what happens with an auto-immune disorder). Luckily, I didn’t have RA or any other auto-immune disorder, though I still suspect to this day that there was some kind of systemic problem, because of the pain in multiple joints that I suffered.

Okay, that’s the gloomy stuff. What’s the good news?

Well, for starters, are you sure you’ve got psoriatic arthritis? Getting a diagnosis, even a bleak one, can be a source of comfort. “Phew! At least I know what I have!” But do you really? Might it be worth getting a second opinion? Though if your joint has “monstrous” swelling with absolutely no activity, that does suggest something like an auto-immune problem.

Also, bone spurs aren’t exactly the death sentence I once feared! Distance runners routinely develop protective bone spurs, it’s been found. And bone spurs are actually covered with fibrocartilage -- a neat little adaptation our bodies make -- so they’re not as destructive as I previously thought. The big problem, I think, is when they restrict the comfortable range of motion you need for high-repetition exercises.

And more: You may be able to make some gains simply by moderating your activity level. You sound like a “warrior” type to me. That’s why I bolded certain phrases and sentences in your story, so you could take a closer look at yourself, in your own words. I strongly believe that exercising through knee pain is a no-no.

You seem like a fighter, a competitor ... which can be hard on damaged knees. Think about going Zen. Go backward to go forward. Ease up. Consider trying some very easy cycling at high rpms.

And finally: Have you tried swimming or pool exercises? I don’t know why, but something about your story screams out “pool therapy” to me. Give it a try?

As for having the knee spur removed, that’s a tough call. Any readers want to share knee spur stories? I have no experience there (I think I have a few knee spurs, but very small). So I’d discuss with a doctor, of course, and weigh how much the spur interferes with the range of motion of your knees and causes discomfort.

Good luck! Readers, please weigh in below with your own thoughts!

Of Breakdown Points and Discontinuities in Healing, Part I

Now for something completely different.

During the many months when I had no job, when my sole focus was on fixing a pair of bad knees -- could it really be done? -- I did a lot of thinking. Not surprisingly, much of it was about damaged knees. My internal dialogues became more interesting when I realized my personal experiment was succeeding -- I was getting better -- even after a doctor (and not any doctor, but the best of the four I had seen) told me my knees were a lost cause.

At that point I could stand back (in a metaphorical sense) and survey the long timeline of my recovery. And one thing that struck me as curious was how incredibly lumpy it was, even though I was steadfast, meticulous, careful, diligent.

There were ups. And downs. All over the place.

So I began pondering more deeply what was going on with wear-and-tear injuries, and the long-term healing process, and I had the following thoughts:

STRUCTURAL BREAKDOWN POINTS

Say there's an old country bridge over a river with a five-ton weight limit, and the limit is absolutely, precisely real. And say a dedication ceremony for a park on the river's north bank is held on the bridge, because of the astonishing scenic view from there. Dignitaries and various paraphernalia are packed onto the structure.

Soon the bridge is supporting 9,999 pounds, but no one appears worried. Indeed, it seems stable. Then someone remembers a two-pound cake he forgot and rushes off, then returns with it.

And the bridge collapses.

Or consider a ceramic cup that's held x inches off the ground. If you drop it, you've got a dirty cup -- but nothing worse. Hold the same cup x + 4 inches off the ground, drop it, and you've got pieces of a cup.

So there's a point at which an object or structure breaks. When it does, it undergoes a significant change of state -- in the case of the cup, from "whole" to "pieces."

What's happening at the pre-breakdown point? What's the bridge like, a few pounds shy of its weight limit, or what's the condition of the cup on impact when dropped from x inches, not x + 4? Outwardly, either appears fine. However, both may be very stressed internally. Further, the unseen stresses may contribute to an overall weakening of either (next time you drop the cup at x inches, it may break instead of just getting dirty).

SO WHAT DOES ALL THIS MEAN?

What I think is a fascinating paradox lies at the heart of these observations:

(1) Small factors can have huge consequences (a two-pound cake causes a bridge to collapse).

(2) Small factors don't really have huge consequences (that two-pound cake becomes a problem only if you've unwisely loaded the bridge with 9,999 pounds of other stuff).

Our knees are structures, of a biological sort (the distinction is important, because they're not brittle, in the same way a concrete bridge is, and they have a capacity for self-repair, but I still think the analogy broadly holds).

If you have a wear-and-tear or overuse injury that results in knee pain (as opposed to having knee pain from a sudden, traumatic accident), there is probably a crossover point where your joint goes from being extremely stressed with no pain to being extremely stressed with pain. It could be a slender crossover point, that is covered quickly, leaving you suddenly wondering, "Why do my knees hurt today? What did I do wrong? What should I do now?"

EARLY DELUSIONS WITH KNEE PAIN

Okay, here's the point of these musings:

To me the idea of breakdown points, and the central paradox of them (outlined above), suggests that many of us suffer two delusions early on with knee pain.

(1) Delusion #1: "I must be in pain because of that hike (or whatever) yesterday, so I'll just take it easy for a week or two, and I'll feel better."

So you blame a proximate cause for the breakdown. But that's like saying the two-pound cake brought down the bridge. It did, but it really didn't when you look at the larger picture.

Based on this delusion, you reason that a week or two will suffice to fix a sore knee. This is a short-term fix to a long-term problem. It usually doesn't work.

The problem is, you've deluded yourself into thinking the problem is smaller than it is. Why? Because, during the preceding months, when your joint was being quietly stressed and damaged in small ways, you still hadn't hit that breakdown point and crossed the pain threshhold, so you never realized how close to trouble you were.

(2) Delusion #2: If you're lucky enough that your knees do feel better in a few weeks, you think, "Phew! They healed. Glad that's over!"

But what if you just crossed that threshhold from pain to no pain in a small way, and the truth is the accumulated defects and stresses in the joints are just waiting to cause more problems? Two months later, you feel pain and say, "Darn, my knees again."

But it's not again. It's the same problem as before. Instead of trying to fix it with a long-term plan, you hoped it would go away. And now it's back.

Part II (in a few weeks -- I'm off to Florida on vacation next week ;)) will look at the mirror image of this concept. If there are such things as breakdown points with our knees, might there also be "mending points"? If so, what implication does that have for the healing process?