Why I Avoid E-mail "Consulting" About Knee Problems

If you e-mail me, seeking advice on what to do about your bad knees, you will receive a reply similar to this:

Thank you for your e-mail.

I’m sorry to hear of your knee pain. However, I’d rather discuss ideas that may help you on my blog or a knee forum (such as chondromalacia community), as opposed to trading e-mails privately.

This is for several reasons: (1) I’ve been getting a lot of e-mail to my private account from people who have problems with their knees. (2) As I’m not a doctor or physical therapist, I want to avoid any kind of consulting/advice-giving relationship that would suggest that kind of authority. (3) If you post your questions on a forum, or my blog, and allow me to respond there, others may chime in as well -- with ideas I hadn’t thought of, that may work even better for you.

Please don’t misconstrue this as a lack of sympathy; I’m sending this note out to all who have been contacting me privately.

All my best wishes!

I thought today I'd take a moment to explain, in a bit more detail than the message above contains, why I send out a more or less form reply to often desperate knee pain sufferers (who could have been me only four years ago).

First, there's that small matter of not being a doctor. :) And, even if I were one, I'd be a fool to offer advice to a patient I had never seen (well, other than the most general sort of advice, which is why a lot of doctor Q and A's on the Internet may seem unsatisfying -- though actually the doctor who declines to say "do this," "take this," and "do that" to a person he's never examined is just being professional).

So I've avoided getting into advice giving/consulting/"what are your thoughts on?" e-mail relationships. It's not that I think I don't have anything to say. I wrote Saving My Knees because I had so much to say -- and no one else on the bookshelves of my local Barnes & Noble had the same perspective (that of someone who beat knee pain) and the same message (much of the current thinking on how to deal with patellofemoral pain syndrome is simply bad), with research to back it up.

Still, it's my story. Parts of my story may help you find a way to heal your knees, while other parts may not.

Which leaves us with the compromise I decided on, some time ago, when creating this blog. No one wants to read a blog called "Saving My Knees" about some guy who healed his bad knees who writes only about how great his life is now. Most people who stumble upon this blog are hurting. They feel bereft, forsaken and abandoned by a succession of doctors and physical therapists. I know. I've been there. And they want advice on how to stop hurting -- if that's possible.

So I developed a blog that is supported mainly by three content legs -- like a tripod, if you will. They are: (1) Information taken from my book (I can share my findings with people who aren't interested in buying Saving My Knees, for whatever reason) (2) Commentary on new medical studies/news stories/whatever (to keep things fresh) and (3) My sort of awkward attempt to share, with readers who have specific problems, the kind of thinking that helped me heal (my "Comment Corner" feature).

The third leg ("Comment Corner") makes me the most uncomfortable, really. That's why I so often caution that whatever remarks I make are "things to consider and discuss with a qualified medical professional who is examining your knees." What makes me a bit more comfortable with Comment Corner is that it's an open conversation -- I'm not swapping private e-mails -- and anyone who chooses to opine in the Comments section that I'm an idiot for reasons x, y and z has that opportunity.

In other words, I offer my thoughts on a case study of someone's troubled knees. Then a reader can chime in with perhaps a great idea I have overlooked (example: someone recently suggested getting an MRI to a knee pain sufferer -- I know many orthopedists think MRIs are overdone, but my first axiom of healing is that you need to know what's wrong before you can devise a plan to get better).

Hope this clarifies things a bit! In the meantime, keep movin'! That's one piece of general advice I do feel unequivocally confident about, when it comes to beating chronic knee pain.

Zen and the Art of Knee Maintenance

A few weeks ago, cycling with the guys (they mostly are) on my Saturday morning ride, my Litespeed began attracting attention. And not in a good way.

Something was rattling. Something was rattling loud enough, in fact, that other cyclists were riding up alongside me, saying, "Hey, what's that noise your bike's making?"

Having a rattling bike is bad on a number of fronts: (1) It can be dangerous, to you and to other members of the peloton. (2) It marks you as an idiot who can't take proper care of his bike. (3) It's just, well, uncool.

The thing is, I had noticed the noise before. I just hadn't paid much attention to it. It was just a background irritant during the ride. So when I finally realized, "Man, I gotta fix this," the first issue I had to confront: I hadn't gathered much useful intelligence about the rattling (which tended to come and go).

Meaning: What made it start? What made it worse? Did it matter which gear I was in? Whether I was pedaling? Did I have to be pedaling with great force (such as going uphill)? Did it make any difference whether the road was smooth or rough?

Well, I wish I could say that after observing my bike closely during a two-hour-plus ride, I made a bunch of observations that led me to figure out what was causing the rattle. Indeed, I did start paying close attention to the sound, and exactly when I heard it -- but another rider helped me out by surmising my cassette was loose.

The "cassette" refers to the multiple sprockets on the rear wheel that allow you to change into easier and harder gears.

When I got back, I checked the cassette and he turned out to be correct. It had a little wiggle -- not much, but enough to make a rattling sound and also to cause roughness in shifting gears, which I had noticed too. So I tightened it up and, in a matter of seconds, had a noise-free bike again.

What this anecdote has to do with knee maintenance is, well, everything.

Because when you have bad knees -- and you're not getting better, and doctors are shrugging and giving you unhelpful diagnoses, and physical therapists aren't helping either -- I believe you need to stop outsourcing responsibility for your bad joints to other people. You need to become a first-class problem solver. And that starts with learning how to listen.

You need to listen to your knees, in a way you've never listened to them before. You need to listen hard to try to learn as much as you can about how your bad joints communicate -- what certain signals of pain or discomfort mean, what makes your knees feel better, what makes them feel worse.

This has to be a sustained, full-time, learning effort. No more, "Well, the doctor told me I could ride a bike five miles three times a week, so that's what I'm doing, even if my knees don't feel so hot afterwards."

When you start listening to your knees -- really listening to your knees -- I believe you put yourself in control, acquiring the knowledge you need to make good choices. You can be smarter about deciding whether an activity or exercise program should be intensified, continued, or even stopped.

So trying to fix grumbling knees or a noisy bike starts with the same valuable skill: learning how to listen.

My Personal Experience With Structuralism

I've had a few negative things to say about structuralism, the view that muscular imbalances and biomechanical flaws are the root causes of chronic pain.

That's not to say that structure never matters at all. But an obsession with it isn't justified by the scientific evidence.

I encountered structuralism before even knowing what it was. My first orthopedist, whom I sought out because of my burning knees, initially said my problem was related to mistracking kneecaps. (Later, during our discussion, he either backed away from this diagnosis or forgot it -- I can't tell which -- because he didn't mention badly tracking kneecaps again.)

What was curious, he offered this diagnosis even before he saw my X-rays (which showed normally seated kneecaps that didn't appear at all prone to mistracking). I suspect now that he diagnosed me reflexively. Structuralist thinking is prevalent when analyzing causes of knee pain, and "mistracking kneecap" is high on their list of explanations of what's wrong.

My physical therapist also seemed to be a structuralist. He would occasionally take a few minutes of our session to study my gait and alignment, trying to find evidence my leg mechanics were out of whack. He never found anything, that I could tell. Later I realized my case probably frustrated him because I didn't fit the structuralist model.

My mechanics were fine. I just had bad knees.

In a previous post on this blog, I summarized a study that found no relationship between patella mistracking and the knee pain of patellofemoral pain syndrome. This is how I explained the study's conclusions (my bold):

… if you just look at MRIs of how someone's patella tracks, you'll have no idea whether they have PFPS. Someone with a kneecap that tracks perfectly may have PFPS. Someone with no knee pain may have a patella that mistracks. The authors make the point more bluntly in a follow-up letter to the journal where the study was published: "Our findings add to the evidence that patellar mistracking is not a clinically significant factor for most individuals with patellofemoral joint pain."

Since then, I've found an essay well worth reading by Paul Ingraham (a massage therapist, very bright guy, and voracious reader of medical literature). He wrote a long piece subtitled, "The story of the obsession with crookedness in the physical therapies."

He says:

In my opinion, most biomechanical problems are much less important than is generally supposed … Not only are structural explanations for pain generally unsupported by any scientific evidence, the last 25 years of research results mostly undermines them.

Read the whole piece. Ingraham hauls out a bounty of evidence that includes: a 1984 study in Lancet showing that leg-length discrepancies don't contribute to back pain, a European Spine Journal study that abnormal neck curvatures aren't connected to neck pain, and a British Journal of Sports Medicine article that major muscle imbalances in elite Australian-rules football players aren't related to the number of injuries they suffer.

The takeaway here is that, if you have bad knees that aren't getting better, you need to take control of your future and educate yourself in lots of ways. That includes understanding the framework for analysis that your doctor is using (which may not make sense). So learn to spot structuralist thinking (strengthen your VMO!), and when you hear it, ask some hard questions.

Certainly the road to recovery is long. But first, you need to be on the right road.

Comment Corner: How Do You Heal Through Movement When You're Always in Pain?

I got this comment below (edited down for length) recently. Again, I'm not a doctor or physical therapist, so my observations are best thought of as "things to discuss with a medical professional who is actually examining your knees." My experience healing my own knees -- after doctors said they'd never get better -- is fully told in Saving My Knees, for those of you dropping by for the first time.

The history of my knee pain is quite similar to yours, I used to do a lot of mountain biking and I think one particularly intense holiday in the Alps is what really damaged my knees. I also have a desk job with long hours so have the same problem you faced of knees constantly being in a painful position.

I have tried every possible position for my legs and haven’t found one yet which is pain free. The only respite I could get was when I got home and lay in my bed … However now even this does not take away the pain completely …

So my main question is:

If I have got to the point where I am almost constantly in pain, is it still possible to perform the movement which is necessary to heal my cartilage?

Even if I just walk around for 10 minutes or so, this is likely to result in the pain increasing a bit and sometimes my knees becoming inflamed for a day or two. Do you think that while I am feeling pain the cartilage cannot heal, or do you think that movement can still have a healing effect despite the pain, as long as in theory the movement should not be putting too much stress on the knee joint?

When you had a setback and felt pain, did you only return to movement once the pain was gone, or did you sometimes feel pain when exercising? In your reading about the healing of cartilage is there something that leads you to believe it cannot heal while you are feeling pain?

Alex

Some good, tough questions here. Here are my reactions; other readers feel free to chime in below, in the comments section.

1. Have you seen a doctor?

I see no mention of one. Maybe you have and just omitted that detail. But devising a plan to heal begins with knowing what's wrong. A doctor may or may not be very helpful in understanding what's going on. Still, a good doctor will order tests, seeking clarity, if he's unsure what your exact problem is.

2. "I also have a desk job with long hours"

Uh oh. That can be a problem if sitting causes inflammation and pain. I finally quit my job because I concluded that I would never heal if I couldn't get on top of the inflammation that caused my knees to burn while sitting. If recovery from chronic knee pain is about taking lots of little steps forward, constant inflammation is (in my opinion) about taking lots of little steps backward.

Unfortunately, my doctors disagreed with me that sitting long hours at work was an impediment to my recovery. I had to quit my job -- and fling away the safety net of health insurance and a steady income -- to prove I was right. So you may face a grim decision: if you choose to leave work to try to heal, you may or may not succeed, and you'll probably get no support from your doctors.

3. "The only respite I could get was when I got home and lay in my bed"

Yup, this sounds familiar. Sometimes I lay on the floor on my back and draped my legs over the couch cushions. My knees liked my legs to be straight and elevated, and it sounds as if yours have the same preference.

4. So how can someone who's always in pain perform the movement needed for healing bad cartilage?

This is the nub of the matter. I've got many thoughts on this. Where to start? As I said before, you may want to check out my earlier post, "How Is It Possible to Exercise Without Pain When Pain Is All You Know?"

After that, I'd go here, where Doug Kelsey (a really smart physical therapist) describes some very non-stressful activities for osteoarthritis sufferers, such as pushing a skateboard back and forth while seated and even using a rocking chair.

You may be wondering how you can heal with motion that's this non-stressful. But don't be scared off by how easy these exercises appear to be. Healing bad knees is a long process, and it's better to start out doing something too easy (my opinion) than too hard. Remember too, you're trying to strengthen your knees, not your muscles. What's easy for your muscles may be just right for your knees.

If I were Alex, I'd start with some ridiculously easy movement exercises (such as those Kelsey outlines). I'd monitor my knees closely for say a week while trying to hold variables constant (i.e., don't walk a mile a day Monday through Wednesday, then four miles on Thursday, as that will screw up the experiment), then see where I'm at. If my knees feel the same or better, that's progress.

Why is it progress if they feel the same? I'd argue because you are moving more -- and more motion makes it easier to graduate to even more motion, and that's ultimately the path to healing.

Should you keep going if there's pain? This is where, if I were you, I'd prefer to be working with a really good physical therapist. Because, let's face it, pain isn't pain isn't pain. When you say you're in pain, what does that mean? It's like if you were to walk up to me in the park and say, "I just saw an animal." What kind of animal? A dog, cat, raccoon? A grizzly bear? My reaction will differ, depending on what kind it was.

If you suffer from typical chronic knee pain (aching and burning, but not too intense), you may not be able to get completely rid of it before starting on a movement program. During my recovery, did I get free of pain? Not exactly, but I did get as free of pain as I could.

I used pain sensations to guide me when to alter my activities (when to take an easy day, for example). While I tolerated some sensations of pain and discomfort, I was strict about avoiding swelling. That, from what I've read, is a clear sign that your joints are doing too much.

I've read nothing that says cartilage can't heal while someone is in pain. But it's only common sense to assume that if that pain is tied to cartilage destruction, you're probably moving a few steps back for each step forward. How can you tell whether or not it is? It's not easy -- cartilage has no nerve endings.

Many, many challenges! Here are the takeaways I'd say:

* I'd make sure I saw a doctor (or two) and got his opinion about what's going on. Also think about trying to work with a really good physical therapist.

* I'd start with a lot of really easy motion and be prepared to spend a lot of time making just a little progress. You're in a deep hole, it appears.

* You may not be able to get completely rid of the pain, but minimizing it is probably wise. But don't do that by giving up motion; rather tailor the motion to your diminished capabilities (don't walk 10 minutes because that's too much for you; spend 10 minutes swinging your legs gently in the swimming pool perhaps).

These are some of my thoughts. Again, you should see a medical professional who can examine your knees and discuss with that person what to do.

Anyone else have any other ideas?