Saturday, May 9, 2015

The Fine Art of Playing Medical Detective

If nothing else, I hope one message in my book is crystal clear: You have to get involved in fixing your knees.

Why? Here are three reasons: (1) Your particular problem has a particular solution; what worked perfectly for me (or someone else) probably won’t be exactly what you need. (2) A doctor or other medical professional trying to advise you will never gain as complete an understanding of your symptoms as you have, even if he spent five hours with you. You ultimately know better what you can and can’t do. (3) You need to be able to monitor and adjust your rehabilitation program in real time and your orthopedic doctor won’t be on call, 24/7, for every small question you have.

Part of getting more involved in fixing your knees means honing your skills at playing medical detective. Think of your evolving symptoms as a nonstop “Who dunnit?” (or “What dunnit?” may be more apt). If you want to avoid pain/flare-ups of symptoms, avoid doing the thing that triggers them. (Note: Believe me, I realize sorting out cause and effect isn’t always easy, especially when there are renegade inflammatory processes in the mix.)

The good thing is, once you develop “medical detective” skills, they’ll come in handy. In my case, they helped me solve (and heal) a couple of mysterious injuries in the past few years.

The Case of the Sore Index Finger:

This was a strange injury that kind of crept up on me. Quite simply, I began noticing my left index finger was sore, in the joint nearest the fingernail. Whenever I I pressed down on something with my fingertip, the joint would hurt.

What the heck? Was I just getting old, I wondered. Maybe starting to develop some arthritis?

But then I started thinking. “Hmm. Why is this joint -- and only this joint -- sore?” My right index finger was fine. Then I discovered something: The joint was being strangled twice a day. And I was responsible!

What I figured out was that, for my twice-a-day flossing, I was wrapping one end of the string around -- you guessed it -- the last joint of my index finger. I didn’t notice any pain or discomfort while flossing, but the soreness was evident later.

After realizing this, I started wrapping the floss away from the joint. Today my index finger is perfectly fine again.

The Case of the Sore Thumb

More recently, I had a problem with soreness around the base of my thumb joint. It was a nagging minor pain. As with the index finger, I couldn’t recall precisely when the pain began, or an injury that may have precipitated it.

Again I wondered: What’s going on? Is this age-related?

Well, I knew age hadn’t been the issue with my index finger, so once more, I began paying close attention to the unnatural forces on that thumb. And I found one -- but it was so minor I couldn’t believe it was the culprit.

I wear a backpack to work -- except usually it’s not on my back. I sling it over my right shoulder. And I caught myself, more than once, absent-mindedly pressing my thumb against the strap, stretching the digit back.

That can’t be what’s to blame, I thought. How can a little thing like that cause a problem? Still, I made myself stop pressing my thumb against that strap when I walked with my backpack.

And the pain went away.

The funny thing is, had I gone to a doctor for either of these problems, I probably would not have gotten a helpful analysis or solution. It’s not his fault; I wasn’t doing anything obvious that was causing either of these two joints to be sore. Further, a doctor might have put me in that “old guy” box (“You’re on the wrong side of 50; it’s just some inflammation that may eventually become arthritis; if it really bothers you, I can write a prescription for some pills.”)

But the cool thing is, I managed to figure it out by myself. And I got better. I’ll take that outcome any time.

Update: Oops, I see that this post is open to misinterpretation. My fault. To be clear: I don’t mean to imply that you don’t need doctors or physical therapists at all. I don’t mean to imply that you’re your own best doctor (in the end, you may be, but please don’t start out with that assumption).

I do believe that you need to get involved in helping solve the mystery of your knee pain. In other words, don’t go to a professional when you have chronic, hard-to-treat pain and expect to be handed a perfect solution on a silver platter. This goes to the heart of one of my beefs with people today: I think they look too often to the quick, easy, other-provided solution: a pill, a surgical operation, 35 leg lifts at dawn every other day, etc.

Here is why I would always start my knee pain journey with doctors and physical therapists: (1) They’re usually pretty smart people and good, careful thinkers. (2) They have extensive training and a broad understanding of a human body’s biomechanics that I’m betting you don’t have. (3) They have experience treating bad knees just like yours. (4) They (doctors anyway) have access to diagnostic equipment that can help shed light on what’s going on with your bad knee(s).

The first step to fixing a bad knee is figuring out what’s wrong with it!

Ah, but what if they don’t find anything? This is where things get more complex. If your doctor shrugs and basically says, “You’re getting old and your knees are just wearing out” -- well, that’s not too helpful. So here are my main complaints about many doctors and physical therapists: (1) They’re too fixated (physical therapists especially) on this idea that if your knees hurt, the underlying cause must be an imbalance/crookedness. (2) They’re too pessimistic (doctors) about the prospects of your knees getting better. (3) The exercise routines they prescribe (physical therapists) are usually too hard because they focus on muscles when they need to focus on joints. (4) They don’t work hard enough to help you craft a sensible, go-slow program to improve.

But -- and here comes a huge but -- this isn’t always true. Celebrate when you find a good physical therapist (I believe they can save you; a doctor’s usefulness tends to be limited after he shrugs and says “I can’t find anything wrong, so just try not to aggravate the joint.") A smart, patient, dedicated physical therapist is worth his or her weight in gold. I said that in the book, because I really believe it’s true. Just be careful: A bad physical therapist can mess up your knees really, really fast.

Finally: a nod to Doug Kelsey who is hands down the best physical therapist I know of (disclosure: I base that solely on his writings; I’ve never been a patient of his). He wrote a great book here. If you want good insight into chronic knee pain and illustrated exercises that will help you get better, check it out.

39 comments:

  1. If "you ultimately know better what you can and can’t do", something that I've definitely come to believe, what do you think physios and doctors can offer, if anything, in the recovery process?

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  2. WE are our best doctors! Richard, you successfully healed your knees; would you say your knees are as "good" as they were pre knee pain? My knees have improved significantly but I often wonder if they will ever feel the way they used to feel - before the injury, before the 2 years of pain. I would love to hear your insight. Thanks again for your continued posts, I look forward to reading more.

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  3. I don't totally agree. I understand what you mean about knowing your body best, and that the dr won't be with you 24/7 to examine every small nagging pain. But.... Sometimes, you can also do a great deal of harm thinking you are doing the right thing. Sometimes, that damage is not reversible. It helps to listen to your body AND listen to your doctor. Trouble is, it is hard to find a doctor that will listen to you and tailor the treatment to your needs and your needs only. I'm lucky I found one PT who really does that. She does the hydro sessions and each of the patients has their own issues and own abilities. Something that works for me won't work for Mary, and some things that John can do I won't even dream of trying. She gives us the exercises, but she also knows who can or can't do that exercise and will adapt it. She knows who can push themselves and who needs to take it easy. She gave me some exercises that didn't agree with me, I told her she tried something else that worked. Somehow, this is what I'm doing too, a lot of trial and error to find what helps and what doesn't. Some of the exercises have been really helpful, and I wouldn't have thought of them

    In between visits and hydro sessions, I listen to my body, and after 18 months I know what works and what doesn't. But I don't think I would have reached that point without that PT.

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    1. Please everyone, see my update above to this post. I probably wrote this in an unclear way. I'm not trying to say there's nothing doctors and physical therapists offer or you should immediately try to be your own doctor, and you know best. As I say in the book, a really good physical therapist is worth his/her weight in gold. The problem is, I think many of them don't believe the right things yet. But some clearly do and are very, very good.

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    2. Richard, why do you justify? We all, more or less, agree about the fact that physical therapy has not helped, including Doug Kelsey's approach and his book.

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    3. Thanks Richard for the clarification. It is frustrating when you have to go from one doctor to another, and you know deep down that they are not the right ones. But when you find the one, it is fantastic.

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    4. I’m not trying to justify bad doctors or physical therapists. Look, in the end you may very well turn out to be your own best doctor. But I think it’s dangerous to start out with that premise. I get nervous when people say things like (upthread), “What do you think physios and doctors can offer, if anything, in the recovery process?” I picture someone who has knee pain and hasn’t yet seen a doctor reading this post and thinking, “Doctors and physical therapists -- waste of time -- no need to bother. I can figure it all out myself!”

      Well, if a blood test, or X-ray, or careful physical exam, turns up something complex that is causing your pain, that’s something the vast majority of people wouldn’t figure out themselves. The idea behind this post was to urge people to get more involved because traditionally we go to professionals and seek answers that we blindly obey. I don’t think that’s a very smart model. I think the ideal though is to find that good doctor or physical therapist and, at the same time, for you to get much more involved in the effort to heal your knee pain. If you never find that good doctor or therapist, then you may have to fly solo.

      But ideally, the recovery would be a collaboration of complementary knowledge -- for instance you do ultimately know better what you can and can’t do. But a good PT can advise you on a range of exercises that will help improve your knees. I like to jokingly refer to myself as the best patient Doug Kelsey never had. ;)

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  4. A follow-up visit with my sport med doctor yesterday brought up something I hadn't considered about my knee pain and wanted to see if any readers have related experiences or knowledge.
    My doctor seems certain that my knee pain is neuropathic, and not physical pain. That is, my nerves are damaged and firing incorrectly, causing pain symptoms even when when I'm not actually causing further injury to my knees.
    I had described how my knees often burned, how there is never any visible inflammation, and how my knee function very quickly declined since my last visit to see him and get my MRI results. He described my pain as an abnormal pain pattern and that stress and worrying about my knees, as well as decreasing my activity, continues to compound the problem. He is sure my pain is not due to continued physical damage and that I need to break out of the pain cycle.
    He has prescribed a nerve pain medication called Gabapentin, which sounds like fairly serious stuff that affects your neurotransmitters. I don't like taking any medications and am pretty hesitant about this one, but you know, desperate times.. It is meant to control pain so that I can resume easy activities that were still possible 2 months ago, like easy cycling.
    In a way, neuropathic pain seems like a possible explanation of my symptoms, since I can see no physical reason why my knee function suddenly declined so severely after learning my MRI results. It is really strange though to think that it is all due to my nerves and brain (i.e. in my head). My concern is that if I resume a higher level of activity that would normally cause me pain without the medication, what if I am doing more damage?
    Because I've had little success in regaining any function over the past two months by being hyperaware and very careful about my knees, maybe it's time to try something new? If anyone has any thoughts on neuropathic pain, I'd love to hear it. Thanks!

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    1. I took Gabapentin for facial neuralgia. The benefits outweighed the side effects: I could speak, eat, brush my teeth without feeling like I was being electrocuted every 20 seconds. The neuralgia had been brought up by stress, and believe me, the pain was very real, and not 'all in my head!'. Thankfully, a pain specialist made the right diagnosis where dentists wanted to root canal most of my molars.
      It's a similar process for knee pain, and I believe there are psychosomatic triggers at play for most long term, chronic pains

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  5. RunnerD

    Yes, I had exactly the same diagnosis - nerve pain which was at a level of a precursor to CRPS, and was put on some pretty awful nerve pain medication, which worked a bit, but I could not take the high doses they were moving me toward without feeling very spaced out.

    Like you, my pain was burning on the back of the kneecaps, but also joint stiffness and aching deep in the knee. Never any swelling, but sometimes cold/hot kneecaps and discolouration (blue/purple with red blotches). But I've had that blue/purple discolouration when cold since I was a kid.

    And stress def makes it worse.

    However, in my case I do think there was both pain from cartilage damage, and pain from nerve involvement (i.e. the nerves sending out pain signals in excess of what the damage would suggest - my GP explained it as changes in the spine ganglia and the brain).

    Like you, as well as the nerve medication, the advice was to slowly increase what I did on my knees, but every time I tried, I went backwards fast.

    I weaned myself off the nerve pain tablets (Lyrica = Pregabalin), and have been slowly increasing what I do with my knees (walk more uphill, light deadlifts, kettlebell lifts from each side). This seems to be going OK (having more good days now) but certainly not out of the woods yet.

    At times, I've wondered if I should just go and smash out a run or ride and see what happens, but I'm resisting the temptation, because going backwards is so soul destroying, and I don't want to wreck the gains made in the past few months.

    I'd love to have another MRI so see how the damage compares to what it said in 2012, but my GP has said why bother, you've done far less than in the past so it should show an improvement. Bit I do wonder if an MRI that said my knees were much better physically would help me overcome what might just be a nerve issue now. At present I really don't know how much of the pain and stiffness is cartilage damage and how much is nerves.

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  6. TriAgain, are you "SuspectDevice" on "knee guru"?

    Yes, burning under patella is a nerve pain. Nerve medications should calm that pain, at least for the short period.
    I have two different knees!
    Left one is the one without burning pain, but under load it hurts (squats, stairs...)
    That is, I would say, cartilage defect.
    Right one is the one with burning pain, but tolerate squats and stairs much better.

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  7. Interesting, thanks for the replies. I guess I'll have to trust my doc for now when he says it's neuropathic pain and not physical damage that needs to be addressed. It doesn't sound like there's a sure way to judge what is causing the pain.
    Deloupy, how long did you take the Gabapentin for? How did you judge when to stop?
    TriAgain, how much function did you gain back when you were on the Pregabalin? My doc chose Gabapentin because he thought weight gain was less of an issue with it compared to Pregabalin, and because of insurance coverage. Perhaps Gabapentin is worth a try? Glad to hear your knees have been improving lately though.
    All I know right now is that I popped some pills, and the next day I hopped on my bike, pedaled around town, and it was GLORIOUS. I haven't felt that happy in a long time.

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    1. runnerD, what I mostly got from Pregabalin was less pain, not more function. I noticed a fair reduction in pain especially in the first few days after starting it, or when the Drs increased the dose. But I never really pushed for more function, as whenever I did things seemed to get worse. And compared to what other describe, my function is not too bad (e.g. I can walk without severe pain) - but being a stubborn (ex) triathlete, I got good at igoring pain.
      I did not get a weight gain problem, but then again have been more careful about my food intake now I do far less exercise.
      I have an aversion to taking prescription tablets, but perhaps I should start the Lyrica again?
      I'm very interested in your result runnerD. You seem to be saying the Gabapentin gave you very rapid pain relief such that you hopped back on a bike. What type of pain do you have? Obviously burning under the kneecaps, but do your knees also feel stiff and achy - sort of like you became 90 years olf overnight?

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    2. TriAgain, the Gabapentin seemed to kick in right away, in that I don't have burning knees anymore. I still get sharp pain if I put too much weight on my knees. Easy cycling seems to be doable again, but does hurt if I try to pedal too hard. I'll have to wait and see how my level of function progresses. So far, it hasn't gotten worse with increased knee activity. I'm still on a lower dose and will be increasing it in a week or so.
      My knees don't generally feel stiff - usually the opposite actually. The precursor to pain is usually a feeling of looseness and instability in my knee joints as I'm walking or cycling, and if I continue, I start to feel pain. Also not generally an achy pain, it's usually sharp pain that stops me from using my knees. I do feel 90 years old though, on account of having to hobble downhill and down stairs..

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    3. Interesting runnerD. Sounds very similar to my experience with Lyrica.

      I used to get that sharp pain on and off for years right behind my kneecaps and before my meniscus surgery. After surgery it first morphed into bilateral achy medial pain, and then a constant burning pain behind the kneecaps plus deeper aching and stiffness.

      Before my 3 years of Hell started, I remember my brother-in-law always wanted to go rock fishing with him, but I resisted it as I'd get that sharp kneecap pain walking down the rocks. Yet I could belt out a 2km/120km/20km triathlon over 6 hours with no knee pain at all. Bizarre!

      Now, after 3 years of more knee friendly activity I rarely get the sharp kneecap pain, but have the burning/achy/stiff thing going on, which leads me to believe my kneecap cartilage has improved, but I have lingering nerve pain. However I do believe it is slowly improving, and my recent foray into some knee loading work (light deadlifts, faster walking up hills etc) might finally be convincing my nerves, ganglion and brain that my knee damage is not so bad.

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    4. I took Gabapentin for about 10 months, but the effect was very quick: I was in less pain by the end of the first week, and only got the odd 'taser' after a few weeks. But to prevent it from returning, I had to take it for several months. Towards the end, we decreased the doses and eventually I was able to wean myself off it.

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    5. So deloupy, are you cured now as a result of taking Gabapentin?

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    6. I would say 90%. When I'm very stressed, I clenched my teeth at night and get the odd pain the next day, but never as bad as it was

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    7. I'm wondering if a lot of long-term chronic knee pain is actually due to nerve involvement (a CRPS-type issue) once the initial cartilage or other physical damage has more or less healed.

      I talked to an old work colleague at the gym this week who said he'd ended up with CRPS-like problems for years in both knees after a motor bike accident which caused a fairly simple fracture of just his left knee. Like me, and many who post on here, he got on the medical / PT roundabout of aggressive muscle strengthening, which just made it worse. I want to talk with him further, but got the impression he avoided medication and solved the problem by what sounded to me like doing exercise/movements 'within his envelope of function'.

      All this makes me wonder if Richard and others have found the right solution, but for (at least partially) the wrong reason. It may not be the cartilage - or just the cartilage - that is responding to light regular movement, but also the nerve problem. One of the cures for CRPS is gradually increasing your exercise regime, re-training the nervous system to recognise that this type of movement is not actually damaging your body.

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  8. Yes, the above title is open to various interpretations of backhandedness.

    My point was (is), that if you have bad cartilage and are feeling stonewalled, discarded etc. by the medical industrial complex, it is my opinion that you would be better off getting a degree in "thinkology," and applying it to your ailing cartilage, as opposed to other extreme measures. Yes, consulting the pros is a must... Unfortunately, the book about the "cons" of pros, has yet to be written, so thread lightly and bring your salt shaker.

    I am not a doctor, nor a medical detective (whatever that is) and I don't play either on TV, but I am saving my knees. Sadly, I have a sense that there are a lot of egos out there (and in here), with all sort$ of itineraries with respect to things cartilagy. I don't pretend to have any answers for anyone but me and I do not intend to post here any longer.

    I only gave a small sample of my experience, in order to offer a glimpse into my particular circumstances and more importantly, methodology. Which is different for everybody healing their wonky cartilage knees.

    As always, I wish everyone good luck healing their knees and in choosing what to believe and what to pursue, wisely. Racer-X

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  9. Hi, I am new to this blog. And new to the chronic knee pain situation. Perhaps the hardest thing I've had to go through in life. I've been a marathon runner for 23 years and triathlete. I'm 45 years old now and have never had a knee injury. About a year ago, only during runs I started feeling pain in my hip and lateral knee. It felt like a ITB issue. About six months ago, my knee started hurting during the day as well as while running. I drastically reduced my mileage, added in some foam rolling, or stretching. i've been on sabbatical the last six months and do a lot of sitting and driving, which seems to aggravate it especially the driving. Last month, I was in Europe and walked for about 4 to 10 hours a day without pain. This was very encouraging. Toward the end of the trip, I climbed two 500 step towers on back to back days, after the second tower my knee started hurting. When I returned home, it started feeling better and I went for a bike ride. My knee started hurting at 18 miles and hurt a lot by the time I got home at 25 miles. It hurt for the next two days. That's what got me into see the doctor a GP. She ordered X-rays, which came out negative. I have an appointment next week with an osteopath.

    What really got me worried is the doc revealed crepitus in my knee. I have never noticed it before. It sounds crunchy and grating. I'm afraid I'm grinding down cartilage. It's got me freaked out. I've been spending most of the day online searching for ifo, causes and solutions and driving myself crazy. This last week, I've done anything I think could help - supplements, foam rolling, stretches, quad exercises, low impact exercise like walking. I have discomfort, but no pain during a one mile walk. My knee was feeling good this week.myesterday I spent an hour mowing the lawn and I raised my bike seat and went on an easy 10 mile bike ride. Just some minor discomfort.. Also, my leg didn't do the crunchy crepitus while cycling. It felt soooo good to cycle. Yesterday, My leg felt good. So I decided to do the same thing, an hour mowing and 10 mile ride. 13min into a low resistance ride, I felt the first signs of pain on the medial side. It spread, but didn't get too bad. Today my knee is achy and I'm beating myself up for going on that ride.

    Is it ok to walk on a minorly achy knee. Also, is the crepitus a really bad sign? Should I try to avoid activity if it causes crunchiness? I'm flying out to the Grand Canyon today with my girlfriend. I'm really worried about the walking and hills. She has been looking forward to this for months- it's my birthday present to her. She has read dozens of tour books and bought new gear. The idea of holding her back and limiting the trip due to physical condition is really really hard on me. My whole life I've been an endurance athlete and have slowed down for others. My self image is changing from an injured athlete to a pre-arthritic middle age man.

    I'm really worried about causing more damage. Is crunchy crepitus a reason to stop activity? And how far into the discomfort/pain zone do people go while active?

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    1. I am also new here as a commenter (although I have already read the whole blog). From what I have heard from most medics, crepitus isn't a direct sign of anything. The sign is the pain you are feeling, not the crepitus. You may have some mild cartilage injury... or may not. It is hard to tell, as pain and damage do not correlate perfectly. And for how far you should go in the pain zone, I would say zero. Try never to be in the pain zone. Maybe I'm traumatized because of my knees, but I would avoid any thing that gives me articular pain.

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    2. Roger, first let me say I share your frustration as an ex-triathlete who is 3 years into this journey. This sentence "My self image is changing from an injured athlete to a pre-arthritic middle age man" struck a chord with me.

      I agree with Luiz. Before my chronic bilateral knee-pain started, I had mild crepitus but it was never a problem. However, when the chronic pain started, the noises morphed from a little crunching to the type of wet ripping sound Richard describes in his book.

      And just like you, I can to intermittent walk/standing for hours, sometimes over very rough terrain while fishing (i.e. walking over basket-ball size slippery rocks, sometimes stumbling) with no big increase in pain. But try to run for 30 secs or cycle for a few mins and I'm in big trouble within a few hours. See my comments above on CRPS as to why this might be the case.

      I walk with minor or even quite achy/burny knees - mostly 20-30min walks on flat ground 1-2x/day. It does not seem to make things worse & I believe is the type of 'gentle motion' needed to promote healing. But as soon as my brain perceives a knee movement to be something akin to the sort of triathlon training I used to do, things go backwards (which again makes me think nerves & CRPS type situation)

      I'm not sure how your knees would react to Grand Canyon walking. If you can walk for 4-10hrs without pain, it sounds like you might be OK. But it may depend on the steepness of the terrain. Lots of downhill is a problem for me (uphill not so much). As Luis says, avoid things that definitely make the pain worse.

      All the best with it.

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    3. Oho, we have new members!
      A lot of people have completely asymptomatic patellar crepitus. I use to test other people's knees, and guess what, every other has crepitus in the knee. (my father, my friends...). Some of them much worse then I have. But but they have no pain at all, especially chronic and constant like I have.

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  10. So, I saw a sports oseopath - with mixed feelings. The first question he asked me "What is your biggest concern that I will tell you?". I said that I wouldn't be able to run again and its been such a big part of my entire life. Then I said, having an active lifestyle is probably more important. He gently poked and moved my knees around. He then said my knees are sturdy and I'll be able to run again. He said he recommended PT for strengthening and flexibility. Especially strengthening the quads and hips. I've read so much negative stuff on this blog and Kelsey on that approach that I recoiled. I asked if low resistance / high repetition exercise like swimming or water jogging was good and he perked up and said yes - that joints love motion. He also said that open foot exercises like the leg extension machine is bad, but stationary foot exercised like squats are good. He didn't seem too concerned about my crepitus and said he probably has some in his knees.

    Although my Xrays were deemed negative by the radiologist, the osteopath said he saw minor arthritis in some spots - but that I had joint space. This was a big hit to me. Yet he said many 45 year olds would show minor spots of arthritis if they had Xrays done. He said I likely had some minor arthritic spots on my good left knee. Overall, he didn't seem too concerned and thought some PT would get me back running. He seemed to talk like this just kicked up a few weeks ago and just hurts when I run, yet it has been going on for 8 months now and hurts when I walk.

    Another comment he made was that he is not a big proponent of Nsaids and the big danger to the knee is when is swells. Yet, can't inflammation occur without swelling? And wouldn't that be harmful to the knee?

    So now, I'm debating going the PT route. Perhaps I can find a PT that leans toward the low resistance/high rep strategy. As of now, the only aerobic exercise I can do without pain that gets my heart rate up is water jogging. I hope water jogging is good for the joints, because I plan on that being the basis of my rehab. Also, anyone know if "a few minor spots of arthritis" is normal in 45 year olds? The osteopath acted like it was, yet it really alarmed me.

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  11. Roger, what the osteopath said pretty much confirms my theory after 3 years on the medical roundabout. Mostly, advice given by medicos about knee pain which has no blindingly obvious cause is nothing better than a moderately educated guess. There are some standard treatments they trot out (PT to strengthen your quads being the biggie), but mostly they are winging it. Some patients get lucky and it works, but my guess is for people with longer-term, constant, chronic knee pain it will not, and may make things worse.

    I got suspicious when I suggested something to my medicos (e.g. like your swimming or water jogging idea) and they immediately perked up and said "yes, good idea". It left me thinking if it is such a good idea, why didn't you suggest it - you're supposed to be the bloody expert? Gradually I realised (just like R-X has said many times on here), you need to educate yourself, try things, see what helps and what doesn't. And it can be the most frustrating process.

    I'm not at all surprised a 45yo has minor spots of arthritis (esp one who does marathon and triathlon), I'd guess almost all 45yo's do. But generally minor spots should not cause long-term chronic pain. I was diagnosed with fairly high grade chondomalacia patella (= kneecap arthritis) years before my chronic pain started, and it only ever gave me grief for a few days or so.

    Like me, it seems something else is going on - possibly the 'loss of homeostasis' in the knees which Kelsey talks about. Re-reading your original post however, it seems your knee does settle quickly when you stop doing aggravating things, and it is only in one knee - that sounds like good news. You have caught things early.. If it were me, knowing what I now know, I'd try the PT but at the first sign it is making things worse, stop it and go to more conservative activity (like easy walking). Swimming might work, as may water running, though water running did not work for me. Pushing on with running/tris (like I foolishly did for 4 mths after my chronic pain started) will likely make things worse.

    The bottom line is everyone's situation is different, so you have to conduct experiments and find out what helps, what hinders.

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  12. Thanks for your thoughts TriAgain. I meant to say orthopedic doctor above. I don't know where the term osteopath came from.

    I just saw another doc. He said chondromalacia/early arthritis. He said to stay active and even run as pain allows. He said my ITB was real tight and the timing of my hams/gluts/back firing was off.

    I can't explain how down I am. Life has fundamentally changed for me. Even if I can run a little bit, it will never be the same. I'm also kicking myself for climbing two 500 step towers in Europe last March. Maybe I'm in denial, but I'm thinking that is the straw that broke the canals back and maybe I could have recovered if I didn't do all those steps.

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    1. You don't need to explain how down you are to me Roger. I get it. Triathlon was my life. I got much more satisfaction out of it than my job. It was the challenge that kept me going. Losing it has been one of the the hardest things in my life - but the chronic pain which colours every day life is worse. I do have some relatively pain-free periods and they are Heaven!

      I found slowly over the years, the triathlon obsession fades, but I still miss the endorphins from exercising outdoors. Swimming does not quite cut it - esp when I can't really kick. On the up side, I have become more connected with my kids since stopping tris - endurance sports can become very selfish.

      My goal now is to fix the pain. A new type of Ironman - fix the pain while still staying moderately fit through swimming, walking, upper body weights and watching my diet. If in 5 yrs I'm out of pain and can beetle around on an MTB, that would be Nirvana.

      I never did any triathlon that was as hard as this knee pain thing though.

      I doubt the 500 steps were the main problem. Like me, it was probably a cumulative thing over the years, and it would have happened anyway.

      Hang in there mate - you seem to have caught your problem early so have a good chance of fixing it if you are smarter and more patient than I was!

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    2. Roger, the sooner you accept your condition and limits that go with it, and move on, no matter how difficult it is, the better for you. I have been on sick leave for seven months but I found the strength to go back to work full time. My knees still hurt me, even though less than before, but life goes on ...

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  13. Finding a good PT is really really important. In my case, my knees were so bad last year that I couldn't walk 70 steps without pain. Chondromalacia + Tendonitis in both knees. I had a horrible time. As many of you know I started PT with a coach who has been working with D.Kelsey for many years. She got me back in shape in 4 months. I'm still dealing with some tendonitis and quad issues BUT the improvement has been awesome for me. Yes, it costs money. But for me it really worth it.

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    1. Athena,

      That is wonderful news! And, in 4 short months? Wow. I have seen 6 PT's (spent thousands of dollars) none of them followed "low load & high repetition" and every single one of them prescribed single leg squats, strengthen quads, vmo! I think PT is based on old science that just doesn't work. So, I have devised my own walking program based on Doug Kelsey's approach. I did buy a total trainer (found a cheap, used one online) however, no luck. I found my right knee just could not handle the motion even at the lowest angle. May I ask; what sort of program worked for you? All the best.

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    2. Single leg squats are also what every medico & PT I saw prescribed, and IMO are probably the single worst exercise you can do for long-term chronic knee pain. They are too much load too soon for most people.

      After 3 yrs of experimenting, and scratching my head as to why I can spend hours walking over rough ground, extracting myself from bogs, jumping off fences and balancing on boulders while fishing and cause no additional knee pain, yet 5 mins easy spinning on a bike brings the on the familiar burn, I've found my answer:

      http://www.theaustralian.com.au/life/weekend-australian-magazine/training-the-brain-to-beat-pain/story-e6frg8h6-1227202215911

      I'm pretty sure CNS changes and not cartilage damage are now my primary problem.

      A torn meniscus and subsequent surgery on the L knee while running re-wired my CNS to believe that triathlon was 'dangerous' for my knees - so they both packed it in. I have to re-wire those neural pathways (and there is now evidence to show it can be done).

      Unknowingly, I think this is what the SMK and Kelsey approach achieve in part through gentle regular knee motion (relative rest = the CNS thinks the knees are healing) and motion which is edged up in intensity over time (the CNS starts to learn that using the knees is not dangerous to them). The process could be accelerated by via the mental exercises described in the above link.

      Of course, this is only relevant to knee sufferers who appear to have no acute injury. It relates more to chronic knee pain where CNS issues have taken over from physical damage, and the nervous system is producing pain signals out of proportion with the actual damage.

      I've raised the possibility that Richard had CRPS on here and I think he correctly identified that he did not (not in the full sense of the term anyway). But I'm sure he had chronic knee pain triggered by physical damage (hard cycling and walking) that lead to CNS changes such that his initial acute overuse injury became chronic. Remember how in his book he said meditation helped? That, combined with a slow graduated return to using his knees probably reversed those CNS changes, while at the same time allowing his over-worked cartilage to settle. I'd guess his cartilage probably healed in the first 12mths, but his pain continued for longer due to the CNS changes.

      Meditation/relaxation techniques certainly work for me when I'm patient enough to do them properly.

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    3. Hi TriAgain,
      I've read many of your posts online and definitely feel your pain. I've been experimenting for 2 years now and walking is the only thing that helps. I've just started to dabble in CNS as I believe that is a component for me. So thank you for the link I will be pursuing it further. I also started clenching my teeth in my sleep which leads to headaches, jaw pain (TMJ) and I believe it directly linked to the knee saga and CNS.

      I recently saw a Naturopathic doctor regarding nerve pain and CNS since my MD is completely useless when it comes to this. He told me meditation and to significantly increase essential fatty acids in my diet. I already take fish oils but I've doubled up and increased the amount of nuts and seeds in my diet.

      I stopped PT and single leg squats a LOOOONNG time ago; I knew it was causing damage. Many of the PT's I saw were all structuralists too.

      Best of luck,
      Alex

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  14. Hey Anonymous, I'm still not 100% and the tendonitis keeps bothering me from time to time. When all this nightmare started, I couldn't walk normally, my knees wouldn't go to full extension for example. I was in so much pain. The training I'm following is similar to the one described in Kelsey's book. I started with the total trainer on a very low level and went up little by little. Some exercises had to be adjusted depending on my symptoms. If you cannot do the total trainer now, there are other exercises you can do to build up your knee and be able to work on the TT. For me the good thing about having a coach is that I can always contact her when I have questions, or when my knee feels weird. And that means a lot to me because it is really difficult to understand what is going on sometimes.
    Don't think that because you cannot use the TT now there isnt anything else you can do :)
    I've also had PRP injections that helped somehow.
    and I also do core and balance exercises.

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    1. Thanks Athenea!

      What are you doing to combat the tendonitis? I too have tendonitis + arthritis in my knees and I find no matter what I do I can't shake the tendonitis component.

      How long did it take before you noticed improvements with the PRP? I had one PRP injection 3 weeks ago and so far; I don't notice anything. I also had 5 prolotherapy injections prior to that. My doc says PRP can take 6 weeks to notice a difference.

      Thanks!
      Alex

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    2. Hi Alex,
      Tendons take long time to heal as well, maybe not as much as cartilage though. I've had tendonitis a few years ago but it was just a bit of inflammation and with rest everything went back to normal. What I have now "experts" call it Tendonosis, basically is a cronic tendonitis. Eccentric exercises work very well for tendons. I've done some in the total trainer, but another one you can do is a "leg extension eccentric". Let's see if I can explain it. Sit down on a chair with your legs in 90 degrees. Tie a 1,5 / 2 kg dumbbell to your ankle. Now with the help or your arms or the opposite foot, raise the involved leg. Keep it straight. Now tighten your quad and put your leg down counting 4-5 seconds. If it hurts it's ok. But make sure the tendon hurts only, if you feel pain in the patella or somewhere else don't do it. Tendons usually need a bit of stress to get better. So with this exercise your tendons work only in the eccentric part (concentric part is assisted by your arms or other leg). I am sorry if this is not very clear, also English isn't my mother tongue so apologies in advance.
      Regarding PRP it took me 2-3 months to feel some changes. But to be honest I can't say if my improvement was because of the PRP or the exercises.
      It's quite frustrating...
      I'm actually having a huge setback now, probably as I was travelling and couldn't do my routine in the total trainer.
      I hope to recover in the next few months.
      Let me know if you have other questions :)

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    3. Regarding the pain you may have when doing that exercise.... it shouldn't be more than 3 on a scale of 10. Should not be really painful, you can feel some discomfort or little pain but that's all. This exercise works for me as I also have "quad inhibition" , apparently my quad has decided to shut down xDD Trying to revive it now.

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    4. Thank you so much! It is helpful to discuss what has worked/doesn't work with someone experiencing the same struggle. Sorry to hear about your set back, wishing you a speedy recovery.
      -Alex

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