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

26 comments:

  1. Hey Richard, just wanted to say a quick thank you for your blog and your book. I'm an avid 45 year old male cyclist, 6' tall and 172lbs that experienced anterior knee pain during a much longer and harder ride than usual on Feb 2. Pain was more of annoyance when it happened on the ride, but the next day my knee was in so much pain that I could barely stand to move it. I rested a couple of weeks and it seemed to be feeling better rapidly so I tried another ride more of my usual length and difficult and the next day I was limping and in pain again but not as bad as the first time. The injury surprised me as I had no symptoms besides noisy knees previously after four years of cycling. I went to a sports doc and was diagnosed with pattellofemoral syndrome. One thing the sports doc said was that I would need to exercise to recover and that only rest would not help -- pretty good advice! PT was recommended and I started reading up on the condition when I came across your book. Now I'm trying my own rehab using the walking method that worked for you. I got a Fitbit and am walking at least 10,000 steps per day and usually more than that. I have a desk job so the Fitbit is also used to remind me to get up and walk every hour if it detects I'm being inactive. I also have crepitus in both knees and the injured one is the noisiest but I think it's already quieting down some. I caught mine early and didn't keep pushing through the pain so hoping my recovery will be in months instead of years. I can walk all I want even up stairs with no pain during or after -- it's just the cycling that is giving me problems. Your book was an encouragement and it brings me some hope that I can get better and eventually return to cycling. I've been reading back through your previous blogs and finding them helpful. Thank you again for your work on this topic!

    --TCB

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    1. Thanks for dropping by, and please update us on how you're doing!

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    2. I am hoping for a miracle.Due to osteoarthritis my knees cause me much pain. I do not want knee replacements so I am searching. Your book and this blog are giving me hope and I am greatful.Maura

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  2. Hi Richard (and TriAgain),
    I have been obsessively reading both of your works. I had PFPS for 8 years, worked carefully with a great therapist, but could never really get past a certain level (I didnt have constant burning knees anymore but could do much with them at all without flaring them up). Its a super long story. Anyhow I finally made progress after a lyme diagnosis and treatment, did super well for two years, (could carry a 30lb pack up and down our local "mountain"for several hours) and thought I was fine to return to do a little ice skating (which is what caused the problem in the first place). I was wrong,and in denial about how much of my problem had been lyme and how much PFPS,....so I am back at the very beginning. I was shattered at first (still am, really). So I am trying to figure out how to heal them AGAIN. I am 3 months out from the reinjury and doing the walk around the house thing. My questions to you guys (or anyone here) 1. When you keep getting up and down from a chair or couch to walk around, did you use your arms to assist? it seems like you are doing a lot of unintentional squatting otherwise. and from the floor? Trying to keep some core work but its hard to get up from the floor without using your knees. 2. It seems like triagain was tolerant of some amount of pain in doing sissy squats etc... Dr Dye seems to suggest no pain... Richard, when you got to the point of walking hills, were you essentially pain free or not? Thanks for any and all help, Heather

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    1. Hi Heather.
      8 years is tough, that is a long haul. On the plus side, you have shown you can make progress.
      The getting up from a chair/couch thing is interesting, and something I've not mentioned in all my ramblings, but it is one of my gauges of where I was at. Yes, at its worst I always had to use my arms to assist. Now I notice I mostly don't have to use them, and it has no negative repercussions. But if I've stirred my knees up a bit (like today after riding too hard with a group y'day where egos got involved), I'll tend to use my arms a bit to get up.
      Re pain tolerance, I am fairly tolerant of the chondromalacia type pain (sharp catching under kneecap) which is mostly what I get with sissy squats, and mostly for the first set (1 do 3 sets of 10). By the last set, that pain has largely disappeared. But I try not to do anything which causes the PFPS long-lasting burning type pain. My daily short flat 20min walks rarely cause any additional pain. At its worst, I found the Dr Dye concept of 'no pain' almost impossible to gauge as my knees were in some degree of pain (burning, stiffness, aching, discomfort) all the time. So mostly I tried to figure out what I could get away with without making them worse.
      Have you tried a long-term course of anti-inflammatories? The was they key for me. A lot of people have said their gut can't tolerate them, but even if that was my situation, I'd have taken them cos 5-6mths of gut discomfort would have been worth it to knock out that terrible constant knee pain.
      All the best, TriAgain

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    2. TriAgain,
      So in reading earlier posts, I see you took Lyrica for about a year, and it may have helped some. My PT is pretty sure I have a "Brain" component to my pain (beyond, all pain comes from your brain), although she would almost certainly not advocate a nerve pain med. But I have some gabapentin I never took in the Lyme treatment, and I have occasionally taken one at night, and its like a magic eraser until noon the next day for pain. (which is when I guess you would take a second dose). But I am afraid of masking pain TOO much. So the conundrum...if enough of my pain is CNS, and that is keeping me from progressing, I would take it. But (although I wouldnt go cycle or something like RunnerD did) even with being careful, if I did MORE damage (whatever the damage is, MRIs never said anything more than mild effusion and I think maybe a bone bruise), I suppose lose of homeostasis is the thing, then I could trash my knees worse. SO, keeping in mind, I KNOW you are not a doctor of any sort,.... were you able to monitor your pain on the Lyrica so far as to avoid flares/ill advised activities? I find it worked WAY better than my diclofenac does. I know its a drug you have to wean off, but that would be worth it if it allowed me to get more clearly on a path to recovery. BTW, I do not have CRPS symptoms as described by anyone here or like what Caveman had. Just anterior knee pain, burning, that spreads into my thigh muscles at times.

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    3. gabapentin test....took one this morning. Very drunk feeling/acting in some ways. Takes the edge off the pain but pain is definitely still there. No magic eraser this time. I expect that might disappear with daily use but right now I can't see driving or working. (its break this week so I am using the time to experiment.)

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    4. By disappear I meant the drunk part.

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    5. It was not painful to walk up the hills, Heather. I definitely wouldn't have done it otherwise.

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  3. Hi TriAgain,
    Yes, I have been taking diclofenac since January. It does take the edge off some thankfully, and I guess I will be on it long term (eventually I guess I get to take a PPI as well to protect my stomach, judging from my past history).
    I answered my own question unfortunately... I got up from my camp chair quite a bit the other day (even with arm assist) and flared my knees (the chair forces your butt to be below your knees when you rise up, which is probably a horrible angle for me). Its tough because its nice out and I want to sit out on the porch but also do the walk every x minutes thing, but I cant take the getting up and down that often it seems. So I guess what I have now is 2 x 10 min walks on the flat road in front of my house. I have been reading back through all the comments in this blog (didnt realize how many there were!) and I am where you say that you are finally seeing a difference after 10 months of Richard's advice. So I guess I need to be patient. Which is so hard.
    One of my problems is I dont know what I did right last time exactly...my knees were for sure not as bad when I got the lyme treatment as they are now, but it was only when I got that treatment that I could slowly progress my PT (total gym squatting, walking...eventually hill walking, training to backpack again..). I should mention I have been a very active outdoor sports person through my 20's and 30's until PFS...now I am about to be a 50 year old woman and having a tough time adjusting my vision of who I am... although right now I just want to be out of pain. I have a joint first PT but even she overestimates quite a bit what I can actually do.

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    1. What was the treatment for Lymes disease Heather?
      The anti-inflam that really helped me was Celebrex for 5-6mths.

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  4. Lots of antibiotics/antifungals/anti-some other things I forget, for the most part. I had a friend who kept nagging me to go see a Lyme specialist and I wouldn't since it was so clear to me that I had an overuse injury (kept skating even as my knees became painful...I was addicted I would say. That was 2008). Finally in late 2015 I was put on a month of doxycycline for a dental procedure, and I noticed I wasn't being set back with very small progressions anymore. So I went to see a Lyme specialist. I spent 2016 working on rebuilding my knees and legs, and 2017 training to backpack again. Then I got way overconfident (and had also changed my thinking from "its an orthopedic problem" to "it was all a Lyme problem"). And now I am back in hell. really miserable. I had forgotten how awful this all is. I just hope without the Lyme it wont take 8 years, because I don't think I can hack that. Really if I can get past the fairly constant burning phase that would be huge.
    I know my antiinflammatory takes the edge off because I tried to stop taking in back in February and regretted it pretty quick. But it certainly doesnt hide pain that much. Is Celebrex a better antiinflammatory? I havent tried it.

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    1. I really don't know much about the different anti-inflams, but Celebrex made a big difference to me.

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    2. Heather,

      Hats off you are not giving up.
      Just want to share some observations. For burning knees 20 min walking+walkarounds every X min and PT on top of that can be a killer for the joints. It may be depressing to hear but this is my experience. Total rest for X amount of weeks or months gives better perspective on the best loading available, especially to people like me who are prone to do too much. Sustained rest is the most under rated and difficult exercise there is but extremely effective in some cases.

      When resting, I make sure to boost the circulation by moving the legs mainly in the air oftentimes or tie a band on the feet and pump with the ankle when laying. When the synovium is inflamed, the blood circulation in the leg can be problematic, especially when you cannot move much so I think this helps.

      Good luck,
      S.

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    3. Thanks Sveto,
      I am not really doing PT, other than upper body and a bit of core work. Very carefully I might add. Also my walkarounds are not that frequent really since I have found the action of getting up and down from the couch/chair is probably aggravating them. I am not sure I can do total rest, I live by myself and have pets to care for. Also I am scared of the downward spiral that can cause.

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    4. Crossing fingers you find a way to get better, dear!

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    5. Sveto,
      I am picking up pieces of your story reading back through comment sections. Can you summarize what you did? It sounds like you are a success story and you may have started from total rest.

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    6. Never mind, I found the posts..:)

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    7. Heather,
      I am far from being a success story due to many complications following the massive inflammation and my tendency to do silly things in bad moments. I have tissue damage, nasty muscle imbalances, surgery and other things to sort out in the next years before it can hopefully be a genuine and complete healing.
      But I am learning and perhaps becoming better in "äctive" rest when needed. The last time I lifted completely the load for extended period, I've been doing simple yoga with modified sequences that my knees are comfortable with for at least some hours a day. After all the body is designed to move. This minimizes to some extent the risk of slipping in the downward spiral you mention. Dr. Dye's theory is that the knee is a self repairing mechanism, meaning you have to stop disturbing the process (which can have multidimensional connotations besides load tolerance I think) but, generally, that is why I think rest and good sleep are very important because the knee repairs itself during those periods. This is at least in my case.

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  5. (split into two comments)
    1/2
    Hello, I am German, moved to the US 5 years ago, and now live on Long Island (around where Richard lives). My story is young, but I had constant knee pain between November and March and found some “crazy” German pain therapist (ex mechanical engineer), who published 400 German videos on his youtube channel (and wrote a book) on how to fix pain of all sorts, including knee pain, and avoid surgery. He also educates other people to apply his method (more on him below). He is somewhat controversial, but many people believe in his method and it seems to help me since I am (near) pain free for a few weeks, although didn’t return to running. Here is my story: I am 42 years old and was a regular runner with no issues; however, in November 2017 I ran up Masada mountain in Israel (huge steps) and on the way down, it was like someone put a knife into my right knee. However, I still had to go 40 minutes down and did it. The next day I tried running, same feeling, but I ran anyway.
    Then I stopped running and the pain remained even while walking. Couldn’t even go up or down stairs without limping. Back in the US, I went to an orthopedist, he did an X Ray and said there is nothing wrong, I just have to rest a few weeks. Pain was lowered through resting but the minute I started running again, it came back.
    I then looked for a physiotherapist and he “worked my knee” which made the pain come back stronger.
    On my next trip to Germany I did an MRI and it showed a half inch diameter hole to the bone in the cartilage behind my right knee cap. It also showed an inflamed knee cap and some fluids in the knee. Bad news!
    I went to 3 doctors and they proposed microfracture, microfracture with some cartilage cells or juvenile donor cartilage.
    Once this happened, I did heavy internet research and found Richard’s book (gave me a lot of hope) and Doug Kelsey. I decided to postpone surgery for at least 6 months and look for better answers. Most important s that you just tell yourself “I am fine not to go running for a year” and be patient. I had many good days but also bad days where I did too much. I noticed on my Apple Watch that I could go up to 5k steps a day without pain the next day, but when I did 7k steps or more, pain came back.

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  6. (2/2)
    Then, through some more research, I found this German guy who owns a company called “Liebscher & Bracht” . Here is his video on knee pain: https://www.youtube.com/watch?v=PH7Ai8fIkZQ - unfortunately all in German but happy to translate.
    His theory is simple, probably too simple, that’s why he is somewhat criticized:
    1) Knee pain is not caused by damaged cartilage
    2) Knee pain is caused by too much pressure on the joint and the body gives “pain” as alarm signal in order for us to reduce the load on the knee
    3) Chronic pain is caused by inflammation which becomes chronic since the body tries to repair the cartilage (increases the amount of fluid in the joint etc) but, because the pressure is too high, the body cant repair the damage and it becomes an ongoing thing
    4) In order to heal, Cartilage needs movement (pressure and release)
    5) The pressure on the joint is caused by 1) quadriceps too short and inflexible (starts at hip and end below knee cap) from too much standing, and therefore increases pressure on knee joint and, at the same time, 2) calf muscle is too short (starts at ankle and goes until above knee cap) and also increases pressure
    6) What the German guy is basically saying is too stretch both of these muscles regularly with simple exercises to reduce the pressure
    7) At the same time he recommends to loosen up the fascia around these same muscles to make it more flexible and don’t let the pressure come back (with Fascia roller etc).
    Not sure I stated everything correct, but I started a few weeks ago and it seems to help. I have to admit, at the same time, I am taking all sorts of supplements (Glucosamin, Collagen, Curcumin). Plan is to do another MRI in two or so months and then see. In the meantime, I still won’t do sport and will keep doing the German guy exercises.
    Happy to discuss and point to more of his videos.

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    1. How do you stretch your quads without compressing the knee and causing more pain (delayed pain). At least for me, the quad stretch is out

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    2. Are there certain points in your thigh you could massage with a tennis ball (i would need to be almost "painful" to massage the spots you feel the most pain in order to remove the tension in this spot). That would be loosening up the fascia. re quads (the front thigh muscle): you can stretch it without putting pressure on the joint but the opposite (i.e. pull it to the distance between the bones increases). sorry if i am not saying everything correctly - my mother tongue is German :-)

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  7. Random musings:
    1. How is it that contestants on shows like Biggest Loser and Dancing with the Stars, who often go from being pretty sedentary to doing hard workouts almost daily, don't get PFPS? (especially Biggest Loser... overweight people going jogging seems rather bad for the knees). Sorry for the America centric post... Biggest Loser takes very overweight folk and puts them in a contest to see who can lose the most weight, with dietary changes and trainers. Dancing with the Stars takes celebrity types (some of whom are athletes) and has them learn how to do some very intricate dance moves with dance coaches, presumably with a lot of training.
    2. Why don't I run into more people with this problem, if as I have read, anterior knee pain is the most common knee problem? I don't personally know anyone with it but can immediately name 4 people I know who have had an ACL surgery. Is it just that types like us (possible exercise addicts, competitive etc who make the mistake of training through knee pain are rare? I have read through this entire blog this week.... I am sure there are way more people out there who read it and don't post...I was one at one time.. but I have to imagine anyone with the kind of knee pain we have would find it. Are we just the far end of the PFPS bell curve? The unlucky ones? (or the ones whose brains are best at denial and such?
    Even though I wouldnt wish this on anyone, glad to have some fellow peeps out there. Especially ones willing to talk about the mental health aspects, because I have that in spades.

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    1. Hi Heather
      I think you have nailed it. A-type, competitive personalities are very prone to PFPS. I suspect there is both a mental aspect to it (athlete types tend to become very aware of their bodies, and hence any little niggles which others would not focus on), and we tend to want to keep doing our activities, whereas others would just stop. I still take anti-anxiety/depressant meds that I started while dealing with the worst of the pain/dysfunction. I'd like to wean myself off them, though my Dr does not think it is necessary, and I've found my thinking is so much sharper on them, and my work so much easier, I don't know how I functioned before. I suspect I had depression/anxiety issues well before the PFPS started, but never really knew it. Triathlon was my medicine for that, but when my knees went & I lost my competitive outlet, I really spiraled downwards. I'm back at a place where I don't really compete anymore, but can do enough aerobic and other exercise on my knees that it keeps me fit and the endorphins of hard exercise kick in.

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