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Stay That Knife Surgeon - Knee Pain

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The Start - Down The Rabbit Hole

 

I wasn’t going to post this until I was able to ride for an hour without triggering knee pain, but recent posts about knee problems from a few Trannies got me thinking I should share what I’ve learned before they make the mistakes I did.

 

It will be a long story in instalments as there is much to remember since May 2012. It will piss some people off, but having communicated with fellow sufferers in the US & Canada with the same symptoms who went from extreme athleticism to virtually crippled, I think it is worth telling.

 

Long-time readers might recall, I’ve not been able to train or race for over 3.5yrs now due to chronic anterior (i.e. mostly in front under kneecap) pain, burning & stiffness in both knees.

 

I’m not talking about knees which hurt when you exercise. I’m talking about knees which hurt virtually all the time - even sitting - a deep chronic ache and burn even at rest which descends like a black cloud over every aspect of your life. The only time I did not have pain was sleeping (thank Christ – at least I could sleep).

 

Four years ago, I thought chronic pain was for soft-c*ck hypochondriacs (and in earlier posts on injuries, it was suggested that was my problem). Or I thought it was entirely in your head. But now I know high performing sports people (cyclists, runners) who lived for their sport, were tough as nails, and fell hard into this hole.

 

And here I give an early plug for Trannie KTJ (a physio) who sent me down one of the more left-field but useful paths, unlike virtually every other professional I saw.

 

Some might be thinking that is not my type of knee pain, not relevant to me. But I’ve learned it could morph into that type of pain if you don’t heed the warnings, or if you follow conventional wisdom – I’m thinking of one recent poster who said his knees feel ‘fragile’ – that is precisely the feeling I got a month before tumbling down the hole.

 

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, in the off-season, where I'd back off a lot). It was locking the joint. Even though my GP advised waiting a few months to see if it would improve, I’d signed up for my first IM and wanted it fixed ASAP – mistake No.1, though I’d probably have needed surgery anyway as it was a bad tear. This all happened within 2 months of my best race ever at Gundi in 2012 where I went 4:33 at age 48, a time that seemed impossible to me a few years before.

 

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. If I rode, ran, kicked swimming or did leg weights, they hurt during the exercise, but the real problem was the hours and days afterwards when the pain would increase 5-fold. 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 dis-coloured blue/purple with red blotches.

 

We had to sell our house because I could not maintain the large garden anymore. We moved into a new low maintenance house & garden - I even got the vendor to throw in his ride-on mower for the small backyard.

 

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 because the knee ‘envelope of function’ (more about this later) is massive for triathletes, especially those doing long course. And for many, that envelope can't be assumed to still exist so soon after surgery.

 

But I happily took his advice on board (I was on a fools IM errand), and was back on the bike for one hour rides at 50-70% of pre-surgery effort within 6 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. I battled on with off-season training for the December Wanaka IM until September 2012 when I pulled the pin and started seeking further medical advice.

 

Now, I was already deep down the knee pain rabbit hole but had no idea how much further down the hole the conventional treatments prescribed by most would send me.

 

TBC.....

Edited by ComfortablyNumb

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In addition, my kneecaps were often cold and dis-coloured blue/purple with red blotches.

 

And here I give an early plug for Trannie KTJ (a physio) who sent me down one of the more left-field but useful paths,

 

Sounds like you developed CRPS (Chronic Regional Pain Syndrome) or similar (there are other names for it also e.g. central sensitisation, increased neural sensitivity etc).

 

Treatment is normally pain physiology education, graded exposure, mirror therapy, appropriate medications etc

 

Interested to see what the rest of the story was

Edited by Aidan
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Yeah, please continue. I am eyeing off a trip to the handyman for my ankle. Those connected to me on Facebook can see the scans as I get them.

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The Infuriating PFPS Diagnosis

 

PFPS stands for Patellofemoral Pain Syndrome.

 

Except it is not a syndrome and it is not a diagnosis – as would be the case for example with Downs Syndrome which has a clear-cut genetic cause and diagnosis.

 

Patello refers to the patella – your kneecap. Femoral refers to your femur – the big bone in your thigh.

 

The critical point is that the patella slides in a groove at the end of your femur when you bend the knee – the patellofemoral groove, which suggests this ‘syndrome’ is all about a problem with that mechanism. And here is where many Sports Drs, physios and OS’s get fixated and will often send you down exercise paths that make things worse, or surgical paths that are unnecessary and may make things worse – more on that in later posts.

 

knee_anatomy1_zpsogsd7qix.jpg

 

PFPS is the catch-all phrase the medical world uses to describe knee pain, located largely in the patellofemoral compartment of the knee, when the main symptom is anterior knee pain (i.e. toward the front of the knee), and for which the cause is unknown (e.g unlike YoYo, you did not receive a direct blow to the front of the knee and fracture your kneecap).

 

The PFPS diagnosis will lead you down a maze of treatment options, many ineffective, some down-right dangerous. The complexity of the maze and how deep you find yourself in it will depend on how bad your symptoms are, what you expect of your knee, and what the medico/physio thinks you expect of your knee. Triathletes expect a lot from their knees and to be fair to the medicos, there is significant pressure on them to get you fixed fast.

 

There are some knee conditions where the problem is blindingly obvious. My brother fell skiing and his ski failed to release from the boot. He felt and heard a series of disturbing popping noises, which was several knee ligaments tearing. He knew his knee was stuffed. It was easy to diagnose and to fix – they grafted pieces of hamstring in there, and while it took 9 months before he fully trusted the knee, five years down the track he is skiing again.

 

Moreover, his recovery was within the envelope of a normal person, not an A-Type triathlete. He hobbled about on crutches for weeks. The surgeon advised he do a little on an exercise bike, so he bought an old second hand one and did 15mins each night, slowly building the resistance.

 

Note I said 15mins, not 60mins averaging 28-30kmh on the road with hills which is what my OS indicated I could do. And it felt fine for a few weeks. But I was working on the false premise of an old envelope of function (more on envelope of function in later posts).

 

Being a graphic designer and sign installer, and not a regular formal exerciser, my brother had a very different envelope of knee function, and getting back to regular standing/walking and going up and down a few ladders was probably the perfect rehab, prior to getting back to skiing a few years later.

 

Even my meniscus tear was obvious. There was sudden sharp stinging pain, the joint started locking, the MRI showed a small tear, which turned out to be a big tear once the OS stuck an arthroscope inside (which says something about the diagnostic accuracy of MRI scans).

 

The accuracy of physios using the McMurray test to diagnose meniscus tears is also dubious. Our physio missed tears for both me and my wife using McMurrays, MRIs showed small tears, once the OS got in with his camera, he saw big tears in both cases. I’m now informed pain and tenderness on the joint line where the tibia and femur ‘meet’ (and which I had in spades) is now a better test for a medial meniscus tear.

 

But a meniscus tear is not PFPS. The type of PFPS (I’ll use that vague term) which I developed within a month or so of the meniscus trim was different. I recall it started as an ache on the medial joint line, but now in both knees, becoming an ache deep within the joint, and then a terrible burning/stinging/stiffness under the kneecap started. Normal knee function and daily activity was severely curtailed. I could physically push myself to do all the old things I used to do, but I paid for it big time, especially afterwards. In fact, usually my knees felt a little better during exercise or activity, but they were not.

 

I now believe this problem was triggered by the meniscus surgery, a much reduced envelope of function, and poor advice on what I could do post-surgery.

 

This does not happen to everyone after meniscus surgery. Both my wife and a mate had identical surgeries with the same surgeon and were fine (more on surgeon-shopping in later posts). My wife was back to light jogging in 3 weeks and competed in the Masters Games Athletics in Italy 9-10 weeks after surgery.

 

My mate had a slower recovery, and I recall him saying his meniscus area was still giving shots of pain with certain movements 8 weeks after surgery, but within 6 months he was back racing short course tris.

 

I ended up with 3.5 years of chronic bilateral knee pain and seriously reduced function (as has at least one other Trannie from what I can gather). That put me onto the medical merry-go-round which eventually spat me off to go and find my own answers.

 

TBC…..

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Really curious as to why the other knee was giving you so much grief - the one not operated on. Were you compensating in your movements maybe?

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Really curious as to why the other knee was giving you so much grief - the one not operated on. Were you compensating in your movements maybe?

 

That is likely, I have the same issue, I tend to take the weight to my left foot to save my right ankle. Same with those who have shoulder problems where one shoulder is immobile, always use the one that works, the problem is you do this for a decent length of time and then both are fubar!

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That is likely, I have the same issue, I tend to take the weight to my left foot to save my right ankle. Same with those who have shoulder problems where one shoulder is immobile, always use the one that works, the problem is you do this for a decent length of time and then both are fubar!

 

Yep, been there before. Through injuries to shoulder, hip, knee, ankles, various muscle/tendon/ligament issues. I'm very conscious about making sure my form is even.

 

My current biggie is that the issues in my back are compressing the major nerves that operate my left leg. The pain, weakness etc can cause me to really change my form - even just sitting, or walking around. Have to be very conscious or I'll just flare up my knee and ankle problems on the other leg (caused by traumatic injuries).

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Normally I'd say don't delay surgery, if it is required otherwise you are just prolonging the problem.

 

In this case, I'll say this: As sports people we demand more from our bodies than ordinary folk, so minor errors, old techniques and dated procedures are not what you want if you want the best chance of fixing an injury and continuing on with the sport and attempting to get faster. You should always find the best surgeon/specialist in the field for the type of injury you have or part of the body you have the problem with. You don't take a formula 1 race car to any mechanic. It pays to find out who have the best reputations.

 

I may be wrong but I think ComfortablyNumb's saga started because he may not have gone to someone reputedly good. They may not have been bad but you want the best. That also means you want good private health insurance or plenty of cash.

Edited by Slowman

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Im not talking about knees which hurt when you exercise. Im talking about knees which hurt virtually all the time - even sitting - a deep chronic ache and burn even at rest which descends like a black cloud over every aspect of your life. The only time I did not have pain was sleeping (thank Christ at least I could sleep).

 

TBC.....

Unfortunately I am very interested in this as the above is pretty much status quo at the moment, starting to affect sleeping though. MRI yesterday, traveling the rest of the week (planes are no fun on the knee) so it won't be until next week to be with the physio. It will be good to read all of your story before I get there.

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This story is like when I got to the end of Season 2 of GoT on TV and had to wait for the new season to come out. I had to read the books to find out what happened. Anyone got a copy of ComfortablyNumb's memoir?

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Thommo227

You're slipping K2

 

Yeah passed me by. But Thommo was having knee problems all along.Yep.

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What Mainstream Experts Said

 

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 memory is a bit hazy on this, but you’ll get the picture.

 

First, I discussed it with my surgeon, who mentioned the dreaded PFPS, and admitted that at his last orthopaedic surgeons conference, they had a session on PFPS and agreed they were a bit clueless….which is odd since Dr Scott Dye, an OS in the US had proposed theories on the causes and remedies back in the late 90’s, and published papers in refereed medical journals.

 

My OS started talking lateral releases (the good old mis-alignment or patella mal-tracking theory), but by this time, I must have done enough research to be very wary of surgery and let it go through to the keeper.

 

The mis-alignment theory sits within a broader theory that your knee pain has a structural cause. In some cases, this might be right. My research, and that of others who have real medical qualifications rather than degrees in agricultural science and economics indicates in some cases it is dangerously wrong.

 

The common mis-alignment proposed as the cause of PFPS is patella mal-tracking. The patella does not slide neatly in the centre of the patellofemoral groove, but tracks to one side (typically the lateral or outside of the groove) causing wear and pain.

 

The underside of your patella and the end of your femur are lined with cartilage to help things move without damage – i.e. to avoid the common bone-on-bone problem that is the cause of osteoarthritis, and for which many people have surgery, the pinnacle of which is the Total Knee Replacement (TKR).

 

Next, my GP referred me to a Sports Dr at an NRL club. He was actually seeing my wife who had developed a dead right leg while running (which several others mis-diagnosed as a back/neural problem, and I’d suggested after reading about similar symptoms in triathletes and cyclists it was probably vascular, which it turned out to be – my faith in medicos was disappearing!).

 

Given we were down from the country and I had a referral to him but not yet an appointment, he was good enough to give me a quick consult after my wife. 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 when that knee would ache a lot at various times. 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. At age 7 I fell off an embankment and drove my right knee in to the bitumen road, requiring my father so sew back a huge flap of skin in the little surgery attached to our country house.

 

I recall the horror of him pointing a big fat needle with local anaesthetic at the wound and driving it into the bloody hole before sewing it back together.

 

My brother and I jumped off roofs with parachutes made out of blankets and rope (these slow your descent precisely zero %), and I always raced around on my dragstar pushbike having epic crashes.

 

In college, my left knee took a massive direct hit from a boot (55kg dripping wet scrawny centre trying to tackle 90+kg opposing centre front-on and failing miserably). I limped for 6 months, the knee would buckle going up stairs, and eventually I went for an arthroscope which revealed nothing. I was advised to strengthen my chicken legs.

 

In short, I abused the Be-Jesus out of my knees, and then after being told I had to stop rugby due to repeated concussions, I took up weights (gained 10kg to top out at an Arnie-like 65kg), running, then triathlon.

My bad left knee responded really well to cycling, and was soon as good as gold, though that leg was never as big as the right (I use the term ‘big’ in the loosest manner).

 

From time to time during 20+ years of triathlon, I got pain behind the right kneecap. I had a couple of MRIs on the knee which revealed ‘moderate to high grade patella chondromalacia’, especially on the lateral side (which suggested patella mal-tracking). But this pain never put me out of action for more than a week. Icing and warming it up with a knee sleeve (Thermoskin brand) always saw me back running and riding within days.

 

I recall in 2007 heading off to the Port Mac HIM with quite bad pain under the right kneecap, but wore the sleeve travelling down and on race day, not an ounce of pain. My OS expressed amazement I could do such long training and races with that level of chondromalacia.

 

So the first NRL Sports Dr looked at my MRI scans, diagnosed chondromalacia patella and suggested micro-fracture surgery (which incidentally, he’d had successfully himself) or PRP (blood platelet injections which he could do at $500 a pop). Mirco-fracture is where they drill little holes in the back of the kneecap, and the healing process produces a cartilage-like substance (though not true cartilage as I understand it) which re-lines the kneecap and protects the underlying bone from rubbing. But again, it was more surgery so I decided against it.

 

PRP is supposed to help healing by (in part) stimulating stem cell production (cells in the body which can adapt to become other types of cells, such as cartilage), and reduce inflammation. I never had any knee swelling. It hardly even swelled when the meniscus tore or after the surgery.

 

During this time, I was still visiting my physio and GP, both who were well and truly anchored in the structural cause world. Their view (the most common) was that my patella was mal-tracking laterally, and I needed to strengthen my vastus mediallis obliquus (VMO) muscle to pull the kneecap back into alignment. The VMO is the muscle on the inside of your thigh that runs down to just above the inside of the kneecap.

 

This was despite my physio previously putting a machine on my VMO and concluding that it fired just fine. In some people with knee pain, the VMO switches off, making a lateral mal-tracking problem worse. She had also observed my kneecap in action while moving the leg, and concluded it only had a very minor lateral tilt. Even so, the VMO theory persisted and she have me exercises to strengthen it, including the single leg squat – what I now realise is probably the worst exercise you can prescribe for someone with my condition. In fact every expert I saw gave me the deadly single leg squat.

 

My GP was also on the VMO wagon, and indeed was a runner who had chondromalacia patella himself. He’d got results with VMO strengthening, so shallow single leg squats were again prescribed.

 

Keep in mind that all this was happening against the backdrop of a triathlete who cycled more than 200kms/week, and who had enjoyed watching his chicken legs become somewhat less so, along with the emergence of the most nicely defined VMO he’d had in 40-odd years of life. Competitors with proper legs would marvel after races that my skinny pegs could more or less stick with them on the bike after a few years with a coach (more on that later), though I knew they were less skinny than they had been.

 

So it was off to single leg squat land, and sitting down with a leg out while tensing the VMO, focussing on firing the VMO at the same time as the outer quad (another theory being that the cycling had built my outer quad which was now over-powering the VMO).

 

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. They burned and ached like crazy. There was a point during the squats where I’d get an extra sharp stabbing behind the kneecap (I know realise this was chondromalacia patella kicking in), but that was nothing compared to the constant background pain. No medico seemed to grasp this.

 

During this time, I’d been posting on Trannies about the problem and looking for more answers. It was suggested by a resident Tranny physio I see a Sports Dr at a different NRL club who was a knee expert. So I went to him – another trip to Sydney.

 

He was very thorough, and like my OS was initially pondering lateral releases, but then took video of the knees in action and concluded there was nothing wrong with my VMOs at all, and that there was minimal patella mal-tracking. The problem he felt was hip and glute instability.

 

He also looked at my old MRIs, concluded the meniscus tear had been bad and warranted the surgery, and also noted deep fissures in the patella cartilage (again chondromalacia patella). This was interesting because the pain did suggest the cartilage behind my kneecaps was undergoing some sort of spontaneous meltdown, and I’d been talking to another good triathlete with knee pain who’d had an arthroscope which revealed ‘chalky cartilage’.

 

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). By now I already knew riding was out of the question.

 

Life became depressing. I had constant pain, I could not get the endorphin hits from running and especially cycling which kept me somewhat sane, I struggled to do basic household chores. All I wanted was to lie down with my legs up to reduce the pain. The mood was pretty dark. My world was shrinking and had become small and insular compared to the expansive exciting life I’d had. I didn’t want to socialise. I lost interest in other hobbies. Work was an evil necessity where I had to get through the day in pain, try to make my brain work, then get home fast to get my legs up. I wanted to drink alcohol as it reduced pain. The joy went out of everything. Basic tasks seemed hard. Multiple tasks, which I’d previously handle with ease became a major source of stress. I was completely obsessed with the knee pain and sinking into mental illness.

 

TBC……..

Edited by ComfortablyNumb

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I'm just going to write this long story over the next few weeks and not enter into debate. Take from it what you will.

 

I can understand by now how some readers are thinking "he hammered his knees as a kid and got chronic knee pain" or "he ignored advice to have more surgery, so had long term knee pain". Nothing to see here, move on. But there is far more to it than that.

 

Something I forgot in the last post, about 2 years into the nightmare, my OS did a simple x-ray of both knees. It showed very good joint separation, no bone-on-bone problem that some other Trannies have. And yet my dual knee pain and function appeared to be much worse than the bone-on-bone people.

 

My objective was/is to preserve as much of the internal structure of my knees as possible, having lost 1/3rd of my L medial meniscus in the original surgery. Something in my head just told me more surgery was the wrong answer, and soon I found evidence to support this.

Edited by ComfortablyNumb

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I'm just going to write this long story over the next few weeks and not enter into debate. Take from it what you will.

 

 

 

Unfortunately, being a forum, by telling your story thorugh separate posts over a period of time, you will attract return comments - being inquisitive, controversial, or otherwise.

 

Perhaps roxii can set you up with some other option that you can post your story to, without all the interspersed comments form others? Like he's doing for Naths posts on his Kona prep? People can comment, but they are separate to the topic posts by you.

 

Worth a shot maybe?

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It's going to be the whole drawn out 9 yards, because there will be people who need the detail to decide if they are on the same path, or facing something different.

 

Definitely cathartic, but also I hope the professionals as well as the punters on here learn something. Return comments are fine. I'll probably not answer most, but they will help me shape future chapters and what people are taking from it, so are most useful.

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I am finding it very interesting and looking forward to the next instalment.

 

From someone who suffered from "Runners knee" for a few years (Nothing remotely nearly as bad as yours) and was even told by a physio that maybe I should take up another sport, however found light at the end of the tunnel and am now running pain free.

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Kindred Spirits

 

After 2 years or more of chronic knee pain, I decided I needed to look elsewhere as the standard medical paradigms were not working. Maybe I should have stuck with one professional for the long haul, but the speed at which they move and the cost was not to my liking. I reasoned there must be other people out there with these symptoms who found an answer – at least I hoped so, because if I thought of living the next 30+ years like this, I wasn’t going to make it.

 

Like everyone, I hit the internet and though it took a while I found two websites which were to be a Godsend.

 

First was a blog and E-book by a financial journalist in the US named Richard Bedard called ‘Saving My Knees’. I bought his book - $10 was a pittance compared to what I’d already dropped on medicos, coaches and PTs.

 

Long story short, Richard was a keen cyclist, was training hard for a long hill-climb race, did an exceptionally long bushwalk one weekend and ended up with the same symptoms as me. In fact his symptoms and experience were so similar it was uncanny.

 

He also got that ‘wet ripping’ noise in his knees which I had when squatting down then back up, and was the only other person I found to describe that. I always had a few crunches and pops in my knees when crouching, but when the chronic pain kicked in, this became a much more scary sound – the same one Richard describes.

 

Like me, he got on the doctor/physio/physical therapist (PT) treadmill. They either told him he was stuffed and at 46 his knees would never get better, or gave him the same high-load inappropriate exercises I was given (e.g. single leg squats, seated leg extensions on a gym machine) which made him worse. He was told knee cartilage can’t heal.

 

Like me, his job involved sitting at a desk and that caused severe burning pain. He gave up on the medicos, quit work for four months and went looking for answers and a plan to fix his knees.

 

He did a Hell of a lot of medical research pouring through journal articles and came to the conclusion that cartilage could heal given the correct movement regime (in fact one of the pivotal studies was done in Tasmania on rabbits involving a continuous motion machine). He also found an OS (Dr Scott Dye who I mention in previous posts) who agreed with him, and a PT named Doug Kelsey who has written two books setting out a regime to recover from chronic knee pain.

 

Richards’ first four month experiment failed. He went back to work, but was in terrible pain that was increasing, so quit work for good and had another go at recovery, now living off his meagre savings.

 

His research led him to conclude that regular gentle movement was the solution. The muscle-focussed (structural theory) approach of mainstream medicos was too much load for a set of knees which had fallen so far. He decided the solution was in a joint-based approach. He had to let the joint heal before he could start working on muscles.

 

In common with myself, Richard never really had a muscle problem anyway. He was cycling hard 3-4 times/week, and (unlike me) had naturally very muscular legs. How any medico could conclude his muscles were weak is beyond me (and him) but this is the myopic paradigm most work in.

 

Richards’ recovery program was based around gentle flat walking, interspersed with lots of lying on his back with his legs up, typing on his laptop and playing guitar. He got a pedometer and religiously recorded how many steps he took each day, and gave his knees a pain score morning and night.

 

After 6 months, he had progressed almost nowhere….and he got tennis elbow from typing in a lying position and his back started to hurt. He also noted that everyday activities (e.g. carrying heavier items to his apartment, bending down too much) could make his pain score worse.

 

So he modified his walking regime, and here my memory fails, but I think it involved shorter more frequent walks around a swimming pool, lying on a pool lounge with his legs up inbetween.

 

We are talking an absolutely massive modification in activity, from smashing it up hills on a bike for hours, to 10 minute walk-arounds and lots of lying down. He also rigged up a bungee contraption so he could do gentle shallow squats, but at way less than full body weight.

 

He monitored his knee symptoms at an OCD level. Whenever he felt that tingle coming on, he backed off for a few days.

 

Somewhere within this new gentle knee movement regime, he started to feel real improvements. He walked further, and added some hills. By now he was living in Hong Kong, and there was a steep uphill trail which took about 30 minutes to ascend. This was his goal. Like me, he found going downhill worse than going up.

 

Finally, he was ready to try it, but even then he’d walk for 10 minutes, sit for 5, then go again.

 

Eventually, he could do it all in one go and recounts that incredible feeling when he realised he was puffing and sweating, but with no knee symptoms. All this took 2.5 years. Now he is back racing his bike hard. But he listens to his knees carefully and also makes sure he rests with legs up for at least 30mins after a ride (this was one of my problems I now realise – I’d smash out four hours of training, have a quick feed, then spend two hours working in our huge garden).

 

I posted about Richard in previous threads, and got responses along the lines of “would you trust a financial journalist over a trained medical person” (yes, I would if he’s been through exactly what I’m dealing with and has won) and “big whoop, his knees hurt, he stopped doing things which hurt them, they got better” (a gross simplification, and ducks the issue of the dangerous advice of the so-called experts).

 

I’ve been participating in discussions on his blog for more than two years, and have come across numerous other people with pain like mine and Richards, or other types of chronic knee pain.

 

One I'll call Ted lives in California. Same age as me, he was a very good Masters cyclist who started getting patella chondromalacia pain in one knee, went to an OS who did the deadly ‘chondro shave’ (more on this later), where they shave away the ‘fluffy’ damaged cartilage on the back of the kneecap and a bit more. Within months of the shave BOTH his knees imploded. What’s worse, the OS was only supposed to go in for a look, he had no permission to take bits out.

 

Ted could hardly walk down his drive now, let alone finish what they call in the US a half-pro cycling race at the front of the field. His OS was useless, the standard PT exercises sent him backwards so like me, he went on his own journey of discovery, though much deeper looking into diet, supplements, biochemistry and other things I can’t pretend to understand. Being in the US, he was also lucky enough to have 3 visits to Dr Scott Dye (mentioned in posts above) who just shook his head at the exercise regimes others had given him. Ted devised his own regime of gentle knee movement, including shallow squats but supported by bungee chords, walking and rowing to maintain some aerobic capacity, but not using his knees .

 

Like me, he is more than 3 years into the nightmare, is back on his bike 5 days a week, but only cycling moderately. At this time, he is not sure he will ever ride a bike hard again, but has achieved massive improvements in pain and function. We communicate regularly for mutual support, as our sport/training was such an important (too important) part of our identities, and we really struggle with its loss.

 

Then there is Luis and his wife, originally from Bolivia but now working in Canada. I found Luis on a body-building website, describing how he worked with his wife (a former Bolivian National representative at running) to fix her knee problems. He later popped up on Richards blog. Again, the remedy was a regime of gentle walking over many years. She is now back to moderate 5km runs.

 

The second website is called KneeGeeks. On there, I found a poster called Terry42 who in his mid-40’s got debilitating pain in one knee. Just stepping up a small gutter or getting out of the car was difficult. He tried all the medico/PT suggestions but none worked and all made it worse. Every now and then, he’d have a crack at a game of basketball, and it ended in tears. He describes how he became obsessed with the knee pain, it dominated his thinking and impacted his family and work life. Over time, he just avoided every single thing which he’d learned made his knees worse. 4-5 years later, he is back playing all his sports.

 

I’ve read a lot more than listed above, and have been directed to some very good material which I’ll talk about later. But the take home message is that cartilage can heal and you can regain good or full pain-free function with the correct regime. It is likely to be a regime you’ll have to nut out for yourself, because the experts can’t feel your symptoms or gain the intimate knowledge of all the things that help or hinder.

 

And as my title says, be very wary of surgery (more on this later too). The question is, why do these regimes work, when the experts fail (or in reality, make you worse). An explanation of that will follow also.

Edited by ComfortablyNumb

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The Red Wedding (Summer is Coming Kenneth)

 

I was going to wax lyrical with more long-winded stories before getting to this point, but couldn’t handle the guilt of inflicting additional suspense on a bunch of impatient triathletes wanting me to cut to the chase….though I expect even this chapter won’t entirely appease.

 

So far, I’ve indicated that for chronic anterior knee-pain where there is no obvious physical cause (e.g. no torn meniscus, blow to the knee, torn ligaments, patella tendonitis), sufferers often get put in the PFPS basket, the experts assume the cause of the pain is structural and prescribe a range of muscle strengthening exercises which either don’t work, or make the pain worse.

 

Of course the disclaimer associated with the above paragraph is you need to rule out other obvious structural causes first. So you need to visit a suitable expert (GP, OS), get the tests done, rule out any obvious structural cause, then deal with the potential frustration of them saying “we can’t find anything, you have PFPS”.

 

Before I cut to the chase, I want to say something more about chondromalacia patella (degeneration of the cartilage on the back of the patella). While this is undoubtedly ‘structural’ damage, it is not necessarily the cause of your anterior knee pain, or not the only cause (stay with me here).

 

MRIs and arthroscopes often reveal quite severe chondromalacia patella, which causes no pain or problems. I had it quite badly in my right knee, I had some symptoms from time to time, but could happily whack out an HIM. Silly little things caused me more problems, like pushing in the clutch on the Hilux and walking down steep uneven ground. My brother-in-law always wanted to take me rock fishing, but I hated it because it meant stepping downhill over large boulders. And yet I could belt out a 2 hour run no problems.

 

But the pain of chondromalacia was quite different to the chronic pain I ended up with (more in the next chapter), though I do think structural damage can trigger a second type of non-structural pain…..and here it is…..drumroll……

 

Loss of Tissue Homeostasis and Reduced Envelope of Function!

Loss of tissue homeostasis means loss of tissue balance. There are a whole range of chemical and cellular processes going on in your knee, and if these get out of whack, it can cause inflammation, irritation and pain. For a full-blown scientific description see an article by Dr Scott Dye here –

 

http://www.researchgate.net/publication/7749608_The_pathophysiology_of_patellofemoral_pain_a_tissue_homeostasis_perspective

 

Not one medical expert mentioned this to me, though some (a pain specialist – more on him later) skirted around the topic, prescribed treatments which I now realise were possibly aimed at restoring homeostasis, but also prescribed a treatment which would do the exact opposite!

 

This is disturbing, since Dr Dye has been researching knee tissues homeostasis for decades, and treating his knee patients accordingly. I’m sure experts in Australia know about it, but they either find the concept too hard to grasp, too esoteric, or the implications for their patients are so difficult they can’t go there, so fall back on the standard treatments for structural problems, which only make matter worse.

 

Once you lose homeostasis, you also reduce your envelope of knee function. In other words, once your knee could cope with a hard 100km bike ride without becoming sore, stiff and irritated. Now (at the sort of extreme which I reached), you can’t even mow a lawn for 20 minutes or go up and down a small ladder without worsening the situation.

 

The diagram below shows Dr Dyes explanation of envelope of function, and how it is impacted by three things – load, frequency and flexion. Any of these things in isolation, or in combination can take your knees to a place where they are outside their envelope of function, and so they hurt.

 

Dye%203D%20EoF_zpsu3t3d2jt.jpg

 

You can see that too much flexion (knee bending), too much load (e.g. running, cycling, squats) or doing something too frequently (e.g. running or cycling where in even one session your knee bends numerous times) can take you outside the envelope of function. Once outside the envelope, you get pain (and possibly swelling, stiffness, loss of function).

 

To quote Dr Dye “The aphorism of no pain no gain applied vigorously and inappropriately to a symptomatic patellofemoral joint by well-meaning, but ill-informed therapists has caused many patients knees to become symptomatically worse. Any activity-induced pain perceived within the patello- femoral joint is an indication of a supraphysiologic loading event that will only subvert normal healing mechanisms, similar to putting flammable liquid on a fire one is wishing to extinguish”.

 

And;

 

“The patellofemoral joint is notoriously unforgiving and intolerant of surgical procedures that do not respect its special biologic and biomechanical characteristics……. . I recommend a gentle, minimalist surgical approach in most

cases. The principle is to maximize the envelope of function for a given joint as safely and predictably as possible……….. Furthermore, once that maximum has been achieved, one should encourage the patient to load the affected joint

within its envelope.

 

You will not resolve the problem by doing anything which takes you out of your envelope of function, an envelope which may now be unbelievably small.

 

So the single leg squats prescribed by your physio who is working on the theory that you need to build your VMO may actually be taking you outside your envelope of function, and making your knees worse.

 

Restoring tissue homeostasis by remaining inside your envelope is one of the most challenging and frustrating rehabilitations you will encounter. For many (like Richard Bedard), it required quitting almost all everyday activities including his job. Not surprisingly, most people fail, chuck in the towel and resolve to live with the pain and a much reduced quality of life.

 

Later, I’ll provide some links to resources which can help you figure out what activities you can do in an attempt to restore homeostasis, but if you are at the level I’d sunk too, forget anything that even looks vaguely like triathlon.

 

This is the challenge I was set. It made triathlon look like a kids tea party.

 

TBC….next up, have you actually lost tissue homeostasis? – the symptoms.

Edited by ComfortablyNumb

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A WhiteWalker Cometh?

 

I changed my mind about covering knee symptoms and their implications because this needs to be covered first.

 

Tranny KJT posted about this in my old threads, and it got me looking in some interesting and productive places (Aidan also mentions it above). KJT told me to look at the work by Lorimer Moseley from University of Adelaide on chronic pain and CRPS. Some posts on KneeGeeks also suggested I should also research this area.

 

CRPS stands for Complex Regional Pain Syndrome. It sounds like some whingers BS that is all in your head (you are imagining and/or making more of the pain than you should) – except it is not. It is real neurological changes in the ganglia of the spine and brain, and sometimes the local nerves in the affected area. What this does is massively increase your sensitivity to pain.

 

I discovered one of my Board members 13yo daughter got CRPS after hurting her knee at soccer – except the pain was in her foot. She was in agony with terrible burning pain, and even the light touch of a sheet on her foot made it worse. She spent 2 weeks in John Hunter Hospital on a Ketamine drip (nasty stuff) and as Aidan mentioned above, had mirror therapy and other interventions to re-wire her neural pathways. It was a 12 month recovery process.

 

Full-blown CRPS has a range of symptoms including burning pain, discolouration of the skin, clammy or sweaty skin, extreme sensitivity to touch and pressure. I had the burning pain and discolouration in my kneecaps, so thought I should ask my GP about it. He agreed it was a distinct possibility In the meantime I’d found a top pain specialist (again via Dr Google) and got a referral to see him.

 

The pain specialist diagnosed patella chondromalacia (which I already knew, but don’t think is my main problem), muscle wasting around the knees (not surprising) and pre-CRPS, which meant not full blown CRPS, but getting there.

 

He prescribed a whole host of things:

  • A book on pain management (good, but seemed to be suggesting the need to accept your pain and get on with life. I later found material which indicated through neural exercises you can overcome pain);
  • Natural supplements to reduce pain;
  • A nerve pain medication (Lyrica) which is pretty nasty. It made me very hazy and though I got some initial relief, weaned myself off it after a few months as I couldn’t function at work;
  • PRP injections – I had 3 in each knee and this guy only charged $110/pop – happy days. These gave some almost immediate relief, I’m sure helped with cartilage healing, but were not the magic bullet. I still had to be very careful with my envelope of function;
  • The only negative – the dreaded single leg shallow squat within the range of no pain to re-build my VMOs. As stated above, impossible and counter-productive, though to be fair you can’t expect a pain specialist to be a knee expert and know the theory of envelope of function (but I would expect an OS and physio to know about it, and it seems most don’t).

One other treatments for CRPS is a controlled and graduated return to activity to re-wire the central nervous system to learn that the physical activity causing you pain is not actually doing you physical damage. This led me into some very useful material on neuroplasticity (anyone see the Todd Sampson program ‘Redesign My Brain’?).

 

You may also remember the Tranny thread on Neurotrictional Sciences (http://forums.transitions.org.au/index.php?showtopic=62722&hl=%2Bken+%2Bware#entry1015593), Ken Ware with his ‘tremor therapy’ and getting paraplegic John McClean to walk again.

 

I suspect his tremor therapy is a radical/rapid form of the controlled return to activity used by CPRS experts. It forces the central nervous system to repair or use alternative pathways to overcome the disability (or the pain) and would work in some instances. But for someone with loss of knee tissue homeostasis, it could be dangerous as it would push them well beyond their envelope. You would have attempts at neural re-wiring clashing with biochemical and cellular processes in the knee.

 

The take home message is the whole CRPS experience led me to some excellent work on central nervous system re-wiring techniques and while not the entire answer, had a whole host of benefits.

Edited by ComfortablyNumb

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Interesting that this comes up, I re-read Dye's paper you are quoting last month. (his early one where he scoped his own knee with no anaesthetic to map pain sensitivity was a beauty) Envelope of function would include waiting until you have recovered from meniscal surgery before riding your bike. Unfortunately orthopods are usually structural engineers with a God complex and once they take the suture out of your arthroscope holes they assume you are 100% cured. When you have an effusion in your knee which degrades your cartilage and inhibits your quads, sending you back out on the bike to do what you feel you can handle is a recipe for disaster.

 

Unfortunately most patients don't want to hear any of this stuff, they see AFL/NRL players returning to sport at a week post-scope and want to know why they can't ride at 4 weeks, end up tretament shopping when if they listened to the first voice of reason they would arrive at the same destination

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Interesting that this comes up, I re-read Dye's paper you are quoting last month. (his early one where he scoped his own knee with no anaesthetic to map pain sensitivity was a beauty) Envelope of function would include waiting until you have recovered from meniscal surgery before riding your bike. Unfortunately orthopods are usually structural engineers with a God complex and once they take the suture out of your arthroscope holes they assume you are 100% cured. When you have an effusion in your knee which degrades your cartilage and inhibits your quads, sending you back out on the bike to do what you feel you can handle is a recipe for disaster.

 

Unfortunately most patients don't want to hear any of this stuff, they see AFL/NRL players returning to sport at a week post-scope and want to know why they can't ride at 4 weeks, end up tretament shopping when if they listened to the first voice of reason they would arrive at the same destination

 

This is one instance where I will reply directly.

 

100% correct Parky. Why the Hell don't OS's get it? You can't expect patients to get it - they go to an expert to get the best advice, and should not have to become a knee expert themselves.

 

Believe me, if my OS had said stay off your bike etc for 8 weeks, I'd have done it. But he told me to let rip.

 

That Dye paper is a beauty (I was going to get to that). It revealed cartilage has no nerves, so does not cause pain directly. But it protects the bone from load, and bones do feel pain (think of the cartilage as the shock-absorbers of your knees), And there are other structures in the knee which REALLY feel pain (e.g. synovial lining) and pain in these can be triggered by biochemical changes in the knee.

 

I was going to do a separate chapter on surgeon (treatment) shopping but will cover it briefly now.

 

During my travels, I met numerous people who’d had knee surgeries for various things. Some thought my OS was terrible, others thought he was a genius. Many in our town think they have to go to the top guy in Sydney or Brisbane, and I talked to a large enough sample of them who had bad results with the top guys to realise knee surgery is a complete lottery.

 

The knee is probably the most complex joint in your body, and you should only have someone open it up or punch holes in it if all other options have failed, especially for cartilage issues.

 

And given cartilage is the shock absorber of your knee, think long and hard before getting any of it taken out. This is especially true of the dreaded chondromalacia shave where they ‘tidy up’ the cartilage on the back of the kneecap. For many people, this makes their symptoms worse. There is plenty of evidence you can heal that cartilage if you follow some of the methods I’ll talk about in later chapters.

 

As for treatment shopping beyond OS's, when you get to the level of pain and dis-function I did, you become desperate and will try all avenues. And thank God I did, because eventually I got enough information to figure things out for myself. I've got several others avenues I tried which I want to cover in a later chapter.

Edited by ComfortablyNumb

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What Ails Ye?

Below is a list of the symptoms and treatments for the four things that were going on (or nearly so for CRPS) in my knees. This is not an exhaustive list, but covers the key things I experienced myself, and learned from reading and talking to others.

 

Symptoms%20Treatments_zpsb054jftu.jpg

 

Next up, how did I get into this situation?

Edited by ComfortablyNumb
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Next up, how did I get into this situation?

I admittedly have skim read a lot of the posts, but if asked this question, id say:

 

Traumatic knee injuries in the past

Surgery

Came back with too much too quick (under advice of specialists)

Set up chronic irritation and pain issues

 

 

Solution proposed:

 

Do less

Accept limited rom and ability for longer thann would like

If something irritates it, stop, rest, and do less next time

 

 

Lessons learnt:

 

Athletes are prone to try and come back to pre injury/surgery levels too quickly

Some generic conventional solutions by physios etc are not suitable for athletes

Taking responsibility and initiative around your own recovery is vital

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Lessons learnt:

 

Athletes are prone to try and come back to pre injury/surgery levels too quickly

Some generic conventional solutions by physios etc are not suitable for athletes

Taking responsibility and initiative around your own recovery is vital

 

 

Agree with 1.

Disagree with 2. Conventional solutions for patello-femoral pain work effectively for athletes especially. Osteo-arthritis is limited by the condition of the cartilage and can be a long slow haul, CRPS is uncommon and most musculoskeletal and sports physios are out of their depth (I know I am, I refer mine on to Physios with special skill and experience in this area)

Agree with 3. However sometimes the "athlete" is their own worst enemy and will not listen to advice if it involves modifying or reducing activity level.

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Going North of the Wall

 

Below is a chart which outlines how I think my knees got into such a dysfunctional state.

 

I’m hearing readers say I got to this point due to pre-existing injuries, coming back from surgery too quickly, and that current physio treatments for PFPS are effective.

 

The first two points are undoubtedly true, but not the full story. The third point about physio treatments for PFPS is partly true - when cartilage damage is the main cause of your pain.

 

But, once you lose tissue homeostasis, the standard physio/medico treatments will likely make you worse, because unless carefully managed (which is impossible without having your medico come and live with you), they will be treatments that have you operating well outside your now much smaller envelope of function (e.g. full body weight single leg squats, seated leg extensions, single-leg deadlifts, hip-hitches).

 

Developing%20amp%20Envelopes%20of%20Func

 

The problem I see is medicos failing to distinguish between cartilage damage (chondromalacia patella) and loss of tissue homeostasis – very different things, though the former can lead to the later. The table in my previous post outlined the difference in symptoms.

 

The conventional solutions for chondromalacia patella may well be effective for athletes. But the conventional solutions for chondromalacia patella will make someone with loss of tissue homeostasis worse.

 

There are also some other causative factors I’ve suggested in the first two boxes above which I want to briefly outline. I believe most of my problems came not from running as everyone seems to expect, but from cycling:

 

Low leg musculature – as I’ve said before, I have chicken legs and believe some of the bike training I was prescribed failed to account for this. Low leg musculature likely means your joints are taking more load. I’ve talked to coaches who modify their client’s program based on their physique, and particularly note the care needed with small athletes.

 

Training intensity – my training program had a lot of rides prescribed in the 50-70% HR range (119-146). I’m guessing I did most of it closer to 70% as I trained alone and was not good at monitoring effort (even when wearing a HR monitor, I’d forget to look at it and just ride to feel).

 

Training load – windtrainer sets had a lot of big-gear work and gasping for air sessions. These improved my cycling massively, but put a lot of load on skinny legs and already ropey knee joints.

 

Sub-zero temperatures – when I first got my program, I nearly fell over because it said 1.5-2hr rides in the morning before work, which often meant cycling in -7ºC.

 

Add to this my winter cycling gear was not ideal, and my knees copped a lot of freezing cold exposure. If I’d had a decent amount of meat on my legs, it may not have mattered, but I didn’t.

 

Strange knee pain treatments – raw eggs, applied kinesiologists, and iron tablets are not smart ideas for sore knees (though gelatine may have some merit). The obvious chondromalacia patella symptoms likely required serious rest and rehabilitation, not taking strange supplements and cracking on.

 

Lack of rest after training – too often I’d finish a big weekend session and after a quick meal start working in the garden with chainsaw, mower and ute. Not a good idea once you are the wrong side of 40.

 

Sedentary job – I reckon this is a major one trainers and coaches under-play. If your triathlete client has a physical outdoor job, their legs, joints and balancing muscles will be much better for it. Sedentary job clients need more strengthening and balancing exercises on their legs (e.g. deadlifts, single leg deadlifts, hip and glute exercises), not just their core (situps and pushups).

 

On-line coaching – I don’t think this works for me. I’m not the type of client who’d be on the phone every night. I’d just do the program set regardless of how I felt. I’ve since had a discussion with another top coach who said he refused to coach on-line for this very reason, especially long-course athletes. His view was that unless he could eyeball them at least once a week, it was too risky especially for older athletes.

Also, there is no incentive for a coach you are paying to give you 2-3 months off because they don’t get paid. In hindsight, taking 2-3 months off every year instead of relentlessly getting a new program each month would have been smarter. By ‘off’ I don’t mean doing nothing, but something unstructured and very low-level such as regular walking, easy swimming and gym work.

 

Going back to the charts above, once your envelope of function has shrunken massively due to loss of tissue homeostasis, you are no longer in the realm of standard medico treatments for chondromalacia patella. You are in a far more fragile world where in all likelihood, you are going to have to work it out on your own.

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It seems my "witch doctor" isn't too far off with my treatment, which seems to be working. Three previous rehab programs had me doing work, which according to the above was "outside the envelope". Nothing was working. My new guy has me doing low intensity isometrics with no flexion in the knee, easy cycling, walking but no running, and short duration wall squats with about 25 degree knee bend. I can feel the muscles working, but not too hard, and coupled with the accupuncture, in 3 months it's the first time I've actually been moving forward.

 

I'm happy. :)

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It seems my "witch doctor" isn't too far off with my treatment, which seems to be working. Three previous rehab programs had me doing work, which according to the above was "outside the envelope". Nothing was working. My new guy has me doing low intensity isometrics with no flexion in the knee, easy cycling, walking but no running, and short duration wall squats with about 25 degree knee bend. I can feel the muscles working, but not too hard, and coupled with the accupuncture, in 3 months it's the first time I've actually been moving forward.

 

I'm happy. :)

 

Yup - more on acupuncture in a future chapter.

 

What species does your witch doctor go by? (e.g. physiotherapist? Chinese medicine? Herbalist? Naturopath? etc)

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It may seem picky, but chondromalacia patella is rarely used as a diagnosis in modern sports medicine. It was 30 years ago. It specifies that there is cartilage damage on the back surface of the patella and makes this the diagnosis and cause of symptoms. There are thousands of people running around with horrible looking patellas on xray with no symptoms, and some with horrible pain but pristine kneecaps.

 

In your table above i would substitute Chondromalacia with Patellofemoral Pain Syndrome. The source of pain in this column may be bone, or more likely synovium, synovial plica or fat pad if you want to ascribe a structure to the category. The tissue homeostasis name is Dye's way of saying tissue overload. Envelope of function= do what doesn't hurt. Massive overcomplication in my opinion. The Tissue homeostasis column includes symptoms I would describe as severe osteo-arthritis of the PFJ as well as CRPS.

 

I assume the graphics/tables are your own work? I would be interested to hear from an expert in CRPS but would be very surprised if pinning a cause to it was as cut and dried as your red box. As far as I know, there is no known reason why it develops and it is pretty much a lottery, with trauma, minor injury, surgery all as a precursor. You may have developed it just as a result of the arthroscopy alone with or without any rehab afterwards.

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Chinese Medicine. He's been in the accupuncture & massage game for about 30 years now, and also knows what sportspeople go through firsthand (captained the Aus baseball team at Seoul).

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I'm getting drawn in here, but this is a really interesting response Parky

 

It may seem picky, but chondromalacia patella is rarely used as a diagnosis in modern sports medicine. It was 30 years ago. It specifies that there is cartilage damage on the back surface of the patella and makes this the diagnosis and cause of symptoms. There are thousands of people running around with horrible looking patellas on xray with no symptoms, and some with horrible pain but pristine kneecaps.

 

In your table above i would substitute Chondromalacia with Patellofemoral Pain Syndrome. The source of pain in this column may be bone, or more likely synovium, synovial plica or fat pad if you want to ascribe a structure to the category. The tissue homeostasis name is Dye's way of saying tissue overload. Envelope of function= do what doesn't hurt. Massive overcomplication in my opinion. The Tissue homeostasis column includes symptoms I would describe as severe osteo-arthritis of the PFJ as well as CRPS.

 

I assume the graphics/tables are your own work? I would be interested to hear from an expert in CRPS but would be very surprised if pinning a cause to it was as cut and dried as your red box. As far as I know, there is no known reason why it develops and it is pretty much a lottery, with trauma, minor injury, surgery all as a precursor. You may have developed it just as a result of the arthroscopy alone with or without any rehab afterwards.

 

Agree with your first para entirely - though C-P is the term both Sports Drs used. But I do wonder if cartilage damage on back of kneecap pre-disposes you to loss of tissue homeostasis and/or CRPS?

 

Also agree with your second para, and it may well be that symptoms of tissue homeostasis loss are same as oesto-arthritis and CRPS. I think pre-CRPS is part of my pain, but not so sure about O-A as my xrays say good bone separation, but damage to cartilage on back on kneecap (maybe that also counts as O-A)?

 

Tables all my own, graphics adapted from Dye & Kelsey (the later I think took his from Dye). I did not really have full-blown CRPS according to the pain specialist, but a sort of pre-CRPS condition. And I agree, it could have all been down to the surgery, but the exercises I was prescribed after definitely made things worse.

 

Next chapter will be about what I have done that seems to work.

 

 

Chinese Medicine. He's been in the accupuncture & massage game for about 30 years now, and also knows what sportspeople go through firsthand (captained the Aus baseball team at Seoul).

 

Interesting. I thought acupuncture was complete frog-sh*t until I gave it a whirl at a free trial day. I'm still a bit iffy, but my fortnightly sessions with this guy (also a Chinese Medicine person) have definitely been doing something positive and I don't think it is the placebo effect, because I'm so skeptical I reckon I'm immune to that.

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I assume the graphics/tables are your own work? I would be interested to hear from an expert in CRPS but would be very surprised if pinning a cause to it was as cut and dried as your red box. As far as I know, there is no known reason why it develops and it is pretty much a lottery, with trauma, minor injury, surgery all as a precursor. You may have developed it just as a result of the arthroscopy alone with or without any rehab afterwards.

Agree. I'm no CRPS expert either (we see a bit of pain stuff but it's certainly not my area). Most common presentation is immediately on removal of plaster cast for a wrist fracture. There is no inappropriate training load/rehab etc at play there.

 

As a side note I used to wonder whether if you were a health care professional who was educated about the nature and treatment of CRPS, could you still get it? Still not sure on that one

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Damage to cartilage = oa at patellofemoral joint

Good joint separation on X-ray between tibia and femur= most cartilage likely remaining but does not asses focal spots or deficits well. Suggests unlikely oa is present here but not all the necessary information.

 

Crps whether it is full blown or partial significantly reduces a tissues capacity to withstand any stimulus. It seems to follow vascular distribution more than neural. It's worth looking at the term allodynia. On a physiological level is would magnify you symptoms and cause some to be experienced even before structural damage occurs and would fit into part of your homeostasis.

 

I've seen a few CRPS cases and many seem to be from crush injuries strangely

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Physio took one look at the knee and swelling today and said straight to the OS for his opinion, too much swelling for tapping, in the context of all the info on here, it will be interesting to see what he says.

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The Tissue homeostasis column includes symptoms I would describe as severe osteo-arthritis of the PFJ as well as CRPS.

 

And there is the crux of what led me on such a long search for answers, as my OS when he went in to trim the meniscus, the MRIs on both knees and the subsequent x-ray of both knees revealed no severe O-A, other than the damage to the back of the kneecap cartilage (C-P).

 

I recall the OS saying everything else in my L knee looked "really good".

 

There are people running about bone-on-bone who appear to have far less pain and loss of function than me? I get the impression from them, their pain is mostly an issue when they push things (e.g. go running) where as mine is almost constant and made worse by the most trivial everyday activity.

 

 

It's worth looking at the term allodynia.

 

Will look into it.

 

Edited by ComfortablyNumb

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Getting Back to Kings Landing (Without Becoming Fat)

 

Having figured out the conventional wisdom (leg muscle strengthening) was not working, I had to find another way.

As outlined in the Kindred Spirits chapter, I found plenty of clues from others who had a similar story and symptoms, though not all were out of the woods yet.

 

I purchased two more e-books – one by Doug Kelsey ‘The 90 Day Knee Arthritis Remedy’ and Paul Ingrahams ‘Patellofemoral Pain Syndrome’. Both were very good in explaining how difficult it was, and how patient you had to be coming back from PFPS. Kelsey prescribes specific exercises with gradation, but I found even those too much for my knees. Ingrahams’ approach is more like Richard Bedards book – an almost impossible change in lifestyle for 3 months, before gradually adding activities and exercises over a 6-12 month period. My approach was somewhere inbetween the two.

 

I was over two years into the journey, we had sold our house with the massive but now unmanageable garden and were living in a tiny dingy rented two bedroom flat, with not enough room to swing a cat – our daughters’ cat got lucky.

 

Before the move, I’d long since given up cycling and running, and even kicking while swimming was starting to look highly suspect. I’d taken to walking for 45-60mins at a fair pace, but that was too much. At the new flat, there was a little 15min walking circuit I would do every morning with my lovely long-suffering wife who listened to me bang on about my knees for many of the walks. It had a short sharp hill of about 50m in it which at first I hit hard to get a little aerobic action happening, but eventually just had to do it slowly.

 

One positive to come out of my tri training program was lots of pull and band swimming, so I did nearly all swimming like that to limit kicking. I’d swim about 3x/week, two 30min sessions and a 60min session. One of these was a ‘bang for buck’ workout given to me by Tranny Fluro2au and it was the only ‘hard’ session I got all week.

 

Several times I tried getting back on the bike and for a few weeks, thought I was getting on top of the pain, but then went backwards again. So my exercise regime consisted of short walks each morning, 3 swims/week and some upper body weights in the gym.

 

I was still obsessed with getting back to triathlon, maintaining some fitness/strength, and not becoming a fat bastard. My racing weight was about 63kg when training 6-14hrs/week (average about 9hrs, of which at least 5 was on the bike), but was now down to 5 hours of activity which I’d hardly even describe as exercise except for the swims.

 

Time to address the diet. When doing Tris, I’d eat anything including a fair few Powerbars and gels while training. I cut out bread almost entirely, switched to gluten-free pasta, reduced sugar and alcohol intake by around half. My diet became a bit more Paleo (fish, eggs, chicken, beef, lamb, veges) but still some non-paleo things (brown rice and quinoa, oats, gluten-free Wheatbix and small amounts of other cereals), a bit of dark chocolate after dinner.

 

Life became very boring and insular. My exercise regime seemed pathetic, my diet was boring, we were in the middle of a cold winter in a dingy little flat – first world problems I know – but it took a toll.

 

The knees still burned and ached during the waking hours, I spent a lot of time on the couch watching TV. When October rolled around and the trout fishing season started, I was able to get out into the bush a bit, but I had to be careful walking on boggy and uneven ground.

 

Surprisingly, I found I could wander around fly-fishing for 4-5 hours often over some quite difficult terrain and my knees did not get worse. But if I even looked at a bike for 5 minutes I was in trouble. I recall in February going to NZ to fish, and spending one long day walking over large rocks, having to balance all the time and that seemed OK. But back at a desk, I’d soon regress. No doubt the mental difference between the distraction of a pristine trout stream and scanning for fish versus being stuck in an office had something to do with it.

 

I did manage to stabilise my weight at 64-65kg with this regime however.

 

As my mental health worsened, I bit the bullet and visited a Psychologist. He had me complete 3 questionnaires which revealed moderate to severe depression, anxiety (chronic pain will do that), but (to his surprise) normal for stress. We discussed my early life and he said “why didn’t you come and see me 35 years ago”! (at the age of 15 when I was ripped away from my happy little country High School and sent to an all-male boarding school with a bunch of f*cked up bureaucrat and politicians kids who gave me Hell being so small. I recall one, a politicians’ son who would become a politician himself making me stand arms out, palms up and hold heavy books in each hand. He’d punch me in the stomach every time my arms started to drop).

 

But meh, you cop a few hidings, learn to stand your ground and fight back verbally and physically. It toughens you up and I didn’t think it would have a lasting effect.

 

He taught me how to (sort of) meditate and relax, and also said “you can’t fight nature” referring to my knees. Basically the message was forget triathlon and find other things. He wanted me to take up drawing, but I had little interest. After about 5 visits which were all pretty much the same, I figured I’d learned enough with the meditation (not very good at it) and moved on.

 

Some variation in the exercise regime was needed as it was getting boring. For a few months I enlisted the help of a trainer (online) who have me a host of upper and lower body and core exercises to do. Upper and core were fine, but the lower (single leg squats, single leg deadlifts at bodyweight etc.) were too much. I was doing 3-4x 15 reps of these, way too many for my reduced envelope of function.

 

I’ve since learned 3x 5-6 reps may have been sustainable, but I discovered most experts have so little experience with people whose knees have sunk to such a fragile state that their regimes are too much load and frequency. I expect most people who sink to that level just curl up in a hole and die, but I was determined to find at least a partial solution and regain some life. On the positive side, I learned some great exercises that I could do without pain.

 

To break the boredom, I devised a 30min weights-boxing circuit that consisted of speedball and bag work (no dancing like a butterfly), upper body weights and sideways walking with a thera-band to work the hips and glutes. The circuit got my HR as high as 150 during the boxing segments.

 

So I walked for 20-30mins every morning before work, and either swam, did the little gym circuit, walked on a treadmill for another 15-20mins, or did upper body weights at lunch/on weekends. I did this for about 12 months.

 

Between then and now, I’ve had up to a 90% improvement in the knee pain level, and a 50% improvement in function. However, it can fluctuate and go backwards at times.

 

I had a significant improvement during the past 3 months, where I’ve been able to introduce deadlifts (4x6@up to 40kg), single leg deadlifts (4x6 with 3kg dumbbell in each hand) and spinbike (2x/week for 20mins with 4x1min hard where HR gets to 150-160). The endorphin hit is great and has massively improved the mental side of things. But my knees are still highly suspect.

 

Next chapter – what worked, what didn’t, some weird things.

Edited by ComfortablyNumb

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The Bad, The Good, The Weird (or for Kenneth: Joffrey, Tyrion, and Melisandre).

 

Below is a summary of some of the various treatments I was prescribed, or blundered upon, classified by their effectiveness.

Remember, I think my main problem was loss of tissue homeostasis, stemming from existing patella cartilage damage, meniscus surgery, and inappropriate advice about returning to training after surgery.

 

None of my experiments were very well controlled, as I was often changing several things at once, so it is a bit hard to be definitive about some things – but some were very obvious.

 

The Bad

  • Mainstream full body weight leg muscle strengthening exercises – too much load and frequency, so exceeded my envelope of function
  • More surgery – even though I didn’t have more, and several experts suggested patella shaving, patella drilling or lateral release, eventually my OS made the wise decision that more surgery probably wasn’t going to help and may make me worse. I’ve come across a lot of people who end up on the knee surgery treadmill
  • Anti-inflammatories – are a short-term solution only and can cause long-term problems
  • Stairs
  • Knee taping
  • Crouching, squatting, bending forward too much
  • Icing – I had no swelling, but iced to relieve the pain. I was doing this a lot before the real chronic pain struck. I’ve since read that icing can cause CRPS
  • Glucosamine - did nothing
  • Iron - did nothing
  • Body awareness – one thing triathlon can do is make you hyper-aware and paranoid of every little ache and pain in your body. You only have to look at all the injury threads on Trannys to get that. I recall my OS saying he treated one of our top pro-triathletes and had never met such a body-obsessed nutcase who, while he was treating one injury, told him at length about dozens of other problems (bit like my story here really!). You can focus on things too much, until they do become a problem, or become harder to solve. Triathlon will bring this out in spades due to the A-type personalities it attracts.

The Good

  • Becoming OCD about monitoring your knees, figuring out what makes them worse, what makes them better, and sticking to that, while gradually edging up your activity levels. For many, this will mean forget triathlon for the foreseeable future
  • Walking
  • Stretching
  • TENS machine – my physio got me onto this and it was a Godsend for reducing the constant pain. I suspect it was working on the near-CRPS component of my pain and helping re-wire neural pathways.
  • Meditation – good for pain control
  • Hoka shoes – they look ridiculous, but the difference in knee impact even when walking it noticeable and they help you get gentle knee movement without more damage
  • Topical ointments (Lawang oil, emu oil, Tui cream) – I think these work by relaxing the muscles/joint. There is also some evidence the menthol in these helps distract you from pain and has positive neuroplasticity impacts
  • Stretching – as for above
  • Hot baths/showers – as for above
  • Fish oil - not sure about this one, but I continue to take it
  • Losing the triathlon obsession – this took almost 3 years, but once I started getting some decent pain reduction, that became far more important than my need to race again. In fact, it made me realise how stupidly obsessed I’d become with the sport, and losing that allowed me to re-connect more with family and other interests. My whole system slowed down and my decision making abilities improved. I think part of this is overcoming the exercise endorphin addiction. Some endorphins are good, but I think I was using triathlon to plaster over other cracks in my life, and got to the stage where the excessive exercise was actually making those cracks deeper.
  • PRP injections – I’m sure these helped, but were not the silver bullet answer
  • Fly-fishing – the gentle walking with frequent stopping seemed to agree with my knees, as did being away from a desk, being in a nice outdoor environment, and wading in cool water

The Weird

I also started doing the BrainHQ exercises (featured in Todd Sampsons ‘Redesign My Brain’ show on ABC) - http://www.brainhq.com/# - which I found helped sharpen my skills at work and decision making which had been eroded by the mental problems associated with chronic pain.

  • Anti-fungal medication – this one is strange, but over the years due to the disgusting indoor pool I swim in over winter, and during summer having wet feet a lot fishing, I developed some pretty nasty toenail infections. The GPs will first tell you to try Loceryl which I did for a year. You may as well just burn two $50s. Eventually, he put me onto the anti-fungal Tinasil for 3 months which worked well, and also coincided with a big improvement in knee pain and function. I’d been asking him for over a year if the fungus could have got into my knee joints and he said no – because the pain sure felt like the joint was chronically infected/inflamed. Dr Google says that usually only happens in immune-supressed people. But the coincidence has me wondering.
  • The Applied Kinesiologist – take 6x $50s and burn them this time…..except, in a way even he may not be aware of, the bizarre methods of putting different foods in your mouth while testing your arm strength could be in a similar arena to the neuroplasticity/CNS rewiring/placebo effects. If you believe hard enough that your body can’t handle certain foods, and needs certain supplements, perhaps your CNS will re-wire by following his advice, and the problem will resolve. It did not for me - too much scientific training and witchdoctor skepticism. And the danger was, I was still doing physical things that sent my knees backwards.
  • Gelatine – the coach had initially prescribed this when I was having some knee pain, but before all Hell broke loose. But only 1-2 teaspoons/day of the supermarket stuff. The acupuncturist gave me a big bag of high grade gelatine and told me to take 2 tablespoons a day. I don’t know if it helped, but this coincided with some good pain improvements
  • Backballs – these are self-massaging balls provided by my physio for your back which you lie on and they massage either side of the spine. I found there were some spots high up in my back which when massaged resulted in a noticeable reduction in knee pain. This could have been related to CRPS and changes in ganglia in the spine.

I'm done.

 

It seems doubtful I'll ever race Tris again, but the goal is to be able to do 3x 1hr moderate rides/week with my wife and daughter (especially as I bought the Mrs a nice new MTB for her birthday....an excuse for me to get one eventually).

Edited by ComfortablyNumb
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Some good reflections there in the 'good' section.

 

I wouldn't worry about the 'bad' too much, things have been sorted out there.

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Have a look at 4 Corners tonight - http://www.abc.net.au/4corners/stories/2015/09/24/4318883.htm

 

Over-prescribed surgeries, and knee 'clean outs/tidy ups' are one of them (not that mine was of that variety - I had to get the loose bit of meniscus removed as it was chaffing the cartilage on the end of the femur).

 

But I know others who've had clean outs, shaves, lateral releases and knee-cap re-alignments and ended up no better or worse.

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Blood test and fluid out of the knee test revealed....nothing. No infection, no gout, OS has no idea. MRI looks good. Acupuncture and crushed up bark (Chinese medicine that looks like and tastes like crushed up tree bark) haven't helped. Anti-inflamms allow me to walk without crutches but don't want to take them any longer than 3-4 days so go off them and about 4 days later I am back on the crutches.

 

Rheumatologist next up this week, if he can't figure it out, then keyhole to take a tissue sample.

 

Would be nice to get some answers instead of paying good money to be told that the 'expert' has no idea.

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Have a look at 4 Corners tonight - http://www.abc.net.au/4corners/stories/2015/09/24/4318883.htm

 

Over-prescribed surgeries, and knee 'clean outs/tidy ups' are one of them (not that mine was of that variety - I had to get the loose bit of meniscus removed as it was chaffing the cartilage on the end of the femur).

 

But I know others who've had clean outs, shaves, lateral releases and knee-cap re-alignments and ended up no better or worse.

 

Yep, very interesting topic that John Orchard has been writing about for ages in his Dr J column in one of the trade mags. Arthroscopy for knee degeneration, GP acupuncture, PRP injections all targets of scrutiny. Lots of Drs making tidy coin on unjustifiable treatments on the public purse.

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Blood test and fluid out of the knee test revealed....nothing. No infection, no gout, OS has no idea. MRI looks good. Acupuncture and crushed up bark (Chinese medicine that looks like and tastes like crushed up tree bark) haven't helped. Anti-inflamms allow me to walk without crutches but don't want to take them any longer than 3-4 days so go off them and about 4 days later I am back on the crutches.

 

Rheumatologist next up this week, if he can't figure it out, then keyhole to take a tissue sample.

 

Would be nice to get some answers instead of paying good money to be told that the 'expert' has no idea.

 

Yes it's frustrating, but that is the truth of the matter. Knees are complex. If they start cutting, confirm it is just for a look and that they don't start snipping bits out.

 

I'd rather go to an OS who has the balls to admit they don't know than one who shoots from the hip, plays God and pulls out the scalpel. In the short term it might be annoying as you just want to get back to racing, but in the long term you may miss a season or two, but one day race again. Once they start taking bits out, you are on a slippery slope.

 

Have you asked him about inflammation of the synovial lining? (which as I read it can be a symptom of the loss of tissue homeostasis which I cover in my novel above).

 

Apparently there are bone scans which can detect more than MRIs.

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It's like a GOT train wreck in the knee department. I couldn't look away. Mainly because I have a war torn dodgy right knee which has nothing on your situation. It took me a while to get through most of your posts but now thanks to you and Parkside I know more about the varying knee conditions.

Thanks for sharing and good luck finding a result.

Mr G at the Blackwater

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