He also mentions finding other success stories: “Ted” from California, Luis and his wife from Bolivia, and Terry42 from KneeGeeks.
And he talks about three other big influences (you’ll find all three on this blog; just do a search):
(1) Scott Dye and his framework for understanding knee pain in terms of “tissue homeostasis” and “envelope of function”
(2) Paul Ingraham, a really cool writer, hard-nosed skeptic, and myth buster
(3) Doug Kelsey, an Austin, Texas, physical therapist whose thinking is like a breath of fresh air in a stuffy attic
Instead of condensing what he wrote about Dye and the others, I’d like to focus on a diagnosis he said he received. I think it’s useful partly because this was NOT my diagnosis (nor do I think I had it, based on the symptom set), but I bet a lot of other knee pain sufferers would find it relevant.
The condition is called “complex regional pain syndrome,” which sounds like phantom pain at first – but it definitely is not. So here’s TriAgain (again):
“Some posts on KneeGeeks suggested I should research CRPS.
CRPS stands for Complex Regional Pain Syndrome. It sounds like some 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.
The 13-year-old daughter of one of my board members 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 two weeks on a ketamine drip (nasty stuff) and had mirror therapy and other interventions to rewire her neural pathways. It was a 12-month recovery process.
Full-blown CRPS has 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 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 three in each knee and this guy only charged $110/pop. 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.
* 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.
* One other treatment for CRPS is a controlled and graduated return to activity to rewire 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’?).
The take-home message: the whole CRPS experience led me to some excellent work on central nervous system rewiring techniques, and while not the entire answer, had a host of benefits.
Having figured out the conventional wisdom (leg muscle strengthening) was not working, I had to find another way.
Before the move, I’d long since given up cycling and running, and even kicking while swimming was starting to look highly suspect. At the new flat, there was a little 15 min walking circuit I would do every morning.
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. 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 I walked for 20-30 mins every morning before work, and either swam, did the little gym circuit, walked on a treadmill for another 15-20 mins, 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.”
End Part II