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
All,
ReplyDeleteThanks so much to Richard and everyone for the time and thought you have put into sharing your stories and insights. It has been hugely helpful for me as I have been navigating my own PFPS journey. I have read Richard's book and many of the posts here after struggling with not making progress with the usual PT and Orthopedist guidance.
I have had intensive PFPS for 10 months now that has gotten progressively worse despite stopping running - the usual story of 7 months of PT with heavy joint loading quad exercises, orthopedists who either say there is nothing wrong in MRI or its maltracking, etc.
I have a few aspects of my experience that I haven't seen mentioned in the posts and stories so wanted to raise them here in case others have had experience or if I missed posts. They are:
1. I seem to have concurrent IT Band syndrome and in fact the most intense symptoms began as more classic IT Band issue (a sudden intense pain on side of knee that spread along side of leg). The MRI showed IT Band inflammation and one of the Orthopedists I saw explained all my symptoms as caused by IT Band inlammation (another said it was both concurrently - though said it was caused by maltracking). At times I continue to get burning on the side of the knee even when my relative rest approach has calmed the pain on the kneecap itself.
Has anyone else encountered this and have any thoughts about approach? I have read that it is very rare to have IT Band syndrome and PFPS together so was interested in others' experience.
2. One of the othopedists I saw explained it as maltracking due to my trochlear groove being shallow and patella having a slightly imbalanced shape. He stressed the solution as "relearning to walk with your glutes" and said that quad strengthening had no impact. From my learning since then I have put this in the general structuralist explanation but was wondering if others have had the glute emphasis and if there is any truth to it (I generally try to engage my glutes while walking as it seems harmless to try).
3. Pool Walking - Based on some posts I tried walking in the shallow end of a pool for 15 min as part of my rest/light movement approach but found that the pain and burning was worse than normal flat walking after. Should I be doing it with flotation in the deep end with no strike on the ground?
4. Voltaren Gel - this stuff has been hugely powerful for me. I put it on and within an hour all pain and stiffness is gone for about 5-6 hours (it then comes back normally). I am generally not using it to Richard's point that I want to be carefully reading the pain data my body is sending me, but I havent seen others have such a strong reaction to it so was wondering if it might signal something.
5. My left knee is usually worse and I often get burning in my left hip also when it flares up. I assume its result of some compensation for the knee pain, but would be interested in others experience (and if the hip may possibly be a culprit rather than victim)
6. I have Crohn's Disease also which commonly leads to rheumatoid arthritis (both systemic inflammation). I have wondered if that may be contributing to the knees, though oral anti-inflammatories haven't really had any impact (unlike the topical Voltaren).
My pain is down significantly over the past couple of weeks as I have really engaged in the relative rest and light movement (aside from the ill-fated pool walking set back) and am focusing on being patient.
Huge thanks again to everyone and look forward to your thoughts.
Hi Oliver,
ReplyDeleteI am still in the very early stages of recovery with my second bout of this awfulness. I haven't posted my full story here yet but maybe will, once I improve some. I have seen some pain reduction recently with keeping to 6000 steps per day and eliminating most but not all knee stressors (I still have to drive to work, do 8 stairs a day, and make mistakes (most recently trying to wear Hoka shoes which caused a big flare-up Monday but thankfully subsided.))
Anyway, I cant comment on IT band issues or Crohnes since those are not things I have problems with. However, I did try pool walking on my first go round and found it did not help and probably set me back. I did it for a while as per my PTs suggestion and I remember someone at the Y noting how painful I looked. Richard in his book tried 10 min of pool work and was set back. Someone else on here has found pool work in the deep end helpful.. I can't remember her name but she did progress from there to land work and cycling (until a big setback). Unless someone else here remembers you will have to read back through all the comments (which takes a while). If you find out what she did let me know...I don't think it was clear to me what exactly she did in the deep end.
I wish I had such a strong reaction to Voltaren gel! I use it some but am also on an oral anti-inflammatory. You will find different opinions on anti-inflammatory use on here. Personally I just need that level of pain reduction to exist, but hope to be able to either lower dose or drop entirely as soon as possible.
My PT always has told me to tighten my glutes when doing squats (not that I can do those now) to help take some pressure off the quads. Also someone once said engaging them while walking can help, and I have at times noticed this to be true.
Heather
Heather, thanks so much for these thoughts and I hope you are making okay progress with the second bout of this. Its a really tough, slow process. I had a really good week last week and was increasing my steps and then have had a big pain spike over the past two days. I can't quite figure out what caused it though I think it is either overdoing it in the number of steps or going up and down and incline ramp for the first time in a while. Interestingly this pain spike was mostly on the side of my knees, legs and hip where the IT Band is while the front of knees where I have had much of my pain over the recent months have been solid. This is such a strange experience that it can be fascinating when it is not so frustrating and agonizing!!
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