Over a year and frustrated

[Userhere123]

Hello! Thanks for your reply and I’m sorry about your struggles. Here is an update on my condition.
So, the flare subsided after three days, and then started to feel a bit better. Shortly after that I had 4 days where I truly thought the injection had helped, yet then went right back to how I was before that.
Currently, the right knee is more sore, ranging from a ‘full’ feeling with an inflamed feeling in the medial area, to a deep ache during flexing while weight bearing. The left knee (no injection) has slightly improved. This COULD be due to a new physio program I started at the end of January. Very conservative, and anything that hurts, even minimally, I say no to.
I am starting to believe that the key to recovery is having a good PT that understands the envelope of function (yes I agree with dr. Dye) and you as a patient need to learn lots about knee function and give lots of feedback. Do NOT blindly trust anyone!
If I take it easy, ice for 20 min 3times a day I can calm the right knee down again. Gentle yet short FAST walks seem ok (I still have to experiment on the length, I’m thinking start with 3 to 5 minutes, hoping to be able to try for 3 times a day, resting in between as a baseline)
The latest news is I have decided to take 2 months of work to tackle this problem head on and with as much dedication as I can. This will start in March, I have one week left of work to go. PT work right now involve foam rolling, straight leg exercises, some stretches and a wall squat of maybe 15 to 20%, with a band, light loading yet no pain.
I have a feeling it’s going to be a long journey....

Yup, that's right.  It is a long journey.  I thought I was going to have to live with it forever, but thankfully  I'm a lot better now after 7yrs.

After 2 previous attempts to do the short local triathlons over the past 2 seasons which ended with bad flares, it's 3rd time lucky as I did the local race with no major repercussions last weekend (took me 70mins, which is 12mins slower than my best when I was about 45 just before this knee nightmare started, but I'll take it given I've only done about 25% of the training I once did this past year).

Got 2nd place LOL! Not bad for a 56yo, and I was tussling with a 20-something year old, who only pipped me by 8 seconds (OK the really fast guy who would have beaten us both by 10mins got a flat tyre  ).  We exchanged places on the bike 4 times, and 2 times on the run, which made it the most fun race I've ever done.

TBH, I only went at about 90-95% intensity as I didn't want to kill myself, but it was a big step forward.  Still got a few knee tingles after, but nothing too drastic.

It took 7 years for you to get better?? Then it's going to be a very long journey for me.
I have been struggling with this for past 6 months and knee pain throughout the day and night.
What helps you in your case to get better? I am going to PT for past 4 months. Doing strengthening and stretching exercises. Started foam rolling 2 days back. Did 3 sessions of aggressive dry needling and one needling session for scar tissue in the same knee.  PT said I need a couple more dry needling sessions.
I don't know how to proceed further to get better. I get the burning pain right above the knee and lateral side. It burns whenever I bend the knee or stretch my legs straight. So it's difficult for me to sit down and lie down. It's 3 am here and am up because of the pain. I have to move around and sleep back again. I do ice my knee sometimes. Not everyday.
I don't need a magical thing to work on, but is would be great if I really know what's going on and what should be done. PT and the doctors also not sure and telling me to focus on strengthening.
Since I didn't injure anywhere, they say I got the pain and patella maltracking because of weak muscles. That causes some inflammation in my knee now.
I have even changed to a new proper fitting shoe now. I was wearing an unfitted shoe and walked with that for a month for 2to 3 miles a day. After that, the burning pain started. It's the same level of pain till today. It's been more than 6 months.
What should be the next best step to do?

[SuspectDevice]

Hello! Thanks for your reply and I’m sorry about your struggles. Here is an update on my condition.
So, the flare subsided after three days, and then started to feel a bit better. Shortly after that I had 4 days where I truly thought the injection had helped, yet then went right back to how I was before that.
Currently, the right knee is more sore, ranging from a ‘full’ feeling with an inflamed feeling in the medial area, to a deep ache during flexing while weight bearing. The left knee (no injection) has slightly improved. This COULD be due to a new physio program I started at the end of January. Very conservative, and anything that hurts, even minimally, I say no to.
I am starting to believe that the key to recovery is having a good PT that understands the envelope of function (yes I agree with dr. Dye) and you as a patient need to learn lots about knee function and give lots of feedback. Do NOT blindly trust anyone!
If I take it easy, ice for 20 min 3times a day I can calm the right knee down again. Gentle yet short FAST walks seem ok (I still have to experiment on the length, I’m thinking start with 3 to 5 minutes, hoping to be able to try for 3 times a day, resting in between as a baseline)
The latest news is I have decided to take 2 months of work to tackle this problem head on and with as much dedication as I can. This will start in March, I have one week left of work to go. PT work right now involve foam rolling, straight leg exercises, some stretches and a wall squat of maybe 15 to 20%, with a band, light loading yet no pain.
I have a feeling it’s going to be a long journey....

Yup, that's right.  It is a long journey.  I thought I was going to have to live with it forever, but thankfully  I'm a lot better now after 7yrs.

After 2 previous attempts to do the short local triathlons over the past 2 seasons which ended with bad flares, it's 3rd time lucky as I did the local race with no major repercussions last weekend (took me 70mins, which is 12mins slower than my best when I was about 45 just before this knee nightmare started, but I'll take it given I've only done about 25% of the training I once did this past year).

Got 2nd place LOL! Not bad for a 56yo, and I was tussling with a 20-something year old, who only pipped me by 8 seconds (OK the really fast guy who would have beaten us both by 10mins got a flat tyre  ).  We exchanged places on the bike 4 times, and 2 times on the run, which made it the most fun race I've ever done.

TBH, I only went at about 90-95% intensity as I didn't want to kill myself, but it was a big step forward.  Still got a few knee tingles after, but nothing too drastic.

It took 7 years for you to get better?? Then it's going to be a very long journey for me.
I have been struggling with this for past 6 months and knee pain throughout the day and night.
What helps you in your case to get better? I am going to PT for past 4 months. Doing strengthening and stretching exercises. Started foam rolling 2 days back. Did 3 sessions of aggressive dry needling and one needling session for scar tissue in the same knee.  PT said I need a couple more dry needling sessions.
I don't know how to proceed further to get better. I get the burning pain right above the knee and lateral side. It burns whenever I bend the knee or stretch my legs straight. So it's difficult for me to sit down and lie down. It's 3 am here and am up because of the pain. I have to move around and sleep back again. I do ice my knee sometimes. Not everyday.
I don't need a magical thing to work on, but is would be great if I really know what's going on and what should be done. PT and the doctors also not sure and telling me to focus on strengthening.
Since I didn't injure anywhere, they say I got the pain and patella maltracking because of weak muscles. That causes some inflammation in my knee now.
I have even changed to a new proper fitting shoe now. I was wearing an unfitted shoe and walked with that for a month for 2to 3 miles a day. After that, the burning pain started. It's the same level of pain till today. It's been more than 6 months.
What should be the next best step to do?

Yes, 7 years.  Re-read the personal message I sent you and you'll know why. 

Basically because:
1. I got bad advice from the experts esp re quad strengthening which only made things worse as it continued to overload my knee joints - my joints were the problem, not my quad muscles/VMO;
2. Because I was stupid and kept trying to return to my fitness program and overloaded my knees before the joints had settled.

But something you said above about the location of your pain & burning (above knee and lateral side) makes me wonder if what you have is different to PFPS?  My pain was directly under the kneecap, and moved about a bit, but definitely not above the knee or lateral.

Your pain has me wondering if your problem is a tight ilio-tibial band - which is a much easier issue to solve than PFPS (and I define true PFPS as Dr Dyes loss of tissue homeostasis = chronic inflammation of the synovial lining).

I had bad ilio-tibial band pain for about 2 months many years ago (before my PFPS) and the solution was rest and stretching the ITB band.  Once it has settled, strengthening the supporting muscles (glutes/hips/hammies/calves/core/lower back) is also recommended.

[Userhere123]

Hello! Thanks for your reply and I’m sorry about your struggles. Here is an update on my condition.
So, the flare subsided after three days, and then started to feel a bit better. Shortly after that I had 4 days where I truly thought the injection had helped, yet then went right back to how I was before that.
Currently, the right knee is more sore, ranging from a ‘full’ feeling with an inflamed feeling in the medial area, to a deep ache during flexing while weight bearing. The left knee (no injection) has slightly improved. This COULD be due to a new physio program I started at the end of January. Very conservative, and anything that hurts, even minimally, I say no to.
I am starting to believe that the key to recovery is having a good PT that understands the envelope of function (yes I agree with dr. Dye) and you as a patient need to learn lots about knee function and give lots of feedback. Do NOT blindly trust anyone!
If I take it easy, ice for 20 min 3times a day I can calm the right knee down again. Gentle yet short FAST walks seem ok (I still have to experiment on the length, I’m thinking start with 3 to 5 minutes, hoping to be able to try for 3 times a day, resting in between as a baseline)
The latest news is I have decided to take 2 months of work to tackle this problem head on and with as much dedication as I can. This will start in March, I have one week left of work to go. PT work right now involve foam rolling, straight leg exercises, some stretches and a wall squat of maybe 15 to 20%, with a band, light loading yet no pain.
I have a feeling it’s going to be a long journey....

Yup, that's right.  It is a long journey.  I thought I was going to have to live with it forever, but thankfully  I'm a lot better now after 7yrs.

After 2 previous attempts to do the short local triathlons over the past 2 seasons which ended with bad flares, it's 3rd time lucky as I did the local race with no major repercussions last weekend (took me 70mins, which is 12mins slower than my best when I was about 45 just before this knee nightmare started, but I'll take it given I've only done about 25% of the training I once did this past year).

Got 2nd place LOL! Not bad for a 56yo, and I was tussling with a 20-something year old, who only pipped me by 8 seconds (OK the really fast guy who would have beaten us both by 10mins got a flat tyre  ).  We exchanged places on the bike 4 times, and 2 times on the run, which made it the most fun race I've ever done.

TBH, I only went at about 90-95% intensity as I didn't want to kill myself, but it was a big step forward.  Still got a few knee tingles after, but nothing too drastic.

It took 7 years for you to get better?? Then it's going to be a very long journey for me.
I have been struggling with this for past 6 months and knee pain throughout the day and night.
What helps you in your case to get better? I am going to PT for past 4 months. Doing strengthening and stretching exercises. Started foam rolling 2 days back. Did 3 sessions of aggressive dry needling and one needling session for scar tissue in the same knee.  PT said I need a couple more dry needling sessions.
I don't know how to proceed further to get better. I get the burning pain right above the knee and lateral side. It burns whenever I bend the knee or stretch my legs straight. So it's difficult for me to sit down and lie down. It's 3 am here and am up because of the pain. I have to move around and sleep back again. I do ice my knee sometimes. Not everyday.
I don't need a magical thing to work on, but is would be great if I really know what's going on and what should be done. PT and the doctors also not sure and telling me to focus on strengthening.
Since I didn't injure anywhere, they say I got the pain and patella maltracking because of weak muscles. That causes some inflammation in my knee now.
I have even changed to a new proper fitting shoe now. I was wearing an unfitted shoe and walked with that for a month for 2to 3 miles a day. After that, the burning pain started. It's the same level of pain till today. It's been more than 6 months.
What should be the next best step to do?

Yes, 7 years.  Re-read the personal message I sent you and you'll know why. 

Basically because:
1. I got bad advice from the experts esp re quad strengthening which only made things worse as it continued to overload my knee joints - my joints were the problem, not my quad muscles/VMO;
2. Because I was stupid and kept trying to return to my fitness program and overloaded my knees before the joints had settled.

But something you said above about the location of your pain & burning (above knee and lateral side) makes me wonder if what you have is different to PFPS?  My pain was directly under the kneecap, and moved about a bit, but definitely not above the knee or lateral.

Your pain has me wondering if your problem is a tight ilio-tibial band - which is a much easier issue to solve than PFPS (and I define true PFPS as Dr Dyes loss of tissue homeostasis = chronic inflammation of the synovial lining).

I had bad ilio-tibial band pain for about 2 months many years ago (before my PFPS) and the solution was rest and stretching the ITB band.  Once it has settled, strengthening the supporting muscles (glutes/hips/hammies/calves/core/lower back) is also recommended.

Thank you. I really appreciate it.
Yeah, I have burning pain on top of the knee and the right side. (That too on top right).
I am having this burning pain in the same place for past 6 months. I had 2 MRI. MRI says it's Patella subluxation and patella alta. I don't know if anything related to IT band. Doctors didn't say anything about it. I am not sure though.
My pt says I have a very tight quad and they are making me work on it. Did lots of stretching and quad strengthening. Now doing dry needling in the quad area and top of the knee area. The quad area dry needling is to make it loose muscles.
I don't know if it's a easy fix or not. I am dealing with this for a long time. PT says it will a long time and only home exercises with stretching and strengthening will help. They also told me to do foam rolling the quad area now to work on those muscles. Quad and also the right side of the tight. The lateral side.
I don't know if this is not PFPS. Doctor told me it's PFPS. I also have a small swelling at the same place. On top of the knee and the top right side..it's still the same swelling for past 4 months. I so ice everyday and it didn't reduce. I really want to find some solution for this burning pain.

[kawi_girl]

SuspectDevice:
Congrats on the 2nd place finish! A win if you ask me. You have fought back hard, I’ve been reading your story. Oh how I long for a good cardio session :'(

Userhere123:
Ah, pain. Mine is crazy. The most consistent is a burning or ‘inflamed’ feeling on the medial side of my right knee. My left knee is also involved yet not as bad. I fluctuate from feeling ok with just an awareness that things aren’t all well, to a deep ache in my knee (s), almost like it’s deep in the bone. Sometimes walking quickly helps, sometimes not. Hurts more to completely straighten, yet surprisingly flexed not as much. Although that, too, can vary.
Dry needling. Be careful, many studies do not support that it helps. I’ve had a bit done on my IT band as well as foam rolling. You get to a point that you try many different modalities in hopes that something will work though, I get that! Here’s some reading that you should have a look at: www.jospt.org. Look for volume 49, September 2019. Lots about the latest research on PFP. (That’s through the Journal of Orthopaedic
And Sports Physical Therapy) Also have a look at globalsportmatters.com
Some interesting info on how to treat this problem. I don’t know if it’s all correct yet there are a few different approaches out there, just look for the common thread. And I do support ‘active rest’ as well. Enough initially to calm things down, yet not too much that your joints get no action. I am actually about to take some time off work to give the resting part a good, honest try. It’s a fine line. Inform yourself as much as you can, don’t just trust your PT completely.
Good luck!
Holy cow, forgive me I did not see that last post of yours until after I posted this. I agree with SuspectDevice in that your problem does not seem to fit PFPS. One never knows as we all present a bit differently, plus I’m learning that PFP is more a blanket term for anterior knee pain that doesn’t fit into another category...yet perhaps you need a second or third opinion. I still stand by the ‘arm yourself with knowledge’ idea.

[Userhere123]

SuspectDevice:
Congrats on the 2nd place finish! A win if you ask me. You have fought back hard, I’ve been reading your story. Oh how I long for a good cardio session :'(

Userhere123:
Ah, pain. Mine is crazy. The most consistent is a burning or ‘inflamed’ feeling on the medial side of my right knee. My left knee is also involved yet not as bad. I fluctuate from feeling ok with just an awareness that things aren’t all well, to a deep ache in my knee (s), almost like it’s deep in the bone. Sometimes walking quickly helps, sometimes not. Hurts more to completely straighten, yet surprisingly flexed not as much. Although that, too, can vary.
Dry needling. Be careful, many studies do not support that it helps. I’ve had a bit done on my IT band as well as foam rolling. You get to a point that you try many different modalities in hopes that something will work though, I get that! Here’s some reading that you should have a look at: www.jospt.org. Look for volume 49, September 2019. Lots about the latest research on PFP. (That’s through the Journal of Orthopaedic
And Sports Physical Therapy) Also have a look at globalsportmatters.com
Some interesting info on how to treat this problem. I don’t know if it’s all correct yet there are a few different approaches out there, just look for the common thread. And I do support ‘active rest’ as well. Enough initially to calm things down, yet not too much that your joints get no action. I am actually about to take some time off work to give the resting part a good, honest try. It’s a fine line. Inform yourself as much as you can, don’t just trust your PT completely.
Good luck!
Holy cow, forgive me I did not see that last post of yours until after I posted this. I agree with SuspectDevice in that your problem does not seem to fit PFPS. One never knows as we all present a bit differently, plus I’m learning that PFP is more a blanket term for anterior knee pain that doesn’t fit into another category...yet perhaps you need a second or third opinion. I still stand by the ‘arm yourself with knowledge’ idea.

Thank you!!!
I really don't know what's the problem is. I went for a second opinion too. They said i need PT. Nothing more from them. The worst thing is, I didn't injure anywhere and the knee pain started as such and been going for so long. I just did some hilly roads walk with a wrong shoe. That might be a reason. But nothing helps to get better. I am educating myself in all aspects about this. Even changed to a new PT now. New PT tried 3 sessions of aggressive dry needling. But still the same level of pain. He said I might need one or two more dry needling sessions. I really don't know if i should do more or not. It really hurts and very sore afterwards. I couldn't handle it. But I am in the mindset where I can try anything to be pain free. This burning pain is ruining me everyday. Sorry for long post. Just venting. I will educate myself more and try to get a solution. Meanwhile, hoping to get some information from this valuable forum. I hope someone can help me.

[SuspectDevice]

PFPS is anterior (i.e. right in the front-middle of the knee, under the kneecap).  What you have is more lateral and sounds to me like something else.  I'd be saying either tight ITB (which your PTs are trying to solve through foam rolling, stretching & needling, which is good, but the strengthening might be too much at this stage). Or it could be a torn lateral meniscus - though that should be seen on an MRI.

The main thing I've learned about knee pain is that it can be very hard to diagnose the exact problem if the MRI shows nothing obvious, and it can take a very long time to work out the solution.  Lots of trial & error, but don't give up.  I've had major improvements over 7 yrs.

6 months in the scheme of things is not a long time!

I agree with Kawi-girl that active rest is a good option.  If you are an obsessed exerciser like me, it is very hard to do, but it really is the best way to go.  And for me, 6 months on Celebrex was a God-send for knocking out the chronic inflammation.  A lot of people can't handle anti-inflammatories (causes gut problems), but I had no dramas with it.

But if your problem is a tight ITB rubbing on the outside of the knee, or a lateral meniscus tear then anti-inflammatories are not the long-term solution.  Rest and gentle rehab is the way to go.  Surgery should only be a last resort.  Knee surgery is an absolute lottery IMO.

[kawi_girl]

SuspectDevice, thanks for chiming in on my thread, you seem to have learned a lot about PFPS through your long journey to heal and I appreciate your comments. In your own threads, you mention sitting and dangling your legs. What does that help,with, and how?

Today I officially begin my attempt at active rest. I have taken a leave of absence from work for 2 months.

Don’t know if my previous level of activity is in my future yet I have to try this.

[SuspectDevice]

SuspectDevice, thanks for chiming in on my thread, you seem to have learned a lot about PFPS through your long journey to heal and I appreciate your comments. In your own threads, you mention sitting and dangling your legs. What does that help,with, and how?

Today I officially begin my attempt at active rest. I have taken a leave of absence from work for 2 months.

Don’t know if my previous level of activity is in my future yet I have to try this.

It's just a gentle way of moving the knees without over-taxing them - it's not just dangling them, but also very gently swinging the lower legs back and forth, thus working the knees.  Richard Bedard also talks about how knee movement improves the quality of the synovial fluid in the joint, which helps lubricate the joint and reduce pain.  I still find my knees get stiff and a little bit sore/tingly, and doing these 'knee swingers' helps loosen things up.

[kawi_girl]

SuspectDevice, thanks for chiming in on my thread, you seem to have learned a lot about PFPS through your long journey to heal and I appreciate your comments. In your own threads, you mention sitting and dangling your legs. What does that help,with, and how?

Today I officially begin my attempt at active rest. I have taken a leave of absence from work for 2 months.

Don’t know if my previous level of activity is in my future yet I have to try this.

It's just a gentle way of moving the knees without over-taxing them - it's not just dangling them, but also very gently swinging the lower legs back and forth, thus working the knees.  Richard Bedard also talks about how knee movement improves the quality of the synovial fluid in the joint, which helps lubricate the joint and reduce pain.  I still find my knees get stiff and a little bit sore/tingly, and doing these 'knee swingers' helps loosen things up.

Thank you! That makes sense to me and I will try this. How many times a day would you do this, and for how long each time? I imagine that the answer depends on the person, I was just wondering about a general starting point.

[SuspectDevice]

SuspectDevice, thanks for chiming in on my thread, you seem to have learned a lot about PFPS through your long journey to heal and I appreciate your comments. In your own threads, you mention sitting and dangling your legs. What does that help,with, and how?

Today I officially begin my attempt at active rest. I have taken a leave of absence from work for 2 months.

Don’t know if my previous level of activity is in my future yet I have to try this.

It's just a gentle way of moving the knees without over-taxing them - it's not just dangling them, but also very gently swinging the lower legs back and forth, thus working the knees.  Richard Bedard also talks about how knee movement improves the quality of the synovial fluid in the joint, which helps lubricate the joint and reduce pain.  I still find my knees get stiff and a little bit sore/tingly, and doing these 'knee swingers' helps loosen things up.

Thank you! That makes sense to me and I will try this. How many times a day would you do this, and for how long each time? I imagine that the answer depends on the person, I was just wondering about a general starting point.

I'd do 5mins before exercise and 5 mins after.  Only do this once per day max.

[kawi_girl]

So, to continue on my journey I have purchased ‘Saving My Knees,’ I have already read the Painscience one about PFPS. This is to add to many of the most recent scientific studies I have read, as well as watching the lectures by Dr. Scott Dye.

I appreciated the advice the SuspectDevice shared from this book and felt that I should purchase it myself. So far I’m really enjoying it and am finding a lot of things in common with the author, mainly the growing lack of faith in doctors and PTs. I don’t think that my pain levels are quite as bad, yet the fact that they are persistent and holding me back from my desired level of fitness is something I relate to. Constant pain at any level gets hard to live with.

I am even questioning my current routine of rest and the few exercises that I do, so maybe I will get some ideas as to how to proceed after finishing the book. Of course I know that the answer on what to do for me will not be revealed, just hoping for help in finding the right path.

More later...

[kawi_girl]

Read the book in one sitting (well, I did get up and walk around every so often...part of my plan)

So, the skeptic in me is asking, if this is really the way to heal (lots of time, patience, gentle movement over exercises that support knee and hip muscles) why haven’t more PT’s got on this bandwagon? Now, the book did make sense to me and I agree with a lot of it.

It’s just that if the evidence points that the “traditional “ way of treating PFP is not working well, wouldn’t you, as a PT, keep looking for the answer, in the same way that medicine has developed over time?

I am doing some prescribed stretches and strengthening movements, yet no aggressive quad strengthening, it’s more for glute and hip right now. Some quad setting and some patella mobilizations. Lying down with my knees up is still more comfortable, yet I’m afraid I’m doing too much of that now, and should be walking more.

Any one experiencing their own doubts regarding what they are trying?

[SuspectDevice]

Read the book in one sitting (well, I did get up and walk around every so often...part of my plan)

So, the skeptic in me is asking, if this is really the way to heal (lots of time, patience, gentle movement over exercises that support knee and hip muscles) why haven’t more PT’s got on this bandwagon? Now, the book did make sense to me and I agree with a lot of it.

It’s just that if the evidence points that the “traditional “ way of treating PFP is not working well, wouldn’t you, as a PT, keep looking for the answer, in the same way that medicine has developed over time?

I am doing some prescribed stretches and strengthening movements, yet no aggressive quad strengthening, it’s more for glute and hip right now. Some quad setting and some patella mobilizations. Lying down with my knees up is still more comfortable, yet I’m afraid I’m doing too much of that now, and should be walking more.

Any one experiencing their own doubts regarding what they are trying?

After I figured out the path forward through my own research & emailing with others who had the same problem, I emailed the numerous 'experts' (Sports Drs, Physiotherapists, Orthopedic surgeons, a pain specialist) whom I'd visited to tell them what I'd discovered, and suggest that their focus on quad strengthening was wrong, and they look at Dr Dyes research.

What did I hear back?.....the chirp, chirp, chirp of crickets - nothing.  I later visited my local physio for a back problem (which she is very good at assisting with) and mentioned my email about PFPS, even suggested we should have a coffee one day & discuss it in more detail.  She seemed to begrudgingly agree with the PFPS/loss of tissue homeostasis theory (though was more inclined to take the pain specialists CRPS line - which I'm now sure was wrong), but did not seem too interested in learning more.  Ditto for another physio on a chat forum - said he'd learned about the Dr Dye theory decades ago, but it did not seem to feature in his professions treatment plans.

I even emailed the Australian Assoc. of Orthopedic Surgeons & offered to speak at their conference about my experience!......but again - chirp, chirp.....

My local orthopedic surgeon was the most honest - he said their profession did not really understand PFPS, but he advised that surgical intervention was not the way I should go.

One local GP who was a runner and also had PFPS was also very useful.  He described recovery as  'climbing a slightly upward tilted sawblade' - lots of setbacks, but heading in the right direction slowly.

The reason they don't pursue it is probably because it does not lead to the quick silver bullet solution patients are looking for.  It is a long process of trial and error, with many setbacks.  They are under pressure to offer instantaneous relief, but that is simply not possible with this condition IMO.

And you will have many many doubts about your plan(s), but keep the faith and keep experimenting.  It may take years, but it is possible.

Also, have a look at the posts by Terry42 on this forum.  His story kept me going through the worst days.

[kawi_girl]

Yes, I have the same experience. All the health care professionals I’ve asked so far about Dr. Dye’s theory have not even heard of him! I’ve even read the latest research on PFPS from a medical journal (2019) and while it is at least acknowledged that for exercises to focus on hip and knee strengthening (not the old quad strengthening babble)is the ‘best’ approach, nothing is mentioned about rest for the return to homeostasis.
It makes me wonder why I’m even going to physio...yet I do have a good rapport with her and can at least get input from someone who is interested in my recovery. Guaranteed I’ll still be in recovery long after I’m done seeing her though! The second PT I saw did also acknowledge that PFP can be a very tricky problem. (I’m on my third and possibly last PT)
So, when the studies say that certain exercises have helped, I don’t believe they ever mean cured. Just a reduction of pain.
Makes me wonder if the body would just eventually heal on its on with no intervention other than scaling back activities.
I’m the type of person that wants to feel as though I’m working towards something though, so that approach would not fit well with my personality.
Have you also read anything by Doug Kelsey? Wonder if there are any helpful things in there.

[SuspectDevice]

Yes, I have the same experience. All the health care professionals I’ve asked so far about Dr. Dye’s theory have not even heard of him! I’ve even read the latest research on PFPS from a medical journal (2019) and while it is at least acknowledged that for exercises to focus on hip and knee strengthening (not the old quad strengthening babble)is the ‘best’ approach, nothing is mentioned about rest for the return to homeostasis.
It makes me wonder why I’m even going to physio...yet I do have a good rapport with her and can at least get input from someone who is interested in my recovery. Guaranteed I’ll still be in recovery long after I’m done seeing her though! The second PT I saw did also acknowledge that PFP can be a very tricky problem. (I’m on my third and possibly last PT)
So, when the studies say that certain exercises have helped, I don’t believe they ever mean cured. Just a reduction of pain.
Makes me wonder if the body would just eventually heal on its on with no intervention other than scaling back activities.
I’m the type of person that wants to feel as though I’m working towards something though, so that approach would not fit well with my personality.
Have you also read anything by Doug Kelsey? Wonder if there are any helpful things in there.

I've read a fair bit from Doug Kelsey.  His main approach is about envelope of function like Dr Dye, and a series of exercises to rebuild leg/hip etc strength, but without over-doing it.  He recommended the Total Gym machine, where you can do body-weight exercises, but can change the level of difficulty by changing the level of incline on the machine.

He talks about how to find a level within your envelope of function, and then how to gradually 'edge' that harder as you get better.

I did find some of his exercises too much though when my knees were really bad (e.g. sliders).

Would the knees eventually heal without intervention?  Yes IMO, but you have to find the 'sweet spot' of knee movement which helps them get better without overdoing it.  Starting with just gentle 20 mins walking (no strengthening whatsoever) would be my guess at the best way to start.  Also some gentle leg swingers each day.  And perhaps icing, pro-biotics, avoiding anti-inflammatory foods (though I'm a massive fail on this one - beer is too nice!), stretching and - if like me you can't stand to entirely lose your fitness - freestyle swimming a 2-3 times/week but with NO kicking (i.e. use a pool buoy and ankle band, so it is only your upper body doing the work).

Kawi-girl, I've just re-read your original post & am wondering if PFPS is your problem?  In PFPS, the pain is anterior mostly (front of knee, under kneecap) and brought on by over-use, though it does come on quite suddenly.  But your pain is more medial and was brought on by a sudden impact which makes me wonder?