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Offline kawi_girl

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Re: Over a year and frustrated
« Reply #30 on: March 03, 2020, 04:29:38 PM »
Yes, I see why you suspect it could be something other than PFPS. So a bit more history to clarify. As a result of the impact, my iliac wing of the left side fractured in 4 places. It was considered a stable fracture however and the decision was made not to operate and pin it, just to let it heal. As a result my left side is lower now. The thought is that it altered my gait pattern. I had bruising under my left knee, lateral side, and under the right knee, medial side. No one can explain why. A full CT scan upon admission didnít reveal anything, although I did complain about some right knee pain at the time. Then I had 3 months of inactivity and was using a walker, with most or all of my weight on my right leg. After started to walk unassisted and at a quicker pace is when I started getting some knee pain in the right. Minimal at first then increasing. That was fall of 2018. December of 2019 the left knee joined the party. I have had standing xrays and an MRI. the only thing the MRI revealed was some mal tracking and suspected fat pad impingement in the right. So according to my care team, the PFPS diagnosis  still stands. The right knee MRI showed some cartilage wear yet Iím also 49 so that might be normal. Iíve always had good mobility though, and no feeling that my knees would Ďgive out.í
Frustrating to say the least.

Offline SuspectDevice

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Re: Over a year and frustrated
« Reply #31 on: March 03, 2020, 09:11:31 PM »
Yes, I see why you suspect it could be something other than PFPS. So a bit more history to clarify. As a result of the impact, my iliac wing of the left side fractured in 4 places. It was considered a stable fracture however and the decision was made not to operate and pin it, just to let it heal. As a result my left side is lower now. The thought is that it altered my gait pattern. I had bruising under my left knee, lateral side, and under the right knee, medial side. No one can explain why. A full CT scan upon admission didnít reveal anything, although I did complain about some right knee pain at the time. Then I had 3 months of inactivity and was using a walker, with most or all of my weight on my right leg. After started to walk unassisted and at a quicker pace is when I started getting some knee pain in the right. Minimal at first then increasing. That was fall of 2018. December of 2019 the left knee joined the party. I have had standing xrays and an MRI. the only thing the MRI revealed was some mal tracking and suspected fat pad impingement in the right. So according to my care team, the PFPS diagnosis  still stands. The right knee MRI showed some cartilage wear yet Iím also 49 so that might be normal. Iíve always had good mobility though, and no feeling that my knees would Ďgive out.í
Frustrating to say the least.

OK so you have PFPS in BOTH knees yes?

That story does sound more like PFPS, and a bit like me.  Mine all started with a sudden tear in my left medial meniscus while running, surgery to remove the torn piece a month or so later, then the PFPS symptoms started in BOTH knees within a few weeks of surgery.  I do think I may have had the PFPS coming on very mildly before the meniscus tear due to over-use (running, cycling lots & too hard), but the surgery ramped things up to an extreme level.

I also have cartilage wear, mostly on the back of the kneecaps (i.e. patella chondromalacia) but have lived with that for decades and could always manage it.  The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline kawi_girl

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Re: Over a year and frustrated
« Reply #32 on: March 03, 2020, 11:54:11 PM »
Yes, I have PFP in both knees, although for the longest time it was the right that was the problem. Looking back at my knee entries (like many of us Iíve been keeping track of the pain and ups and downs) I notice that I would get some occasional chirp from the left knee, yet it didnít fully join in until this past December (2019).

Wow, your last statement sounds JUST like what I try to explain to my health providers. That even on Ďgoodí days, I constantly feel that something is not right, that it does not feel normal. (At this point, my left still does get some normal feeling days, yet the right one ALWAYS feels Ďsickí even on low pain days)

If anything, itís nice to hear from someone who gets it.

Also, I haves dreams about standing up on the pedals of my bike and just going for it! Enjoying the speed and that great after exercise burn in my legs. I hate to think that Iíll never be able to feel that again :'(

Offline Userhere123

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Re: Over a year and frustrated
« Reply #33 on: March 04, 2020, 02:00:34 AM »
Yes, I have the same experience. All the health care professionals Iíve asked so far about Dr. Dyeís theory have not even heard of him! Iíve 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 Ďbestí approach, nothing is mentioned about rest for the return to homeostasis.
It makes me wonder why Iím 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 Iíll still be in recovery long after Iím done seeing her though! The second PT I saw did also acknowledge that PFP can be a very tricky problem. (Iím on my third and possibly last PT)
So, when the studies say that certain exercises have helped, I donít 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.
Iím the type of person that wants to feel as though Iím 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?

Even I have pain in the top of the knee and right side. I have been told it's PFPS. It's really confusing.
I am just trying with PT and dry needling. I also have a scar tissue on that knee which I have got from my childhood. PT says that tissue is tight and pulling up..so he did dry needling for that scar tissue also. It's very sore and painful afterwards. It's been 10 days after the scar tissue dry needling. I still feel the pain and discomfort in the knee. And also I am feeling very instable and imbalanced in the knee. I am limping around. I have never felt instable like this in the past 6 months. I don't know if it's getting better or worse. I had 2 session of  aggressive dry needling for thigh and one dry needling for the knee scar tissue. I don't know if that's the reason for this instability. I have this instable and imbalanced feeling along with my burning pain.
I told my PT that it's very imbalanced and feel so weak in the knee. PT said that could because of my Patella position and not because of the dry needling or the scar tissue process.
I don't know if I can blindly believe my pt. It's a new PT. I have changed pt recently.
And that leg swinging thing.  I also try to do that in a sitting position. I swing my leg front and back while sitting in a chair. I literally feels my knee crunching and cracking inside. I can feel that on top of the knee. It gives a very much discomfort and pain while bending my knee up and down. What's the reason for that? Is that normal? I feel the crunchiness inside.
Also, I would like to know what Dr.Dye theory you are talking about? I would like to read about it. Do you have any link? I havent read anything which he wrote.
I got to know about Dr.Dye from Vicster in my other thread. I am in the US, but not California. I tried to contact his office about online opinion appointment. I thought of getting an opinion from him for my issue. They said he went on semi retirement this year. And he see patients only once or twice a month. Also not accepting insurance. So it's difficult for me..so I just left it with no options.
I would like to know where I can find about his or others theory or anything related to pfps. Really appreciate your inputs. I am trying so hard to educate myself to know better about my issue. I am contacting more doctors online too. But couldn't get a proper response. It's very confusing for me how to proceed further. I am not looking for magic bullet solution. But would like to know what's actually happening.. 

Offline Userhere123

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Re: Over a year and frustrated
« Reply #34 on: March 04, 2020, 02:16:53 AM »
Yes, I see why you suspect it could be something other than PFPS. So a bit more history to clarify. As a result of the impact, my iliac wing of the left side fractured in 4 places. It was considered a stable fracture however and the decision was made not to operate and pin it, just to let it heal. As a result my left side is lower now. The thought is that it altered my gait pattern. I had bruising under my left knee, lateral side, and under the right knee, medial side. No one can explain why. A full CT scan upon admission didnít reveal anything, although I did complain about some right knee pain at the time. Then I had 3 months of inactivity and was using a walker, with most or all of my weight on my right leg. After started to walk unassisted and at a quicker pace is when I started getting some knee pain in the right. Minimal at first then increasing. That was fall of 2018. December of 2019 the left knee joined the party. I have had standing xrays and an MRI. the only thing the MRI revealed was some mal tracking and suspected fat pad impingement in the right. So according to my care team, the PFPS diagnosis  still stands. The right knee MRI showed some cartilage wear yet Iím also 49 so that might be normal. Iíve always had good mobility though, and no feeling that my knees would Ďgive out.í
Frustrating to say the least.

OK so you have PFPS in BOTH knees yes?

That story does sound more like PFPS, and a bit like me.  Mine all started with a sudden tear in my left medial meniscus while running, surgery to remove the torn piece a month or so later, then the PFPS symptoms started in BOTH knees within a few weeks of surgery.  I do think I may have had the PFPS coming on very mildly before the meniscus tear due to over-use (running, cycling lots & too hard), but the surgery ramped things up to an extreme level.

I also have cartilage wear, mostly on the back of the kneecaps (i.e. patella chondromalacia) but have lived with that for decades and could always manage it.  The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal.
The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal."""
I am exactly having the same thing. Constant burning pain on top of the knee and right side. It gives burning pain whenever I bend my knees and stretch straight while lying down. Also while standing. Recently, the instable and imbalanced feel is happening inside the knee. Sometimes I feel like limping. I am 34yrs old and never had any knee issues before. This happened out of the blue and it's been there for 6 months. Same level of burning pain and little swelling.
So, as you said the burning pain means the PFPS??
"

Offline kawi_girl

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Re: Over a year and frustrated
« Reply #35 on: March 04, 2020, 02:52:51 PM »
Yes, it does seem that the common thread with PFPS is that burning sensation (some may describe as a feeling of inflammation). The problem I think is that it can present itself somewhat differently between individuals, and also how bad of a case you may have. It is definitely anterior knee pain, often under the kneecap or around. Donít forget pain can be weird, and you can have referred pain as well, just to confuse to issue. What I mean by that is, is that maybe all the pain is under the kneecap yet you may feel it to one side or the other. Mind you, with that I am just speculating. What does seem to be a fact is PFPS diagnosis is made by ruling other things out. Also that there are a few agreed upon treatments yet because no one seems to be able to say with certainty how to fix it or exactly what is going on in your knee...it can be a LOT of trial and error. That is very hard when you are also trying to work and live your life. One thing though, is that I donít have any swelling.

Currently Iím struggling with trying to figure out the balance between rest and movement to heal. I feel that too much rest isnít good for my knees yet I donít want to overdo the movement part either. I was fortunate to be able to take 2 months off work yet I feel frantic already as the time to heal sounds like itís way longer than that.

The best way to learn Dr. Dyeís theory is on YouTube, he has a lecture on there. It is long yet worth it I think as it just gives you more information as to what could be going on. I donít know the link yet if you type in his name Iím sure it should come up.

Offline SuspectDevice

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Re: Over a year and frustrated
« Reply #36 on: March 04, 2020, 11:17:00 PM »
Yes, I have the same experience. All the health care professionals Iíve asked so far about Dr. Dyeís theory have not even heard of him! Iíve 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 Ďbestí approach, nothing is mentioned about rest for the return to homeostasis.
It makes me wonder why Iím 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 Iíll still be in recovery long after Iím done seeing her though! The second PT I saw did also acknowledge that PFP can be a very tricky problem. (Iím on my third and possibly last PT)
So, when the studies say that certain exercises have helped, I donít 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.
Iím the type of person that wants to feel as though Iím 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?

Even I have pain in the top of the knee and right side. I have been told it's PFPS. It's really confusing.
I am just trying with PT and dry needling. I also have a scar tissue on that knee which I have got from my childhood. PT says that tissue is tight and pulling up..so he did dry needling for that scar tissue also. It's very sore and painful afterwards. It's been 10 days after the scar tissue dry needling. I still feel the pain and discomfort in the knee. And also I am feeling very instable and imbalanced in the knee. I am limping around. I have never felt instable like this in the past 6 months. I don't know if it's getting better or worse. I had 2 session of  aggressive dry needling for thigh and one dry needling for the knee scar tissue. I don't know if that's the reason for this instability. I have this instable and imbalanced feeling along with my burning pain.
I told my PT that it's very imbalanced and feel so weak in the knee. PT said that could because of my Patella position and not because of the dry needling or the scar tissue process.
I don't know if I can blindly believe my pt. It's a new PT. I have changed pt recently.
And that leg swinging thing.  I also try to do that in a sitting position. I swing my leg front and back while sitting in a chair. I literally feels my knee crunching and cracking inside. I can feel that on top of the knee. It gives a very much discomfort and pain while bending my knee up and down. What's the reason for that? Is that normal? I feel the crunchiness inside.
Also, I would like to know what Dr.Dye theory you are talking about? I would like to read about it. Do you have any link? I havent read anything which he wrote.
I got to know about Dr.Dye from Vicster in my other thread. I am in the US, but not California. I tried to contact his office about online opinion appointment. I thought of getting an opinion from him for my issue. They said he went on semi retirement this year. And he see patients only once or twice a month. Also not accepting insurance. So it's difficult for me..so I just left it with no options.
I would like to know where I can find about his or others theory or anything related to pfps. Really appreciate your inputs. I am trying so hard to educate myself to know better about my issue. I am contacting more doctors online too. But couldn't get a proper response. It's very confusing for me how to proceed further. I am not looking for magic bullet solution. But would like to know what's actually happening..

I had a lot of knee crunching, even before my PFPS started.  It got worse after it started.  It seems much better know, but I still rarely crouch or squat, so maybe that is why I don't hear it.  From my reading, the crunching noise is not a major issue, even people with good knees have it.  Anterior pain, stiffness & burning are the key indicators.

My knees also felt very unstable, but I think that was due to the constant pain & was in part psychological.  Once I was able to do some leg/hip/glute/core strengthening, my brain learned that my knees actually were not about to collapse, and that problem improved a lot.  However, I'm still not as 'carefree' and stable on my knees as I used to be.

Links to Dr Dyes info:

http://aoj.amegroups.com/article/view/4438/5056

https://www.youtube.com/watch?v=jGLisqHx8sM

https://www.youtube.com/watch?v=fybd4MZe3jk

Yes, I see why you suspect it could be something other than PFPS. So a bit more history to clarify. As a result of the impact, my iliac wing of the left side fractured in 4 places. It was considered a stable fracture however and the decision was made not to operate and pin it, just to let it heal. As a result my left side is lower now. The thought is that it altered my gait pattern. I had bruising under my left knee, lateral side, and under the right knee, medial side. No one can explain why. A full CT scan upon admission didnít reveal anything, although I did complain about some right knee pain at the time. Then I had 3 months of inactivity and was using a walker, with most or all of my weight on my right leg. After started to walk unassisted and at a quicker pace is when I started getting some knee pain in the right. Minimal at first then increasing. That was fall of 2018. December of 2019 the left knee joined the party. I have had standing xrays and an MRI. the only thing the MRI revealed was some mal tracking and suspected fat pad impingement in the right. So according to my care team, the PFPS diagnosis  still stands. The right knee MRI showed some cartilage wear yet Iím also 49 so that might be normal. Iíve always had good mobility though, and no feeling that my knees would Ďgive out.í
Frustrating to say the least.

OK so you have PFPS in BOTH knees yes?

That story does sound more like PFPS, and a bit like me.  Mine all started with a sudden tear in my left medial meniscus while running, surgery to remove the torn piece a month or so later, then the PFPS symptoms started in BOTH knees within a few weeks of surgery.  I do think I may have had the PFPS coming on very mildly before the meniscus tear due to over-use (running, cycling lots & too hard), but the surgery ramped things up to an extreme level.

I also have cartilage wear, mostly on the back of the kneecaps (i.e. patella chondromalacia) but have lived with that for decades and could always manage it.  The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal.
The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal."""
I am exactly having the same thing. Constant burning pain on top of the knee and right side. It gives burning pain whenever I bend my knees and stretch straight while lying down. Also while standing. Recently, the instable and imbalanced feel is happening inside the knee. Sometimes I feel like limping. I am 34yrs old and never had any knee issues before. This happened out of the blue and it's been there for 6 months. Same level of burning pain and little swelling.
So, as you said the burning pain means the PFPS??
"


I can't say that burning = PFPS 100%, but I think a more widespread anterior burning is a strong indicator.  BTW my knees never swelled at all.  But they did get hot and discoloured (mostly red, sometimes a bit purple).  I think all that indicates chronic inflammation of the synovial lining.

Yes, it does seem that the common thread with PFPS is that burning sensation (some may describe as a feeling of inflammation). The problem I think is that it can present itself somewhat differently between individuals, and also how bad of a case you may have. It is definitely anterior knee pain, often under the kneecap or around. Donít forget pain can be weird, and you can have referred pain as well, just to confuse to issue. What I mean by that is, is that maybe all the pain is under the kneecap yet you may feel it to one side or the other. Mind you, with that I am just speculating. What does seem to be a fact is PFPS diagnosis is made by ruling other things out. Also that there are a few agreed upon treatments yet because no one seems to be able to say with certainty how to fix it or exactly what is going on in your knee...it can be a LOT of trial and error. That is very hard when you are also trying to work and live your life. One thing though, is that I donít have any swelling.

Currently Iím struggling with trying to figure out the balance between rest and movement to heal. I feel that too much rest isnít good for my knees yet I donít want to overdo the movement part either. I was fortunate to be able to take 2 months off work yet I feel frantic already as the time to heal sounds like itís way longer than that.

The best way to learn Dr. Dyeís theory is on YouTube, he has a lecture on there. It is long yet worth it I think as it just gives you more information as to what could be going on. I donít know the link yet if you type in his name Iím sure it should come up.

I agree, symptoms can vary between people a lot.  But I think the unfocused generalised anterior burning is a key pointer.
Note that when I had ITB problems, I also got a burn, but it was very focused in a small spot on the outside of the knee and would go away after not running for a bit.  PFPS burning is much more persistent, and can be flared up by the most innocuous little things that before you would not even have noticed.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline kawi_girl

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Re: Over a year and frustrated
« Reply #37 on: March 07, 2020, 02:58:05 PM »
And the battle continues...
Very frustrated today. I may have overdid it yesterday (which is pathetic as the Ďextraí activity was shopping at one store only-I needed food-sweeping the garage floor and a walk to the mailbox which is about 400 steps) one problem I am finding is that too much inactivity causes soreness, and too much causes a flare up. Yet Iím worried if I rest too much my envelope of function will shrink to nothing.
Can I still recover while activity causes some discomfort?
I bought myself a pedometer to record step amounts each day, and put some shock absorbing insoles in my runners (I have a pair I wear only inside)
Thinking about custom orthotics, as they have helped some people who have combined their use with a strengthening program (I am working on one as well). Anyone else have luck with orthotics?

Offline Userhere123

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Re: Over a year and frustrated
« Reply #38 on: March 09, 2020, 02:50:41 AM »
Yes, I have the same experience. All the health care professionals Iíve asked so far about Dr. Dyeís theory have not even heard of him! Iíve 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 Ďbestí approach, nothing is mentioned about rest for the return to homeostasis.
It makes me wonder why Iím 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 Iíll still be in recovery long after Iím done seeing her though! The second PT I saw did also acknowledge that PFP can be a very tricky problem. (Iím on my third and possibly last PT)
So, when the studies say that certain exercises have helped, I donít 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.
Iím the type of person that wants to feel as though Iím 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?

Even I have pain in the top of the knee and right side. I have been told it's PFPS. It's really confusing.
I am just trying with PT and dry needling. I also have a scar tissue on that knee which I have got from my childhood. PT says that tissue is tight and pulling up..so he did dry needling for that scar tissue also. It's very sore and painful afterwards. It's been 10 days after the scar tissue dry needling. I still feel the pain and discomfort in the knee. And also I am feeling very instable and imbalanced in the knee. I am limping around. I have never felt instable like this in the past 6 months. I don't know if it's getting better or worse. I had 2 session of  aggressive dry needling for thigh and one dry needling for the knee scar tissue. I don't know if that's the reason for this instability. I have this instable and imbalanced feeling along with my burning pain.
I told my PT that it's very imbalanced and feel so weak in the knee. PT said that could because of my Patella position and not because of the dry needling or the scar tissue process.
I don't know if I can blindly believe my pt. It's a new PT. I have changed pt recently.
And that leg swinging thing.  I also try to do that in a sitting position. I swing my leg front and back while sitting in a chair. I literally feels my knee crunching and cracking inside. I can feel that on top of the knee. It gives a very much discomfort and pain while bending my knee up and down. What's the reason for that? Is that normal? I feel the crunchiness inside.
Also, I would like to know what Dr.Dye theory you are talking about? I would like to read about it. Do you have any link? I havent read anything which he wrote.
I got to know about Dr.Dye from Vicster in my other thread. I am in the US, but not California. I tried to contact his office about online opinion appointment. I thought of getting an opinion from him for my issue. They said he went on semi retirement this year. And he see patients only once or twice a month. Also not accepting insurance. So it's difficult for me..so I just left it with no options.
I would like to know where I can find about his or others theory or anything related to pfps. Really appreciate your inputs. I am trying so hard to educate myself to know better about my issue. I am contacting more doctors online too. But couldn't get a proper response. It's very confusing for me how to proceed further. I am not looking for magic bullet solution. But would like to know what's actually happening..

I had a lot of knee crunching, even before my PFPS started.  It got worse after it started.  It seems much better know, but I still rarely crouch or squat, so maybe that is why I don't hear it.  From my reading, the crunching noise is not a major issue, even people with good knees have it.  Anterior pain, stiffness & burning are the key indicators.

My knees also felt very unstable, but I think that was due to the constant pain & was in part psychological.  Once I was able to do some leg/hip/glute/core strengthening, my brain learned that my knees actually were not about to collapse, and that problem improved a lot.  However, I'm still not as 'carefree' and stable on my knees as I used to be.

Links to Dr Dyes info:

http://aoj.amegroups.com/article/view/4438/5056

https://www.youtube.com/watch?v=jGLisqHx8sM

https://www.youtube.com/watch?v=fybd4MZe3jk

Yes, I see why you suspect it could be something other than PFPS. So a bit more history to clarify. As a result of the impact, my iliac wing of the left side fractured in 4 places. It was considered a stable fracture however and the decision was made not to operate and pin it, just to let it heal. As a result my left side is lower now. The thought is that it altered my gait pattern. I had bruising under my left knee, lateral side, and under the right knee, medial side. No one can explain why. A full CT scan upon admission didnít reveal anything, although I did complain about some right knee pain at the time. Then I had 3 months of inactivity and was using a walker, with most or all of my weight on my right leg. After started to walk unassisted and at a quicker pace is when I started getting some knee pain in the right. Minimal at first then increasing. That was fall of 2018. December of 2019 the left knee joined the party. I have had standing xrays and an MRI. the only thing the MRI revealed was some mal tracking and suspected fat pad impingement in the right. So according to my care team, the PFPS diagnosis  still stands. The right knee MRI showed some cartilage wear yet Iím also 49 so that might be normal. Iíve always had good mobility though, and no feeling that my knees would Ďgive out.í
Frustrating to say the least.

OK so you have PFPS in BOTH knees yes?

That story does sound more like PFPS, and a bit like me.  Mine all started with a sudden tear in my left medial meniscus while running, surgery to remove the torn piece a month or so later, then the PFPS symptoms started in BOTH knees within a few weeks of surgery.  I do think I may have had the PFPS coming on very mildly before the meniscus tear due to over-use (running, cycling lots & too hard), but the surgery ramped things up to an extreme level.

I also have cartilage wear, mostly on the back of the kneecaps (i.e. patella chondromalacia) but have lived with that for decades and could always manage it.  The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal.
The PFPS symptoms are quite different - the constant burning being the main clue IMO, but also an overall knee stiffness and loss of easy movement, constantly 'feeling' your knees - they do not feel normal."""
I am exactly having the same thing. Constant burning pain on top of the knee and right side. It gives burning pain whenever I bend my knees and stretch straight while lying down. Also while standing. Recently, the instable and imbalanced feel is happening inside the knee. Sometimes I feel like limping. I am 34yrs old and never had any knee issues before. This happened out of the blue and it's been there for 6 months. Same level of burning pain and little swelling.
So, as you said the burning pain means the PFPS??
"


I can't say that burning = PFPS 100%, but I think a more widespread anterior burning is a strong indicator.  BTW my knees never swelled at all.  But they did get hot and discoloured (mostly red, sometimes a bit purple).  I think all that indicates chronic inflammation of the synovial lining.

Yes, it does seem that the common thread with PFPS is that burning sensation (some may describe as a feeling of inflammation). The problem I think is that it can present itself somewhat differently between individuals, and also how bad of a case you may have. It is definitely anterior knee pain, often under the kneecap or around. Donít forget pain can be weird, and you can have referred pain as well, just to confuse to issue. What I mean by that is, is that maybe all the pain is under the kneecap yet you may feel it to one side or the other. Mind you, with that I am just speculating. What does seem to be a fact is PFPS diagnosis is made by ruling other things out. Also that there are a few agreed upon treatments yet because no one seems to be able to say with certainty how to fix it or exactly what is going on in your knee...it can be a LOT of trial and error. That is very hard when you are also trying to work and live your life. One thing though, is that I donít have any swelling.

Currently Iím struggling with trying to figure out the balance between rest and movement to heal. I feel that too much rest isnít good for my knees yet I donít want to overdo the movement part either. I was fortunate to be able to take 2 months off work yet I feel frantic already as the time to heal sounds like itís way longer than that.

The best way to learn Dr. Dyeís theory is on YouTube, he has a lecture on there. It is long yet worth it I think as it just gives you more information as to what could be going on. I donít know the link yet if you type in his name Iím sure it should come up.

I agree, symptoms can vary between people a lot.  But I think the unfocused generalised anterior burning is a key pointer.
Note that when I had ITB problems, I also got a burn, but it was very focused in a small spot on the outside of the knee and would go away after not running for a bit.  PFPS burning is much more persistent, and can be flared up by the most innocuous little things that before you would not even have noticed.
I mostly have pain on the lateral side. And anterior too. My PT also not sure if it's IT band issue it pfps. Is burning more on the lateral side than the top. It burns throughout the day and night whenever I bend or stretch my legs straight.
I don't even know what's the problem is. Just keeping up with exercises and foam rolling. And going to PT for dry needling.

Offline Userhere123

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Re: Over a year and frustrated
« Reply #39 on: March 09, 2020, 02:55:18 AM »
And the battle continues...
Very frustrated today. I may have overdid it yesterday (which is pathetic as the Ďextraí activity was shopping at one store only-I needed food-sweeping the garage floor and a walk to the mailbox which is about 400 steps) one problem I am finding is that too much inactivity causes soreness, and too much causes a flare up. Yet Iím worried if I rest too much my envelope of function will shrink to nothing.
Can I still recover while activity causes some discomfort?
I bought myself a pedometer to record step amounts each day, and put some shock absorbing insoles in my runners (I have a pair I wear only inside)
Thinking about custom orthotics, as they have helped some people who have combined their use with a strengthening program (I am working on one as well). Anyone else have luck with orthotics?

Did you try custom made inserts or over the counter ones?
My PT told me to get an arch support insert. I have never heard of that before. I tried one over the counter and it does help a bit. I have to try that with the new shoe. I got a new shoe for the support. I got one shock absorber and arch support sandals to wear it inside the house. They said it might help. I am getting used to it. Have to see if it really helps. Anyone else have any inputs on the inserts?

Offline SuspectDevice

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Re: Over a year and frustrated
« Reply #40 on: March 09, 2020, 08:21:21 AM »

I mostly have pain on the lateral side. And anterior too. My PT also not sure if it's IT band issue it pfps. Is burning more on the lateral side than the top. It burns throughout the day and night whenever I bend or stretch my legs straight.
I don't even know what's the problem is. Just keeping up with exercises and foam rolling. And going to PT for dry needling.

OK, mine was a constant background burn, whether I moved it or not, and never lateral, always right across the middle area under the kneecap.  In fact, mine often felt better during movement/exercise, but some time later would get much worse while at rest.  If your burn only comes on with movement, I'd be less inclined to think it was PFPS (which I define as chronic synovial inflammation), and more inclined to think it is an ITB issue or something else.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline SuspectDevice

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Re: Over a year and frustrated
« Reply #41 on: March 09, 2020, 08:25:51 AM »
And the battle continues...
Very frustrated today. I may have overdid it yesterday (which is pathetic as the Ďextraí activity was shopping at one store only-I needed food-sweeping the garage floor and a walk to the mailbox which is about 400 steps) one problem I am finding is that too much inactivity causes soreness, and too much causes a flare up. Yet Iím worried if I rest too much my envelope of function will shrink to nothing.
Can I still recover while activity causes some discomfort?
I bought myself a pedometer to record step amounts each day, and put some shock absorbing insoles in my runners (I have a pair I wear only inside)
Thinking about custom orthotics, as they have helped some people who have combined their use with a strengthening program (I am working on one as well). Anyone else have luck with orthotics?

I have hard plastic (off the shelf, not custom) orthotics in my gym & running shoes (not that I do much running anymore).  Initially they were given to me by a physio for a lower back problem (and def helped - though changing my running gait so not over-striding was probably just as important).

But since I had 1/3rd of my medial meniscus removed (the trigger for my PFPS issue), I kept using them as I think they stop my feet rolling inwards = less pressure on the medial meniscus.  I'm just used to using them now.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline Userhere123

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Re: Over a year and frustrated
« Reply #42 on: March 10, 2020, 01:41:05 AM »

I mostly have pain on the lateral side. And anterior too. My PT also not sure if it's IT band issue it pfps. Is burning more on the lateral side than the top. It burns throughout the day and night whenever I bend or stretch my legs straight.
I don't even know what's the problem is. Just keeping up with exercises and foam rolling. And going to PT for dry needling.

OK, mine was a constant background burn, whether I moved it or not, and never lateral, always right across the middle area under the kneecap.  In fact, mine often felt better during movement/exercise, but some time later would get much worse while at rest.  If your burn only comes on with movement, I'd be less inclined to think it was PFPS (which I define as chronic synovial inflammation), and more inclined to think it is an ITB issue or something else.
Thanks again for the reply!!
I don't know what's the issue. I have asked my Pt and ortho. Both said it's not IT band issue. And didn't mention what's the issue. They don't know either. I am just hoping to get some answers soon.

Offline kawi_girl

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Re: Over a year and frustrated
« Reply #43 on: March 10, 2020, 03:38:13 PM »
Userhere123: Boy do I understand your frustration and I hope that you get some answers soon or at least a good routine to try. We all need hope and as long as you can keep learning about your issue and trying things to help you can maintain hope.

Mind you, I sure have my moments of doubt, and confusion as to all the different approaches out there.

I just finished  a book by Doug Kelsey and while I thought it provided some insightful information, it also has confused me a bit. Some say to do your knee strengthening up to 3 times a day, where his approach is different exercises every second day. Working up to mild muscle fatigue. His thoughts actually make more sense to me, isnít one of the keys to strengthening is providing a rest day?
Also, while his program sounds good and he says he doesnít endorse and equipment manufacturers, I feel what he is then lacking are alternative exercises you could do if you donít have the stuff heís using.
I do agree with the use it or lose it idea. Yet he doesnít talk about how much rest, or whether itís ok to have some discomfort while carrying on. I am finding that the rest Iím taking is not making much of a difference, an some days it seems to make thing worse.
SuspectDevice, I am hoping (againj for your thoughts here! :)

Offline Userhere123

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Re: Over a year and frustrated
« Reply #44 on: March 11, 2020, 10:58:20 PM »
Userhere123: Boy do I understand your frustration and I hope that you get some answers soon or at least a good routine to try. We all need hope and as long as you can keep learning about your issue and trying things to help you can maintain hope.

Mind you, I sure have my moments of doubt, and confusion as to all the different approaches out there.

I just finished  a book by Doug Kelsey and while I thought it provided some insightful information, it also has confused me a bit. Some say to do your knee strengthening up to 3 times a day, where his approach is different exercises every second day. Working up to mild muscle fatigue. His thoughts actually make more sense to me, isnít one of the keys to strengthening is providing a rest day?
Also, while his program sounds good and he says he doesnít endorse and equipment manufacturers, I feel what he is then lacking are alternative exercises you could do if you donít have the stuff heís using.
I do agree with the use it or lose it idea. Yet he doesnít talk about how much rest, or whether itís ok to have some discomfort while carrying on. I am finding that the rest Iím taking is not making much of a difference, an some days it seems to make thing worse.
SuspectDevice, I am hoping (againj for your thoughts here! :)
Thanks for replying!!!
This forum is so motivating and inspiring.
I am not going to PT every week now. Pt wants  me to come once in 2 weeks. So,it's just home program now.
Are you going to the pt? How you keep your progress on? You do the exercises everyday?















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