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Author Topic: PFJPS - really bad  (Read 3829 times)

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Offline adamas

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Re: PFJPS - really bad
« Reply #30 on: March 22, 2018, 11:10:23 PM »
Whatís your specific issue? PFS?

Yes, it is PFS on both knees. I had MRIs on both knees that show grade 1 chondromalacia patellae, but according to one knee OS I saw and to the PT, it is the tissue around the patella that is inflamed and causes pain, rather than being due to cartilage loss (grade 1 is just softening of the cartilage) or arthritis.

After having done some reading on this forum, I really think that Dr. Dye's theory about loss of tissue homeostasis is the real culprit. In my case, I am not actually getting more pain when walking, going up or down stairs or doing leg press, leg extension and other exercises. I have a rather constant burn on the medial side of the knees and what really increases it is prolonged sitting (regardless of keeping the legs bent or straight) and, even worse, driving.

One of the knee OS I saw proposed me a set of two PRP shots on both knees, that should help having an anti-inflammatory effect.

Yup, sounds like a classic case of Dr Dye loss of tissue homeostasis to me, esp. the burning pain.  I had 3x PRP in both knees and really it did nothing, so don't waste your $'s.  A long-term course of Celebrex was the key to breaking the inflammation cycle, but you say you can't take them.  That leaves only the Richard Bedard 'Saving My Knees'/Paul Ingrham PFPS option - avoiding everything...EVERYTHING! that aggravates them, but do enough gentle movement to let them heal.  Sounds like gentle walking is OK for you which is great news, as that was a big part of my recovery regime (20-30mins easy each morning).  I also sat at my desk with legs extended on a box for years - still do mostly.  Be very careful with strengthening exercies - I'm not saying don't do them, but by trial and error work out which ones aggravate & don't do them, and which ones you can get away with.  You might be surprised, for example deadlifts were OK for me, but any kind of squatting (except sissy squats) or seated leg extensions were bad.

I want to give PRP a go, the response is highly individual (as with every therapy actually) and so it may work for someone and not work for others.

I read the blogs about the experience of those two guys and how they improved their condition. Unfortunately, it is very discomforting and it is not something that I could afford. It would mean to give up my independence, as I live on my own and I have no one that could help me in daily matters, and basically my career and life.

I think that I found what my triggers are now. It is mostly sitting, driving or anyway keeping the legs in the same position for long times. Regardless of keeping the legs bent, straight or at any angle in between, the burning starts after 30 minutes.

Instead, unlike many people, walking and leg strengthening exercises, both with machines (leg press and leg extension) or isometric leg raises, do not cause me pain neither during nor after the activities. Actually I was on holiday a month ago and I spent three days walking the whole day visiting towns (on average 3-4 hours of effective walking) and I was completely pain-free for the whole time and even afterwards until I got back to my office job!

Do you know if Dr. Dye offers remote consultations? Living in Europe I cannot see him personally, but I would be happy to have a phone consultation.
Do you know what his fees are?

« Last Edit: March 22, 2018, 11:12:47 PM by adamas »

Offline adamas

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Re: PFJPS - really bad
« Reply #31 on: March 22, 2018, 11:15:32 PM »
I went to see Claire and she was extremely informative and such a nice lady. She mentioned having a high riding patella which was not well supported by the muscles , so in her opinion strengthening was the way to go , cos if  not the patella would just keep impinging the fat pad and other structures. I'll give this a go for a while and see how I get on. She's adjusted my exercises so hopefully this does not cause any pain.  Thanks for your recommendation vickster

How was your experience with Claire? I live in England and I am thinking of seeing her myself. Hope it is worth the very high fees...

Has she said anything about PRP injections? I am struggling in finding anyone in the UK who is knowledgeable about that.


Claire is very knowledgeable and I really do recommend her. I have seen a lot of progress since I saw her. I am not where I want to be yet but I've seen so much progress. She gave an overall opinion and then  reccomended another physiotherapist that she works with, and the two of them are working on my progress. So Ill definitely say go see her first before seeing other doctors.

I did enquire about PRP at Fortius Clinic. They thought the evidence was neither here nor there, but it couldn't do any harm were there thoughts. They do PRP but it was expensive. I didn't go ahead with it.

Thanks for the feedback, I am going to see her. What exercises did she suggest for your situation?

Regarding PRP, do you recall how much the clinic charges for a shot?

I do exercises to build my calf muscles, gluten, and quads, using blood flow restriction training which helps to build muscles really quickly. If you need the actual names let me know.  As I build muscle, the exercieses change.

Single leg bridge 10reps x 4 (both sides) Ė no rest between
Sit to stand - full range 10reps x 6sets, 30secs recovery between sets, cuff up to 100mmgh for the entire time

Seated heel raises 50reps x 2 Ė weight on the knees Ė only tap the heels on the floor, feet behind the line of the knees - weight on the knees 2 x 12kg+
1 leg calf 25reps each side  x 4 - weight in the hand of the stance leg

Step back lunge with hands on the kitchen side 15-25reps each side x 4

Single leg stand 45secs on 1 leg, 15secs recovery x 4 with the cuff up to 100mmgh for the entire time

Cant remember the cost so I suggest you call the clinic. were I to guess, it was over £1,000.

Interesting, thanks.

Did Claire suggested blood flow restriction training? I was not aware of it, can you notice the difference compared to regular training?

I would be interested in trying it, but I guess that it is better to do it under the guidance of a PT at first, rather than DIY. What cuff do you use?
« Last Edit: March 22, 2018, 11:21:54 PM by adamas »

Offline Vickster

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Re: PFJPS - really bad
« Reply #32 on: March 23, 2018, 08:12:22 AM »
Go see Claire and see what she says. Everyone is different, physio should be personalised especially in chronic scenarios

To your other post, I don't see the point of a phone consult with someone thousands of miles away? What can any surgeon definitively say without examination to check alignment, tracking, muscle, your feet etc etc etc , especially if you have nothing obvious showing on MRI?
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline SuspectDevice

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Re: PFJPS - really bad
« Reply #33 on: March 23, 2018, 08:52:40 AM »

I want to give PRP a go, the response is highly individual (as with every therapy actually) and so it may work for someone and not work for others.

I read the blogs about the experience of those two guys and how they improved their condition. Unfortunately, it is very discomforting and it is not something that I could afford. It would mean to give up my independence, as I live on my own and I have no one that could help me in daily matters, and basically my career and life.

I think that I found what my triggers are now. It is mostly sitting, driving or anyway keeping the legs in the same position for long times. Regardless of keeping the legs bent, straight or at any angle in between, the burning starts after 30 minutes.

Instead, unlike many people, walking and leg strengthening exercises, both with machines (leg press and leg extension) or isometric leg raises, do not cause me pain neither during nor after the activities. Actually I was on holiday a month ago and I spent three days walking the whole day visiting towns (on average 3-4 hours of effective walking) and I was completely pain-free for the whole time and even afterwards until I got back to my office job!

Do you know if Dr. Dye offers remote consultations? Living in Europe I cannot see him personally, but I would be happy to have a phone consultation.
Do you know what his fees are?

Yeah, fair enough, give the PRP a go if you want.  It is supposed to have an anti-inflammatory action, and that is what you need.  It just didn't work for me, I needed something longer term (5-6mths on Celebrex).

I agree, the Bedard & Ingraham solutions are a big sacrifice.  I couldn't do them either to the extent they did/recommend as I could not quit my job, but they got me on the right track (i.e. try as best I could to avoid things that aggravate & be more patient).

I found the same - gentle walking for hours on holidays actually made mine feel better - esp gentle wading in cool water while fly-fishing in NZ - but once I got back to the office it was a different story.

I live in Australia, so have never been to or had a remote consult with Dr Dye.  But I read/watched a lot of his work which got me on the right track.
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!
2019 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline adamas

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Re: PFJPS - really bad
« Reply #34 on: March 23, 2018, 12:38:11 PM »
Go see Claire and see what she says. Everyone is different, physio should be personalised especially in chronic scenarios

To your other post, I don't see the point of a phone consult with someone thousands of miles away? What can any surgeon definitively say without examination to check alignment, tracking, muscle, your feet etc etc etc , especially if you have nothing obvious showing on MRI?

Well, you are right, there's no point in a phone consultation for knee issues actually.

I booked an appointment with Claire for early next month, thanks for the suggestion. I have high hopes...

Offline adamas

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Re: PFJPS - really bad
« Reply #35 on: March 23, 2018, 12:46:23 PM »

I want to give PRP a go, the response is highly individual (as with every therapy actually) and so it may work for someone and not work for others.

I read the blogs about the experience of those two guys and how they improved their condition. Unfortunately, it is very discomforting and it is not something that I could afford. It would mean to give up my independence, as I live on my own and I have no one that could help me in daily matters, and basically my career and life.

I think that I found what my triggers are now. It is mostly sitting, driving or anyway keeping the legs in the same position for long times. Regardless of keeping the legs bent, straight or at any angle in between, the burning starts after 30 minutes.

Instead, unlike many people, walking and leg strengthening exercises, both with machines (leg press and leg extension) or isometric leg raises, do not cause me pain neither during nor after the activities. Actually I was on holiday a month ago and I spent three days walking the whole day visiting towns (on average 3-4 hours of effective walking) and I was completely pain-free for the whole time and even afterwards until I got back to my office job!

Do you know if Dr. Dye offers remote consultations? Living in Europe I cannot see him personally, but I would be happy to have a phone consultation.
Do you know what his fees are?

Yeah, fair enough, give the PRP a go if you want.  It is supposed to have an anti-inflammatory action, and that is what you need.  It just didn't work for me, I needed something longer term (5-6mths on Celebrex).

I agree, the Bedard & Ingraham solutions are a big sacrifice.  I couldn't do them either to the extent they did/recommend as I could not quit my job, but they got me on the right track (i.e. try as best I could to avoid things that aggravate & be more patient).

I found the same - gentle walking for hours on holidays actually made mine feel better - esp gentle wading in cool water while fly-fishing in NZ - but once I got back to the office it was a different story.

I live in Australia, so have never been to or had a remote consult with Dr Dye.  But I read/watched a lot of his work which got me on the right track.

Wow, 5-6 months on Celebrex is a lot. Didn't you have any side effects?

I have also started swimming (crawl), hoping to build up again some cardio fitness, which I lost since I had to stop running and hiking completely after PFS started. Before I was running 3-4 times per week and doing a lot of uphill hiking and mountain climbing in the summer, which I now believe is what triggered PFS. As I used to do a lot of cardio activity, the lack of endorphins release in these past months really dragged me into depression.

Offline Vickster

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Re: PFJPS - really bad
« Reply #36 on: March 23, 2018, 04:24:19 PM »
Iíve been taking Celebrex for over 2 years now with omeprazole (100-200mg a day). My GP and rheumatologist are keen for me to stop taking it but I have multiple joint issues causing pain and stiffness all over. Iíve found oral steroids relatively useful for inflammation but again stopping these due to the undesirable long term effects (which I donít have yet)
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline neptronix

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Re: PFJPS - really bad
« Reply #37 on: March 24, 2018, 12:55:07 PM »
I have also started swimming (crawl), hoping to build up again some cardio fitness, which I lost since I had to stop running and hiking completely after PFS started. Before I was running 3-4 times per week and doing a lot of uphill hiking and mountain climbing in the summer, which I now believe is what triggered PFS. As I used to do a lot of cardio activity, the lack of endorphins release in these past months really dragged me into depression.

I would consider cycling on a stationary bike on a very low power setting. Give it a try for a few days. Works great for me to relieve knee inflammation. I cannot walk because of my limb deformity, that just ramps up the inflammation, but on a bike, your legs are not subject to gravity so much, and can get moving even if they are biomechanically screwed.

A stationary bike is the closest thing to a poor man's continuous passive motion machine. Check out this study where the continuous passive motion machine ends up creating anti inflammatory substances in the knee. Pretty interesting stuff.
https://www.ncbi.nlm.nih.gov/pubmed/17157538

Offline SuspectDevice

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Re: PFJPS - really bad
« Reply #38 on: March 26, 2018, 01:49:54 AM »

I want to give PRP a go, the response is highly individual (as with every therapy actually) and so it may work for someone and not work for others.

I read the blogs about the experience of those two guys and how they improved their condition. Unfortunately, it is very discomforting and it is not something that I could afford. It would mean to give up my independence, as I live on my own and I have no one that could help me in daily matters, and basically my career and life.

I think that I found what my triggers are now. It is mostly sitting, driving or anyway keeping the legs in the same position for long times. Regardless of keeping the legs bent, straight or at any angle in between, the burning starts after 30 minutes.

Instead, unlike many people, walking and leg strengthening exercises, both with machines (leg press and leg extension) or isometric leg raises, do not cause me pain neither during nor after the activities. Actually I was on holiday a month ago and I spent three days walking the whole day visiting towns (on average 3-4 hours of effective walking) and I was completely pain-free for the whole time and even afterwards until I got back to my office job!

Do you know if Dr. Dye offers remote consultations? Living in Europe I cannot see him personally, but I would be happy to have a phone consultation.
Do you know what his fees are?

Yeah, fair enough, give the PRP a go if you want.  It is supposed to have an anti-inflammatory action, and that is what you need.  It just didn't work for me, I needed something longer term (5-6mths on Celebrex).

I agree, the Bedard & Ingraham solutions are a big sacrifice.  I couldn't do them either to the extent they did/recommend as I could not quit my job, but they got me on the right track (i.e. try as best I could to avoid things that aggravate & be more patient).

I found the same - gentle walking for hours on holidays actually made mine feel better - esp gentle wading in cool water while fly-fishing in NZ - but once I got back to the office it was a different story.

I live in Australia, so have never been to or had a remote consult with Dr Dye.  But I read/watched a lot of his work which got me on the right track.

Wow, 5-6 months on Celebrex is a lot. Didn't you have any side effects?

I have also started swimming (crawl), hoping to build up again some cardio fitness, which I lost since I had to stop running and hiking completely after PFS started. Before I was running 3-4 times per week and doing a lot of uphill hiking and mountain climbing in the summer, which I now believe is what triggered PFS. As I used to do a lot of cardio activity, the lack of endorphins release in these past months really dragged me into depression.

No side-effects from Celebrex at all.

I hear you about the lack of exercise endorphins & depression too.
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!
2019 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline Jasey122

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Re: PFJPS - really bad
« Reply #39 on: March 26, 2018, 10:03:49 AM »
The physio working with Claire suggested this new form of training. As to whether it is better doing it without it, I don't know . It's better to see someone here as a physical examination is important as a first call.















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