KNEEtalk

The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: kawi_girl on December 22, 2019, 11:40:22 PM

Title: Over a year and frustrated
Post by: kawi_girl on December 22, 2019, 11:40:22 PM
I was in a MVA last year, hit by an oncoming vehicle that crossed the Centre line. Complained about right knee pain upon admission yet main focus was a broken pelvis. When I started getting active again, soon after my right knee started hurting. Saw my doctor many times and went through lots of PT for patella femoral pain, due to possible muscle imbalances. Did this PT for 7 months with no real change. Now waiting for an MRI (xrays inconclusive) Am told perhaps a meniscus tear. Iím at the end of my rope! Bad days I canít do much, good days I can maybe walk two kilometers or bike 6 kilometers. Still always have an awareness that something is not right.
I wish I knew what was going on!
Any thoughts out there? I also just needed to vent I guess.:(
Title: Re: Over a year and frustrated
Post by: Vickster on December 23, 2019, 08:15:03 AM
Wait and see what the MRI shows. Do be prepared for it to show nothing (if it could be PFS) , arrange to see a knee specialist (maybe another specialised in PFS if needed) to discuss the findings and next steps.

Good luck
Title: Re: Over a year and frustrated
Post by: kawi_girl on December 24, 2019, 01:19:53 AM
Thanks for your reply. Can PFS get so bad that some days itís hard to walk? I made it through my workday with a sore knee yet this evening I am limping around the house. It just feels like itís getting worse lately. A bad flare up?
Title: Re: Over a year and frustrated
Post by: Ruby.P on January 11, 2020, 11:36:31 AM
Sorry to hear what you are going through and yes pfs can get so bad that it's hard to walk - I'm right now about to start my exercises but scared as yesterday they set off a full day of pain - I'd previously been really optimistic as had a few good days - one incorrect movement can start it all off again - my knees are the last thing i think about before i go to sleep and the first thing when i wake - its draining but I will fight on regardless x
Title: Re: Over a year and frustrated
Post by: kawi_girl on January 24, 2020, 07:42:28 PM
Thanks for your reply. The MRI showed possible fat pad impingement. This could result from the patella not tracking well. What I find frustrating is how am I supposed to do PT if I am in pain? Yet that is the treatment so far. My doctor did give me an injection of cingal yesterday, so far today it just hurts more. :(
Title: Re: Over a year and frustrated
Post by: Vickster on January 24, 2020, 07:50:10 PM
Has your physio taped the patella into the right position and away from the fat pad. Are you icing the fat pad area to reduce any swelling.
What's Cingal? A steroid? It'll probably hurt for a week or so (that's normal) and then hopefully it'll feel better as the inflammation subsides.

Edit-it's steroid plus hyaluronic acid? Do you have arthritis?
Although a combo can help with more general inflammation, and dryness in the joint. In my experience, I've had a few (HA and steroid, not together), it'll be sore for a good few days and then if (no guarantees) it's going to help, it'll take a month to have an effect which should then last a good while
Title: Re: Over a year and frustrated
Post by: kawi_girl on January 24, 2020, 08:21:08 PM
Hello! Thank you for your reply.
Yes, Cingal is hyaluronic acid and a steroid. I do not have arthritis (at least not that has been diagnosed) My dr. (He is an orthopedic surgeon-and a very good one) was hoping it would help me to deal with the chronic inflammation. He said yesterday that he could feel (when doing the injection) that my knee capsule was very hard (sign of it being very Ďangryí)
Yes, I do ice my knee. It does offer some relief yet the inflammation has been going on for so long that it didnít seem to have any lasting effect. Hard to do PT if Iím in pain.
My last PT did tape my patella, which seemed to help a lot initially and then suddenly did not. It has been like that for all (3) PT programs I have followed. Initially things seem promising and then back to increased pain. My knee has never been swollen, which seems bizarre. Yet the medial side has a burning feeling within it. If that makes sense. I know that one has to be dedicated to the program and put the work in, and I can honestly say I did everything that I was told to do, religiously. That is what makes this so frustrating, itís not like I have been expecting a magic bullet yet even all the work and time has not paid off.
Sigh.
I hope that your thought about the injection working eventually is correct. Then I can at least get back to PT-I will be seeing a very experienced team so perhaps Iíll have some luck. I need to have hope or Iíll sink deeper into depression than I already am.
Title: Re: Over a year and frustrated
Post by: Vickster on January 24, 2020, 08:37:52 PM
Do try to ice the knee a couple of times a day (x15 mins) now you've had the jabs to deal with what sounds like a post jab / steroid flare

I saw a PF expert physio a couple of years ago, very familiar with fat pad issues, she advised me to focus icing on the fat pad area, oil the skin with bio oil and rub an ice cube around the area for 5-10 minutes, keep the cube moving on the slippery skin to avoid burn :)

Do you use a topical inflammatory gel (in UK it's called Voltaren), assuming there's no reason to avoid NSAIDs of course, try that a couple of times a day to see if it helps.  I use the stronger one myself on various sore bits including the knee
Title: Re: Over a year and frustrated
Post by: kawi_girl on January 24, 2020, 08:50:46 PM
Thanks for your suggestions. I will do some icing twice as day as youíve recommended.

I have used Voltaren for a hip injury before yet hated the smell. I have eaten Advil like candy, and am worried about using too much so trying to stick to ice and only use NSAIDS on occasion. I do find that Advil doesnít always help anyway...these knee issues can be strange.
Title: Re: Over a year and frustrated
Post by: Vickster on January 24, 2020, 09:17:33 PM
Ah, I quite like the smell of Voltaren! And it's quite effective for localised inflammation. My rheumatologist is a proponent over orals

If you use oral NSAIDs, make sure you take with a PPI like omeprazole (Losec in US). Maybe you could try a stronger one, like Naproxen or Celebrex (under Dr supervision of course)
Title: Re: Over a year and frustrated
Post by: kawi_girl on January 25, 2020, 02:33:48 AM
Yes, I havenít explored the stronger NSAID yet, guess itís just a journey at this point as to what works.

Hoping Iíll start to feel less pain tomorrow and this is just a steroid flare. Ice in the meantime.
Perhaps getting used to the voltarin smell will be something Iíll just have to face. Maybe Iíll go nose blind after a while ;)
Title: Re: Over a year and frustrated
Post by: Userhere123 on February 20, 2020, 11:32:20 AM
Yes, I havenít explored the stronger NSAID yet, guess itís just a journey at this point as to what works.

Hoping Iíll start to feel less pain tomorrow and this is just a steroid flare. Ice in the meantime.
Perhaps getting used to the voltarin smell will be something Iíll just have to face. Maybe Iíll go nose blind after a while ;)
Hi,
How do you feel now?
I am going through the same thing. PFS for past 6 months. Going to PT for past 3 and a half months and no improvement yet. Is the same burning pain and swelling.
I don't have how to proceed with. I would like to know if you had any luck. What helps in your case?
Title: Re: Over a year and frustrated
Post by: kawi_girl on February 22, 2020, 05:50:35 PM
Yes, I havenít explored the stronger NSAID yet, guess itís just a journey at this point as to what works.

Hoping Iíll start to feel less pain tomorrow and this is just a steroid flare. Ice in the meantime.
Perhaps getting used to the voltarin smell will be something Iíll just have to face. Maybe Iíll go nose blind after a while ;)
Hi,
How do you feel now?

Hello! Thanks for your reply and Iím 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 Ďfullí 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, Iím 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 itís going to be a long journey....
Title: Re: Over a year and frustrated
Post by: SuspectDevice on February 24, 2020, 04:22:41 AM


Hello! Thanks for your reply and Iím 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 Ďfullí 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, Iím 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 itís 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  ;D).  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.
Title: Re: Over a year and frustrated
Post by: Userhere123 on February 24, 2020, 09:13:17 AM
Yes, I havenít explored the stronger NSAID yet, guess itís just a journey at this point as to what works.

Hoping Iíll start to feel less pain tomorrow and this is just a steroid flare. Ice in the meantime.
Perhaps getting used to the voltarin smell will be something Iíll just have to face. Maybe Iíll go nose blind after a while ;)
Hi,
How do you feel now?

Hello! Thanks for your reply and Iím 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 Ďfullí 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, Iím 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 itís going to be a long journey....
Yes. It's going to be a long journey.
I have been dealing with this for past 6 months. The same level of burning pain. PT doesn't help much. It's been 4 months of PT. Changed to a new PT now. The new PT tried aggressive dry needling in the thigh and upper knee area. Had 3 sessions of dry needling. It doesn't help much. He still want to try few more to see if it really works for me or not.  I have given the foam rolling and other stretching/strengthening exercises.
I have a scar tissue from my childhood on the same knee where I am having the pain. PT worked on the scar tissue too. He did with dinner needle kind of thing on those scar tissue.
I feel more sore after that. I really don't know if I need more dry needling or this needling for scar tissue.
How often do you get pain? I get pain whenever I bend my knees and stretch straight. Sometimes while standing. It's kind of burning pain right above the knee and on the lateral side. Hope we get some relief soon.
Title: Re: Over a year and frustrated
Post by: Userhere123 on February 24, 2020, 09:25:01 AM


Hello! Thanks for your reply and Iím 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 Ďfullí 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, Iím 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 itís 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  ;D).  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?
Title: Re: Over a year and frustrated
Post by: SuspectDevice on February 24, 2020, 09:28:13 PM


Hello! Thanks for your reply and Iím 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 Ďfullí 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, Iím 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 itís 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  ;D).  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.
Title: Re: Over a year and frustrated
Post by: Userhere123 on February 25, 2020, 12:14:02 AM


Hello! Thanks for your reply and Iím 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 Ďfullí 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, Iím 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 itís 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  ;D).  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.
Title: Re: Over a year and frustrated
Post by: kawi_girl on February 25, 2020, 01:41:45 AM
SuspectDevice:
Congrats on the 2nd place finish! A win if you ask me. You have fought back hard, Iíve 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 Ďinflamedí 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 arenít all well, to a deep ache in my knee (s), almost like itís 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. Iíve 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! Hereís 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. (Thatís 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 donít know if itís all correct yet there are a few different approaches out there, just look for the common thread. And I do support Ďactive restí 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. Itís a fine line. Inform yourself as much as you can, donít 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 Iím learning that PFP is more a blanket term for anterior knee pain that doesnít fit into another category...yet perhaps you need a second or third opinion. I still stand by the Ďarm yourself with knowledgeí idea.
Title: Re: Over a year and frustrated
Post by: Userhere123 on February 25, 2020, 09:49:42 PM
SuspectDevice:
Congrats on the 2nd place finish! A win if you ask me. You have fought back hard, Iíve 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 Ďinflamedí 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 arenít all well, to a deep ache in my knee (s), almost like itís 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. Iíve 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! Hereís 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. (Thatís 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 donít know if itís all correct yet there are a few different approaches out there, just look for the common thread. And I do support Ďactive restí 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. Itís a fine line. Inform yourself as much as you can, donít 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 Iím learning that PFP is more a blanket term for anterior knee pain that doesnít fit into another category...yet perhaps you need a second or third opinion. I still stand by the Ďarm yourself with knowledgeí 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.
Title: Re: Over a year and frustrated
Post by: SuspectDevice on February 26, 2020, 09:56:00 AM
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.
Title: Re: Over a year and frustrated
Post by: kawi_girl on February 29, 2020, 03:00:52 PM
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.

Donít know if my previous level of activity is in my future yet I have to try this.
Title: Re: Over a year and frustrated
Post by: SuspectDevice on February 29, 2020, 09:21:19 PM
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.

Donít 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.
Title: Re: Over a year and frustrated
Post by: kawi_girl on February 29, 2020, 11:36:03 PM
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.

Donít 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.
Title: Re: Over a year and frustrated
Post by: SuspectDevice on March 01, 2020, 09:26:48 AM
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.

Donít 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.
Title: Re: Over a year and frustrated
Post by: kawi_girl on March 01, 2020, 05:26:04 PM
So, to continue on my journey I have purchased ĎSaving My Knees,í 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 Iím 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 donít 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...
Title: Re: Over a year and frustrated
Post by: kawi_girl on March 01, 2020, 10:05:41 PM
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 havenít more PTís got on this bandwagon? Now, the book did make sense to me and I agree with a lot of it.

Itís just that if the evidence points that the ďtraditional ď way of treating PFP is not working well, wouldnít 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, itís 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 Iím afraid Iím doing too much of that now, and should be walking more.

Any one experiencing their own doubts regarding what they are trying?
Title: Re: Over a year and frustrated
Post by: SuspectDevice on March 02, 2020, 09:43:03 PM
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 havenít more PTís got on this bandwagon? Now, the book did make sense to me and I agree with a lot of it.

Itís just that if the evidence points that the ďtraditional ď way of treating PFP is not working well, wouldnít 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, itís 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 Iím afraid Iím 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.
Title: Re: Over a year and frustrated
Post by: kawi_girl on March 02, 2020, 10:11:13 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.
Title: Re: Over a year and frustrated
Post by: SuspectDevice on March 03, 2020, 04:17:27 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?
Title: Re: Over a year and frustrated
Post by: kawi_girl 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.
Title: Re: Over a year and frustrated
Post by: SuspectDevice 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.
Title: Re: Over a year and frustrated
Post by: kawi_girl 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 :'(
Title: Re: Over a year and frustrated
Post by: Userhere123 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.. 
Title: Re: Over a year and frustrated
Post by: Userhere123 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??
"
Title: Re: Over a year and frustrated
Post by: kawi_girl 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.
Title: Re: Over a year and frustrated
Post by: SuspectDevice 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.
Title: Re: Over a year and frustrated
Post by: kawi_girl 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?
Title: Re: Over a year and frustrated
Post by: Userhere123 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.
Title: Re: Over a year and frustrated
Post by: Userhere123 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?
Title: Re: Over a year and frustrated
Post by: SuspectDevice 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.
Title: Re: Over a year and frustrated
Post by: SuspectDevice 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.
Title: Re: Over a year and frustrated
Post by: Userhere123 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.
Title: Re: Over a year and frustrated
Post by: kawi_girl 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! :)
Title: Re: Over a year and frustrated
Post by: Userhere123 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?
Title: Re: Over a year and frustrated
Post by: kawi_girl on March 11, 2020, 11:53:05 PM
Yes, I am going to PT, usually once a week. Thatís just for a follow up,and some modalities and we talk about things that are working and things that arenít. I also research and bring ideas for her to consider and we decide if itís worth trying. Much different than my previous visits to physio, I was more hopeful then and have tried 3 other 6 plus week programs. The last one I did for 12 weeks. Itís not like I thought the PFP would be completely gone yet I never had even a bit of lasting improvement. So this time I am getting much more involved, informed and asking way more questions.
Between visits I follow a home program. We are going to try some exercises every second or third day now, yet when I do them work to 70% muscle fatigue. The idea is to have a rest day in between as rest is part of making gains. There are some things I will still do everyday.
I feel like an experiment!
Title: Re: Over a year and frustrated
Post by: Userhere123 on March 18, 2020, 11:25:01 AM
Yes, I am going to PT, usually once a week. Thatís just for a follow up,and some modalities and we talk about things that are working and things that arenít. I also research and bring ideas for her to consider and we decide if itís worth trying. Much different than my previous visits to physio, I was more hopeful then and have tried 3 other 6 plus week programs. The last one I did for 12 weeks. Itís not like I thought the PFP would be completely gone yet I never had even a bit of lasting improvement. So this time I am getting much more involved, informed and asking way more questions.
Between visits I follow a home program. We are going to try some exercises every second or third day now, yet when I do them work to 70% muscle fatigue. The idea is to have a rest day in between as rest is part of making gains. There are some things I will still do everyday.
I feel like an experiment!
It's awesome that you doing a research any trying new things.
I was going to a PT before, where I blindly trust her and go with the things she said. I went to that pt for about 14 visits i.e around 3 and a half months. No improvement in my symptoms. I never been to PT before. So, I just trusted her and she only gave me basic strengthening exercises.
Then I switched to a different PT. He tried aggressive dry needling for quad and scar tissue. He revised my home exercises and his approach was completely different.
He tried various things in the clinic and told me to do exercises at home. My previous pt ask me to come twice a week, the new PT ask me to come in once in 2 weeks.
The new PT also tried foam rolling. So, that gives new discomfort and pain in the knee. He said it's good that it makes some changes inside rather nothing.
So,I don't know what else to try.  I am just doing the exercises everyday. How often you get pain?
My pain is like burning pain throughout the day and night. Whenever I sit, stand and lie down. So, it's been throughout the day. The same level of burning pain. No changes in the pain from day 1.
Due to the current Coronavirus situation, PT office having tele appointments. So I am not going to PT. Best keeping up with home exercises. 
Title: Re: Over a year and frustrated
Post by: Userhere123 on March 18, 2020, 11:25:34 AM
Yes, I am going to PT, usually once a week. Thatís just for a follow up,and some modalities and we talk about things that are working and things that arenít. I also research and bring ideas for her to consider and we decide if itís worth trying. Much different than my previous visits to physio, I was more hopeful then and have tried 3 other 6 plus week programs. The last one I did for 12 weeks. Itís not like I thought the PFP would be completely gone yet I never had even a bit of lasting improvement. So this time I am getting much more involved, informed and asking way more questions.
Between visits I follow a home program. We are going to try some exercises every second or third day now, yet when I do them work to 70% muscle fatigue. The idea is to have a rest day in between as rest is part of making gains. There are some things I will still do everyday.
I feel like an experiment!
It's awesome that you doing a research any trying new things.
I was going to a PT before, where I blindly trust her and go with the things she said. I went to that pt for about 14 visits i.e around 3 and a half months. No improvement in my symptoms. I never been to PT before. So, I just trusted her and she only gave me basic strengthening exercises.
Then I switched to a different PT. He tried aggressive dry needling for quad and scar tissue. He revised my home exercises and his approach was completely different.
He tried various things in the clinic and told me to do exercises at home. My previous pt ask me to come twice a week, the new PT ask me to come in once in 2 weeks.
The new PT also tried foam rolling. So, that gives new discomfort and pain in the knee. He said it's good that it makes some changes inside rather nothing.
So,I don't know what else to try.  I am just doing the exercises everyday. How often you get pain?
My pain is like burning pain throughout the day and night. Whenever I sit, stand and lie down. So, it's been throughout the day. The same level of burning pain. No changes in the pain from day 1.
Due to the current Coronavirus situation, PT office having tele appointments. So I am not going to PT. Just keeping up with home exercises. 
Title: Re: Over a year and frustrated
Post by: kawi_girl on March 18, 2020, 04:44:19 PM
Yes, my PT has also been cancelled and I donít have the online option so Iím just continuing on my own.
My pain is worse in my right than the left, and lately feels like my knee is full of pressure and there is pain with bending with a load, so up and down stairs is difficult. The pain will fluctuate over the coarse of the day. I use ice at least three times a day for 20 minutes and that seems to finally have started to reduce the inflamed feeling that I experience. That is after over a month of icing in that manner, and I say that itís somewhat improved yet my answer there is guarded.
I am trying a different approach to my hip and leg strengthening in that I do reps and sets to about a 7/10 muscle fatigue yet have at least a days rest in between. So different exercises each day with some days having more to do than others.
Quad sets are done everyday, to help with my synovial fluid...the idea there is to help heal the joint. Iím told that can take up to two months before any improvements may start to show.
As I may have mentioned before, itís just one big experiment yet I donít feel completely blind as Iím basing my plan on lots of research and keeping in mind all the things Iíve tried that havenít been successful.
Title: Re: Over a year and frustrated
Post by: SuspectDevice on March 29, 2020, 07:51:36 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! :)

My path was pretty much just a random wander in the park!

I did not have the Kelsey equipment either (the Total Gym) but was able to rig up something in the gym which was similar.  But I didn't stick at it for long as it did not seem to be helping.

Then, once things felt a bit better due to the Celebrex, I started doing my own things which were a much heavier load than he was suggesting (i.e. deadlifts, kettlebell swings, sissy squats using a frame for balance).  I only did those things 2-3x/week max, and I got some discomfort during, and pain after, but I persisted out of frustration of having lost so much strength.  After maybe 6-12mths, I saw good improvements, and have kept up those heavier sessions 2x/week.
Title: Re: Over a year and frustrated
Post by: kawi_girl on March 31, 2020, 10:49:05 PM
ďRandom wander in the park...Ē that sounds about right!
Iím finding that every bit of information I read, I have some take away from it (I am trying the 100 times a day quad sets Doug Kelsey promotes) while still customizing what works for me.

Ever heard of blood restriction training? Seems to be a way to gain strength easier when you are injured. I havenít tried it, Iím just reading about it at this point.

What a journey.
Title: Re: Over a year and frustrated
Post by: Userhere123 on April 01, 2020, 01:54:45 PM
ďRandom wander in the park...Ē that sounds about right!
Iím finding that every bit of information I read, I have some take away from it (I am trying the 100 times a day quad sets Doug Kelsey promotes) while still customizing what works for me.

Ever heard of blood restriction training? Seems to be a way to gain strength easier when you are injured. I havenít tried it, Iím just reading about it at this point.

What a journey.
100 times a day quad sets? What's that?
My pt office is closed for past few weeks and I am just doing my home exercises.
What are the quad , hip and leg strengthening exercises you are doing?
My daily home.program is,
1. Foam rolling thigh area
2. Isometric ball extension
3.side step band
4. Hip flexion elastic
5.calf stretch straight
6.piriformia stretch
7.stablisation Superman
8.proprioception unilateral
9.Stretching piriformis
10. Alternate heel tap
11.hip abduction
12. Glute bridge with ball squeeze
And few exercises for my hand and shoulders. I got some issues in my hand later on. Looks like mild tennis elbow/shoulder bursitis. So, doing those exercises along with this.
Is there any other exercises required for Patella subluxation and alta? PFPS.
Title: Re: Over a year and frustrated
Post by: Vickster on April 01, 2020, 02:19:37 PM
This is a quad set and how to do

https://www.kneeguru.co.uk/KNEEnotes/primers/a-z-rehabilitation-exercises/quad-sets
Title: Re: Over a year and frustrated
Post by: kawi_girl on April 03, 2020, 11:31:01 PM
Thanks, Vickster, for providing the link for quad sets.

Userhere123, I do the quad sets up to 100 times a day (in sets of 10-so 10 on each side about every hour since my knee pain is bilateral). It is not for quad strength, it is to improve the quality of the synovial fluid. Iím probably repeating myself here!

Otherwise, I am slowly doing less strengthening exercises than ever before, and focusing more on frequent, gentle movement of my knee joints. So every 20 minutes I will get up and walk around 70-100 steps or so (if Iíve been resting). Best position for my knees is stretched out, yet I can tolerate some time in a 90 degree bend position. I am also ďallowedĒ to go outside for a 1000 step walk, at a slow pace. Focusing on using my glutes more when I walk-so smooth, controlled and gentle. Three days a week I do core strength and hip strength, with a day off. On the days off I do straight leg work and an arm workout. The quad sets and movement regimen is everyday.

I am of the belief that I need to heal my joints first before any major strengthening can happen, and by the movement and walking (which I will slowly increase) I will stay strong enough to be ready for more, later. When I do the above mentioned exercises, I try to do them to a 7/10 muscle fatigue. Coupled with a proper rest day in between I think that this may be more effective. In the past I was doing a fairly advanced hip/glute/hamstring/quad routine everyday-yet in the end it did not help. I did that for over 12 weeks, so I would say thatís  a fair try!
Title: Re: Over a year and frustrated
Post by: Userhere123 on April 04, 2020, 07:00:08 AM
Thanks, Vickster, for providing the link for quad sets.

Userhere123, I do the quad sets up to 100 times a day (in sets of 10-so 10 on each side about every hour since my knee pain is bilateral). It is not for quad strength, it is to improve the quality of the synovial fluid. Iím probably repeating myself here!

Otherwise, I am slowly doing less strengthening exercises than ever before, and focusing more on frequent, gentle movement of my knee joints. So every 20 minutes I will get up and walk around 70-100 steps or so (if Iíve been resting). Best position for my knees is stretched out, yet I can tolerate some time in a 90 degree bend position. I am also ďallowedĒ to go outside for a 1000 step walk, at a slow pace. Focusing on using my glutes more when I walk-so smooth, controlled and gentle. Three days a week I do core strength and hip strength, with a day off. On the days off I do straight leg work and an arm workout. The quad sets and movement regimen is everyday.

I am of the belief that I need to heal my joints first before any major strengthening can happen, and by the movement and walking (which I will slowly increase) I will stay strong enough to be ready for more, later. When I do the above mentioned exercises, I try to do them to a 7/10 muscle fatigue. Coupled with a proper rest day in between I think that this may be more effective. In the past I was doing a fairly advanced hip/glute/hamstring/quad routine everyday-yet in the end it did not help. I did that for over 12 weeks, so I would say thatís  a fair try!
Thank you!!!
Did you do this one quad set( towel under the knee and pressing it) exercise for 100 times a day?? That's really awesome!!! I had this quad set exercise when I started PT in the month of November. Then PT removed this exercise from my program after 2 weeks. So, I am not doing this quad set.
I have few exercises and I do only few sets and repetitions. My total exercises time is 30 minutes including foam rolling.
I do only once a day.
I also did other strengthening exercises for more than 12 weeks and nothing helps. What I am wondering is, none of the exercises improves my symptoms. I still have the same burning pain and swelling. I can't sleep everyday because it burns whenever u stretch my legs out and bend. So, I can't sit and sleep.  I even had a virtual visit with another Ortho from another country recently. They reviewed my MRI and said it looks normal. And they are not sure why I am getting the pain and swelling still.
I don't know how to proceed further. PT office is also closed. So only home exercises now. 
Have you tried foam rolling? I don't know if it helps or aggravate more. I am doing the foam rolling for past 3 weeks. Twice a week only. For about 2 minutes.
I feel the pain is now more after the foam rolling. I don't know if it's good or I should stop doing it. PT is also not reachable. So I am just doing foam rolling twice a week. My thigh and it band have become so hard now. Previously it used to be loosen after the strengthening/stretching exercises.
My previous PT used to tell me that it has to loosen up and she tried a lot to loosen up the quad. Now, it's hard again after the foam rolling. I am with another PT now.
Do anyone tried foam rolling? Does it really help?
Title: Re: Over a year and frustrated
Post by: kawi_girl on April 05, 2020, 02:46:43 AM
Yes, the quad sets I do most people put a towel underneath their knee, I use a small, soft fitness ball for the same effect. It takes some dedication to get them all done through the day yet they are not hard to do, and Iím home now anyway. Supposed to (hopefully) start having results in about 2 months. Iím one month and 5 days in, so I guess Iíll see!

I can relate to doing all those exercises and have pretty much no result, frustrating, isnít it? I had been using a foam roller yet I donít really think it has been helping. I am not sure even about stretching, I may drop that for now, too. I think what has helped the most so far is rest, and the gentle frequent movement. Also, for a whole month I was icing my knees three times a day, for 20 minutes a shot. I bought a pair of really good runners just to wear in the house to help absorb shock while I carefully walk around. It sounds like you may have some sort of inflammation going on, I have read some people talking about that burning being inflamed synovial lining. (That would be the lining of the joint capsule of your knees) I think that I have some of this too, yet havenít explored the NSAIDS route yet. Others have taken NSAIDS for a period of time to finally break out of the inflammation. I am hesitant to do so, yet may still explore that option-nothing is off the table yet!
As a guide, i would suggest you buy a pedometer. They arenít completely accurate yet can give you a good idea of your movement patterns. For instance, I notice if I go above 3800 steps that I can expect to be sore that evening or the next day. So I try to keep it under that amount, and plan to slowly nudge that number up. Thatís what I am finding with knees. You have to nudge them gently along. Expect some resistance yet one hopes to slowly get there.
One hint with the foam roller that MAY help-those for whom it has worked for, talk about going very slowly and stopping when you get to a painful/tight spot and let your weight do the work. Kind of like Active Release Therapy, if you are familiar with that.
Keep on, my friend. Continue to research as much as you can, you have to be your own advocate for your knees to recover, I think there are many cases that just get the standard treatment PTs learn. You need to think outside the box.
Title: Re: Over a year and frustrated
Post by: Aly0108 on April 05, 2020, 07:10:09 AM
Hi All!! Before you started exercise, you have to check your pelvis. If you have a high hip lateral, you will have rotation of femur and tibia.
I had a lot issues with fat pad. Donít try to strengthen you quad.
You have to mobilize you hip.
It is not knee issues, it is your hip issues.
Dont try strengthening your muscles before you find your cause. You will make things worse. Feel your body.
Take a look to your ITB , lateral side vastus latťral both side.
Take a look to your foot.
You have to know all muscles external rotation and internal rotation. What muscle you have to work to have good tibia and femoral rotation.
My suggestion is to start with your pelvis, the most important think.
Title: Re: Over a year and frustrated
Post by: kawi_girl on April 06, 2020, 05:10:30 PM
Aly0108,
This is a good point that you made, and there is a chance that something like this is going on with me, at least it could be part of the puzzle. My left hip is Ďflattenedí a bit due to the iliac wing fracture and does appear to sit lower. So itís either because of that or that combined with overloading the right leg when I couldnít use the left.
I am not doing the quad sets for strength, but for synovial fluid (to help with the quality of it)
That being said, these past few days I am sad to say that the quad sets are becoming a wee bit painful on the right, and I may quit with them for a bit. I am discouraged by this as I was hoping it could help yet I need to continue for another month. If I canít, that is another experiment failed.
Sigh.
Anyone else who wants to chime in with some advice I would appreciate it. Thinking about Celebrex now. Been also using Voltaren for the past week. Doesnít smell as bad as I remember, thank goodness!
Title: Re: Over a year and frustrated
Post by: Brandon123 on April 08, 2020, 12:00:03 PM
Kawi_girl,

Maybe you should give NSAIDs a try? You could test for 1-2 weeks and see what happens. If you do not have any stomach issues of course... In that case, it might be a bad idea. But even with a good stomach, I think it is a good idea to take proton pump inhibitors (PPIs) at the same time. Consult a doctor if you're unsure whether you can safely try NSAIDs. Even if they will not cure your knee issues long-term, you will most likely experience relief short-term while taking them. And we all just need a (knee pain) break sometimes  :)
Title: Re: Over a year and frustrated
Post by: Aly0108 on April 09, 2020, 08:28:06 PM
Kawi girl

Exercice who help me :
1 clamshell glutes medius
2.strech biceps Femoris( very important because this muscle attaches tibia and can rotate out)
3. Loosing muscles vastus lateral with massage balls
4. Strech calves
5 walking
6. Massage triggers points

Also, the most important to check your pelvis. If you have hike hip, that meat you have to stretch QL muscles .

Title: Re: Over a year and frustrated
Post by: kawi_girl on April 10, 2020, 01:41:18 AM
Brandon123,
Thanks for your thoughts. I have tried a course of Advil and I found it didnít really help, and stopped due to it being hard on my system. I spoke with both my PT and doctor this week and they encourage ice and voltaren gel. No Celebrex. The burning feeling I get isnít 24/7 so they feel this is the better approach. Been resting and slow walking. Trying not to get too much of either.

I had to stop with the quad sets I was trying, they started to bother my right knee. So Iím hoping the walking is enough to lubricate those poor joints.

Aly0108,
Oddly I just added some internal rotation exercises to the ones I do already. Some target similar areas that you mentioned.
At this point, I honestly feel that the slow walking with resting is perhaps the answer. Maybe some targeted exercises too, Iím not convinced yet Iíll continue with them anyway. Just in case!
Title: Re: Over a year and frustrated
Post by: Aly0108 on April 10, 2020, 06:03:04 AM
Kawi girl

Listen your knees, if you have inflammation, you need to treat inflammation, walking will increase more inflammation. I understand your frustration, I had the same issue with my knees. My knees was inflamed, my fat pad was crazy painful. I want to tell you, The PTs donít understand this condition, your pain, etc.
You have to start very slowly.
You have to stop strengthening your quads, hamstrings. This theory about VMO is wrong.
Put more accent on your glutes. You need a good specialist to check your pelvis, this is very important thing.

Start slowly like a baby, 1 minute walking, 30 minutes resting.
Before you walk, massage you vastus lateral and stretch biceps Femoris.
Strengthen your glutes medius.
Stretch calves.
Massage your adductors.

Title: Re: Over a year and frustrated
Post by: Aly0108 on April 10, 2020, 06:19:05 AM
SuspectDevice:
Congrats on the 2nd place finish! A win if you ask me. You have fought back hard, Iíve 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 Ďinflamedí 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 arenít all well, to a deep ache in my knee (s), almost like itís 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. Iíve 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! Hereís 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. (Thatís 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 donít know if itís all correct yet there are a few different approaches out there, just look for the common thread. And I do support Ďactive restí 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. Itís a fine line. Inform yourself as much as you can, donít 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 Iím learning that PFP is more a blanket term for anterior knee pain that doesnít fit into another category...yet perhaps you need a second or third opinion. I still stand by the Ďarm yourself with knowledgeí idea.



Please never use foam roller on ITB and quads, ITB can not be loose.
Massage vastus lateral both side of ITB, but not rolling ITB. You can use a massage ball.

Fat Pat is very hard to treat, it need a lot rest.

Title: Re: Over a year and frustrated
Post by: Userhere123 on May 10, 2020, 06:44:27 AM
Hi All!! Before you started exercise, you have to check your pelvis. If you have a high hip lateral, you will have rotation of femur and tibia.
I had a lot issues with fat pad. Donít try to strengthen you quad.
You have to mobilize you hip.
It is not knee issues, it is your hip issues.
Dont try strengthening your muscles before you find your cause. You will make things worse. Feel your body.
Take a look to your ITB , lateral side vastus latťral both side.
Take a look to your foot.
You have to know all muscles external rotation and internal rotation. What muscle you have to work to have good tibia and femoral rotation.
My suggestion is to start with your pelvis, the most important think.
Hi,
I just saw this thread today.
Thanks for the hint about the hip. My pt once told me that my right side hip to ankle alignment and my gait is different.
She said my ankle is outwards. But she did not mention anything like hip causing my knee issues.
My way of walking or taking steps is different in that leg. My right leg (pain leg). I take step sideways and bring back to front. This I got to know from my PT.
I have been having constant burning pain for past 9 months with swelling. Not going to PT but since lockdown.
Doing home exercises along with foam rolling. My PT told me to do foam rolling on quads and right side of the leg. That doesn't help either.
There is no improvement in my symptoms.
I badly want to have some relief from this constant knee pain.
Just keeping up with exercises and trying free new exercises for my ITB on my own.
I have sent pm to you.
Title: Re: Over a year and frustrated
Post by: Userhere123 on May 10, 2020, 06:48:10 AM
Kawi girl

Exercice who help me :
1 clamshell glutes medius
2.strech biceps Femoris( very important because this muscle attaches tibia and can rotate out)
3. Loosing muscles vastus lateral with massage balls
4. Strech calves
5 walking
6. Massage triggers points

Also, the most important to check your pelvis. If you have hike hip, that meat you have to stretch QL muscles .
How do we check our pelvis? I am not very expert in the medical terms which you have shared. I am very naive in these. How do we self check if it's pelvis issue?
Title: Re: Over a year and frustrated
Post by: Userhere123 on May 10, 2020, 06:52:44 AM
SuspectDevice:
Congrats on the 2nd place finish! A win if you ask me. You have fought back hard, Iíve 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 Ďinflamedí 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 arenít all well, to a deep ache in my knee (s), almost like itís 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. Iíve 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! Hereís 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. (Thatís 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 donít know if itís all correct yet there are a few different approaches out there, just look for the common thread. And I do support Ďactive restí 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. Itís a fine line. Inform yourself as much as you can, donít 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 Iím learning that PFP is more a blanket term for anterior knee pain that doesnít fit into another category...yet perhaps you need a second or third opinion. I still stand by the Ďarm yourself with knowledgeí idea.



Please never use foam roller on ITB and quads, ITB can not be loose.
Massage vastus lateral both side of ITB, but not rolling ITB. You can use a massage ball.

Fat Pat is very hard to treat, it need a lot rest.
How do we do massage in vastus lateral?
I need googled now which part of the body is this.
I have been told my pt to foam roll the ITB if required. I am not doing it since it's very painful for me. I do foam rolling on quads and that's very painful too.
Title: Re: Over a year and frustrated
Post by: Userhere123 on May 10, 2020, 07:03:04 AM
Kawi girl

Listen your knees, if you have inflammation, you need to treat inflammation, walking will increase more inflammation. I understand your frustration, I had the same issue with my knees. My knees was inflamed, my fat pad was crazy painful. I want to tell you, The PTs donít understand this condition, your pain, etc.
You have to start very slowly.
You have to stop strengthening your quads, hamstrings. This theory about VMO is wrong.
Put more accent on your glutes. You need a good specialist to check your pelvis, this is very important thing.

Start slowly like a baby, 1 minute walking, 30 minutes resting.
Before you walk, massage you vastus lateral and stretch biceps Femoris.
Strengthen your glutes medius.
Stretch calves.
Massage your adductors.
Thanks for this reply here. It's very helpful for people like me.
I will Google about the stretches who have mentioned.
I have swelling along with the burning pain. The swelling doesn't reduce in the past 9 months. It's same level of burning pain and swelling from day 1. Even swelling is increased in the past week. Before that it used to be the same level.
Since I have swelling and burning pain, my pt told me that I have Inflammation. I was taking NSAIDs for a week. That hurts my stomach and doctor told me to stop it.
I still have that inflammation. How did you recover from your pain and Inflammation? Share your inputs please.
Title: Re: Over a year and frustrated
Post by: Aly0108 on May 11, 2020, 05:26:16 PM
Kawi girl

Listen your knees, if you have inflammation, you need to treat inflammation, walking will increase more inflammation. I understand your frustration, I had the same issue with my knees. My knees was inflamed, my fat pad was crazy painful. I want to tell you, The PTs donít understand this condition, your pain, etc.
You have to start very slowly.
You have to stop strengthening your quads, hamstrings. This theory about VMO is wrong.
Put more accent on your glutes. You need a good specialist to check your pelvis, this is very important thing.

Start slowly like a baby, 1 minute walking, 30 minutes resting.
Before you walk, massage you vastus lateral and stretch biceps Femoris.
Strengthen your glutes medius.
Stretch calves.
Massage your adductors.
Thanks for this reply here. It's very helpful for people like me.
I will Google about the stretches who have mentioned.
I have swelling along with the burning pain. The swelling doesn't reduce in the past 9 months. It's same level of burning pain and swelling from day 1. Even swelling is increased in the past week. Before that it used to be the same level.
Since I have swelling and burning pain, my pt told me that I have Inflammation. I was taking NSAIDs for a week. That hurts my stomach and doctor told me to stop it.
I still have that inflammation. How did you recover from your pain and Inflammation? Share your inputs please.


Hi,

Inflammation of knee is very hard to treat. Stop to use foam roller on your ITB, you make more worse as good. ITB is a ligament who is attached by two muscles. Outside of your right leg is very tight because inside (your adductor) is very weak.   When you walk your left glutes are weak, right glutes and outside of your right leg becomes tight. To check you pelvis google ďlateral pelvis tiltĒ . It takes long time to fix it, because your muscles memorized your biomechanics posture.
If you have high hip- lateral tilt pelvis, you have to strengthen only weak glutes medius on one side, not both glutes, to drop down your hip, to stabilize your pelvis.
Exemple: if you have left high hip, you have to strengthen your left glutes medius and loose right glutes medius with stretch.
Adducteurs are very important here: left adductor is tight, need to be loose with strech.
Right adductors are weak, need to be strengthen.
Strech you calf, because they are very tight.

Your foot turn out because you have femoral rotation, caused by weak glutes medius and tight adductors.

Title: Re: Over a year and frustrated
Post by: Kneegrump on May 30, 2020, 12:25:37 PM
Hi Kawi_girl/userhere123,

I have been following this particular thread for a while now, as like you I have PFPS. My symptoms pretty much tally up with Kawi_girl's symptoms.

I was a keen cyclist up until a year ago when I over did things on a cycling raid of the Massif Central region of France (Last June).

I have been to see 1 sports doctor,  2 PT, and 2 Orthopods. The sports doctor recommended I see PT, who made things worse by strengthening the quads, VMO etc etc. Both surgeons gave different opinions as to what was wrong with my knees. I have had 4 sets of MRIs (3 of my knees and one of my lower back). The second PT was supposed to be a PFPS specialist (her diagnosis was an inflamed fat pad), all I got from her was to ice the front of my knee, and gradually increase my activities. That made my symptoms even worse, looking back I think all the icing into the fat pad area was just irritating the tissues/nerves in the tissues. Stopped all that. This also agrees with the theory for chronic pain that icing prevents tissues repair. Interestingly I have found a heat pad to be good for pain in my knees.

I have also come across the teachings of Scott F Dye and Doug Kelsey - Envelop of function. Makes perfect sense to me.

All I have been doing since December is just increasing my walking gradually trying not to get an inflammatory response ( I am up to about 7000 steps a day - in total.) I also do sliders (Doug Kelsey style) and quad sets every day. But I make sure nothing is causing pain, if I get a flare up I scale back and start from a lower level. The most important thing is not to invoke an inflammatory response, which is quite hard because the inflammatory response is often delayed, I often have to think back what could have possibly caused it.

I have noticed my symptoms ease gradually and I would say I am about 30% better than last December, I only get the occasional flare up during the day, and I can now sit at my desk for up to an hour with very little symptoms. The constant burning has rescinded which is a relief. But it has been a long and patient process to get this far. Luckily I have been able to work from home, so I have not had to make the grinding commute into central London.

The more I read into this the more I am convinced it is a tissue overload problem, for which the only solution is letting the body try and heal itself within a reduced envelope of function, i.e. Scott F. Dye. Personally I think if all goes well I am looking at at least another year perhaps longer to fully recover - hopefully

 I long for the day when I can ride my bike again - hopefully sometime in the future. I hope this has been of some help.

Al

Title: Re: Over a year and frustrated
Post by: kawi_girl on May 30, 2020, 06:40:35 PM
Hi Al

Although I am sorry for your struggles it is helpful to hear from someone going through similar challenges. If you look at the threads under the patellofemoral joint in this forum I give a more detailed update of my current status.

To summarize, I am still struggling and like yourself trying to keep my step count to a level that doesnít produce a flare up. Iím only at around 4000 steps, yet I do about 2 or 3 gentle kilometers on my bike. Which sounds so pathetic! I so desperately want to ride my bike pain free again, and itís hard not to focus on what you used to do, isnít it? When I think of how much I used to ride I could just cry.

Do you have some pain when you walk or can you do it symptom free? Sometimes my left knee feels pretty good (only superficially though, if I increase the load with stairs or a squat it would hurt) yet my right knee always has some level of discomfort. I tried to rest it down to no pain when moving yet never got there, and I feel it needs some load and gentle movement so I carry on.

I tried the sliders, yet they somehow irritated things. Quad sets started to hurt so I had quit them, yet I discovered that I was doing them too aggressively, have modified them and now I do 30 a day in sets of 10, spaced out and will add 10 more each week with the goal of 100 a day again. How many have you been doing?

I do a lot of resting in between activities as well, so it takes a long time to finish housework and such which can be frustrating. For example, weeding my yard and spring tidy up took 2 weeks, and before would have accomplished in one afternoon. The highlights of the day are my walk and little bike ride. I do try and make sure Iím not sitting too long though, and get up to move every 15 or 25 minutes, depending on how sore my knees are that day.

At this point Iím also considering selling my motorcycle, as Iím not sure when or if Iíll be able to ride comfortably again. I do worry about leg strength, which I need to ride as Iím not a very big person!

May I ask how old you are? I turned 49 this year. Have always felt way younger than my age, until now. I feel so much older, or at least my knees do.

Cheers, and thanks for your reply.
Title: Re: Over a year and frustrated
Post by: Kneegrump on May 30, 2020, 11:23:58 PM
Hi Kawi_girl,

I am 53, and until this year I was really active, probably clocking up to 250 miles a week on the bike. Oh well.

With respect to my walking, I am pretty much pain free, sometimes the odd fullness feeling in one of my knees. However, they do not feel normal, they feel a bit weak and fragile with the sensation if you walk too far they will start to inflame up. I tend to get the pain spike a few hours after the event rather than during my walk if I over do things. But I remember back in January I was walking with some pain in one of the knees, but that has has gone away now when I am actually walking.

Recently, I have been taking plain old aspirin, two tablets in the morning and two in the evening. Personally I have found it to be more effective than ibuprofen and naproxen. I donít know why. But I think it has kept a lid on the inflammation any way my knees have started to feel a lot better.

With respect to quad sets. After reading Doug Kelseyís book I thought I should be able to pump out 100 or so easily. But I found if I did too many my knees blew up. So at the moment I am doing only 8 reps 5 times a day. I do them gently, by having a rolled up bath towel behind the knee. That stops you putting too much pressure ion the joint. You can find you tube videos on this, search for ďLaurie Kertz KellyĒ she is a PT who practices Doug Kelseyís ideas. With sliders, I just so 2 to 3 mins each knee 5 times a day. I am very gradually building these reps up. If I get a flare up, I take it down a notch and then slowly build it back up.

It is just learning where your envelope of function is (simpler said than done) and trying to gradually increase it. I have just bought an inclined plane with the idea of doing squats at a percentage of body weight. This is the next big step for me. Also, before COVID lock down I was getting some benefit from walking on a treadmill at about 10% incline in the gym. I felt myself get stronger, and I even got some burn in the old muscles! I found walking on an incline takes the pressure off the front of the knee, which is where most of my pain is.

Al
Title: Re: Over a year and frustrated
Post by: kawi_girl on May 31, 2020, 12:08:37 AM
Al,
Iím happy for you, it sounds like you are making better progress than I am at the moment.

Yes, I watched Laurieís YouTube video, thatís how I discovered I was being too aggressive and now Iím gently bringing the quad sets back. Iím just having a hard time finding my envelope of function as I always feel either a little bit of discomfort, or a fair bit of discomfort/pain. I probably made things worse by trying to work through the pain for as long as I did. Iíve only started to really scale back since this past March (although, by that time I had already scaled back activity-work was the last to go. I decided that after reading Richard Bedardís book ďSaving My KneesĒ).

I have heard that walking on an incline can be helpful for some, a shame you lost that opportunity. Where did you purchase the incline plane?

One thing I find is that I can be standing and working in the kitchen, turn in a certain way and get a jolt of pain in my knee-itís like there are some movements that my tissues find intolerable. Yet the MRI showed nothing of the sort.

Iím hoping that Iím just healing very slowly rather than just found a way to tolerate this!

The other thing I find odd is that sometimes walking makes me feel better! Yet if I go too far, Iíll pay for it later. Itís figuring out what ďtoo farĒ is...

What I find strange is despite the thought that movement protects your knees I am dealing with this. Iíve been active all my life, itís part of who I am. Itís sounds like you can identify with that. I do feel strongly that itís an overload of the joint(s)...yet I always felt my joints were strong and resilient. Guess just a perfect storm of causes can set things out of wack.
Title: Re: Over a year and frustrated
Post by: Kneegrump on May 31, 2020, 12:31:35 PM
Hi Kawi_giril,

I also read Richard Bedard's book, last October and I realised I had exactly the symptoms as him, continuous burning pain behind the knees. At that point I realised I needed to off load my knees totally which meant  working from home. I also realised I was in serious sh*t with the knees and there was no easy way out of this. However, I tried to convince myself that perhaps the problem was with my fat pad (or fat pad impingement) because most of my pain was at the front below the patellar. So I started to seek out surgeons who might give me a quick fix, i.e. remove any inflamed tissue. But there was no definite diagnosis given and I wasn't going to risk surgery on the off chance that they might find something. So by March, I had come to the conclusion that I was in this for the long haul, and I was going to take possibly years to recover (if at all). Some ways I have kind of accepted it, but then I see a peloton of cyclists on the road and I return to the gloom and darkness of knee pain bah humbug!

I have found that my pain shifts around the knee, sometimes it is below the patellar, sometimes it is medial and lateral, and also above the patellar. I think this is consistent with inflamed (or irritated) synovium.

If I think back to what I was like in December my knees are a lot better, at least I am not in constant burning pain all the time. My knees are basically a bit tingly most of the time, with the odd flare up, which I control with a heat pad.

I am about to try CBD oil, to see if that has a positive effect.

I think (hopefully) I now have the inflammation under control to a certain extent at least. But it has taken me nearly 8 months! Now I need to start building up the strength in the joint (very gradually) this is why I have started to go down the Doug Kelsey route. Hence why I brought an variable inclined plane. In the UK we seem to have only one make of inclined plane a TotalGym. Not sure what country you are in, but I am guessing US. If so you have plenty to choose from TotalGym, TotalTrainer, Gr8flex. You need one with a large baseplate. Again Laurie Kertz Kelly has a youtube video on how to choose one. I paid about 300 UK pounds.

With respect to walking, I have also found this to be soothing for the joint. But I feel I have reached a plateau with the effectiveness of walking especially on the flat.

Al

 
Title: Re: Over a year and frustrated
Post by: kawi_girl on May 31, 2020, 04:46:09 PM
Al, I really appreciate all your input. It has been a bit of a mental boost for me.

I am very determined to get better, yet I realize it may take far longer than I would like.

Iíll be curious to hear if CBD oil has any affect on your comfort/healing, if you wouldnít mind posting occasionally about that. All Iíve done so far is make sure I continue to eat a very healthy diet. I havenít found that to be difficult as Iíve always followed more of a Mediterranean style diet anyway. I have been adding more turmeric to my veggie stir fries as that is supposed to be anti inflammatory. Other than that, no supplements, not even vitamins. Figure I get all I need from food and sunshine. I would be willing to explore supplements, if they were proven to work.

I am not in the US, I live in western Canada. So anything I would order from the US would be pricey, yet I guess if it would help with healing it would be worth it. One more source of info that Iíve read are the writings of Paul Ingraham, check out PainScience.com, he has a whole ebook on PFPS. He is a former massage therapist from Vancouver, BC, Canada and a big sceptic, so his writings involve a lot of research. His stuff is worth reading I think, and he does talk about the need for rest and to work within your limits.

Interesting that you find heat to be helpful. When my knees were really flaring up before I quit work, ice was the only thing that calmed them. Oddly though, they almost always feel better after a hot shower, and Iíve also found voltaren to be quite helpful. I am currently doing a bit a massage as well, either using the Graston technique or just my thumbs, working around the patella with careful avoidance of the bursae. It seems to help, yet it could just be because it alters sensations or distracts from the soreness for a while. I generally do this once a day, before the little ride on my bike.

I still think I have further to go before Iím ready for loading exercises, the goal is to comfortably up my step count first.

Good luck with the incline trainer, it sounds to me as though you are also very determined and dedicated to healing.
Title: Re: Over a year and frustrated
Post by: SuspectDevice on June 04, 2020, 11:10:24 PM
Hi Kawi_giril,

I also read Richard Bedard's book, last October and I realised I had exactly the symptoms as him, continuous burning pain behind the knees. At that point I realised I needed to off load my knees totally which meant  working from home. I also realised I was in serious sh*t with the knees and there was no easy way out of this. However, I tried to convince myself that perhaps the problem was with my fat pad (or fat pad impingement) because most of my pain was at the front below the patellar. So I started to seek out surgeons who might give me a quick fix, i.e. remove any inflamed tissue. But there was no definite diagnosis given and I wasn't going to risk surgery on the off chance that they might find something. So by March, I had come to the conclusion that I was in this for the long haul, and I was going to take possibly years to recover (if at all). Some ways I have kind of accepted it, but then I see a peloton of cyclists on the road and I return to the gloom and darkness of knee pain bah humbug!

I have found that my pain shifts around the knee, sometimes it is below the patellar, sometimes it is medial and lateral, and also above the patellar. I think this is consistent with inflamed (or irritated) synovium.

If I think back to what I was like in December my knees are a lot better, at least I am not in constant burning pain all the time. My knees are basically a bit tingly most of the time, with the odd flare up, which I control with a heat pad.

I am about to try CBD oil, to see if that has a positive effect.

I think (hopefully) I now have the inflammation under control to a certain extent at least. But it has taken me nearly 8 months! Now I need to start building up the strength in the joint (very gradually) this is why I have started to go down the Doug Kelsey route. Hence why I brought an variable inclined plane. In the UK we seem to have only one make of inclined plane a TotalGym. Not sure what country you are in, but I am guessing US. If so you have plenty to choose from TotalGym, TotalTrainer, Gr8flex. You need one with a large baseplate. Again Laurie Kertz Kelly has a youtube video on how to choose one. I paid about 300 UK pounds.

With respect to walking, I have also found this to be soothing for the joint. But I feel I have reached a plateau with the effectiveness of walking especially on the flat.

Al

Exactly the same as me Al

I'm 8 years down the track and much improved.  6mths on Celebrex to knock down the chronic synovial inflammation was the key for me to making progress, but it took me about 5yrs to work this out.  Now cycling hard up to 2hrs.  Even doing a little running.  Introducing hip/hammy/glute etc. strength training was also important, but you can only start that once you get to a certain level of inflammation control, else you will go backwards.  I now think that a lack of strength in these areas probably was the root cause of my knees imploding (too much pressure on the knee joints during triathlon training/racing as supporting muscles were not taking enough of the load).

Oh & icing for 15-20mins also important in the evenings after exercise.
Title: Re: Over a year and frustrated
Post by: Kneegrump on June 05, 2020, 12:06:10 AM
Hi suspect device,

I have seen quite a few of your posts and it seems you have have had the same problem as me, basically tissue overload. For me it was 6 days of continuous cycling 100 miles a day with 3000m of climbing each day. I suspect The lack of recovery between each day and my age counted against me. I now believe as you get older you need more recovery time. Also as you I suspect my Glutes were relatively weak, resulting all the force through my knees.

Anyway as you have said there is no quick fix for this. It is a slow tortuous process of increasing the load tolerance of the knees. On an optimistic note, I hope to be recovered within a year. But I think it is impossible to say for sure Probably depends much on your genetics and age as to how quickly you can recover.

Interestingly, I have started to use CBD oil as a way of keeping a lid on the inflammation. It is early days but it appears to be having a positive effect. But it is not cheap!

Al
Title: Re: Over a year and frustrated
Post by: kawi_girl on June 07, 2020, 03:47:36 PM
Al,

Hope the CBD oil continues to have a positive effect. I just got a CDB massage stick, itís supposed to help with soreness and inflammation yet honestly I donít know if it has enough CBD in it to make a difference. These products arenít regulated so the strength of each is all over the board.

Unfortunately this past week I have experienced a bad flare up, mostly in the right yet the left has seen happier days. Itís times like this where it truly feels that there is damage in there, so much medial pain/burning and it also feels like something is going on with the tendons/muscles that run along the medial side. Itís so hard to know for certain. My MRI suggested some fat pad impingement (as I have previously mentioned) yet palpating my fat pad on either side of the tendon under the kneecap produces no pain. I guess the muscles along the medial side could be referred pain...

The scary part is I almost think Iím worse than last year at this time, unless my tolerance for discomfort has gotten less. Not to mention, I am less active than last year! Have you gone through something like this, on your journey to heal?
Title: Re: Over a year and frustrated
Post by: kawi_girl on August 03, 2020, 04:34:59 PM
Thought I would give an update and bump my own thread.

Very discouraged today. Thought I was finally making progress in the last few weeks and then had a huge flare up last night, with my left knee being worse, I needed to get up at midnight to ice it. It seems that my left knee is nw as bad as the right.

Where did I go wrong? I am getting SO SICK of limited ability, doing special exercises everyday, all to no real result.

I feel like Iíll be stuck with this forever.

I could really use some encouragement right now😢
Title: Re: Over a year and frustrated
Post by: kneegeek2020 on August 03, 2020, 06:25:17 PM
Hey kawi-girl.  If you have the money and your issues is inflammation look into lipogems.  I'm 7 weeks post op.  Prior to lipogems, I had a revolving set of six 3m icepacks and had to ice every hour.   As soon as my knees took the cold from one icepack, I'd apply the next.  Knees were on fire.  As of now, I no longer have to use icepacks.
 
NSAIDS, euflexxa, steroids-absolutely nothing worked.  I also had some cracking in my distal patella pole that was cause issues with pain and gaining strength and as of now it no longer cracks. 

I know it's been a long time for you but I'm almost 3 years into my journey-I understand your pain.  Lipogems will cost you an arm and leg if you go that route, insurance doesn't cover it, and you would have to travel to get it done (i traveled 4 hours and paid 4,000 dollars).  Most places don't do it and some places charge EXORBITANT prices.  PM me if you want me to point you in right direction.

The jury still out on how long this will last but I think it will be permanent- there were cells injected into my knees and they are obviously doing something good.

ps-i'd be highly skeptical about marijuana oil doing anything for inflammation.  These things just don't transfer through the skin very well, same will voltaren nsaid gel

GL
Title: Re: Over a year and frustrated
Post by: kawi_girl on August 05, 2020, 02:46:43 AM
Hey kneegeek2020

Thanks for your reply! Lipogems-Iíll have to do some research on that. What was your original diagnosis? PFPS?

Sounds very expensive, I donít know if itís an option to be honest. Although if the outcome is good that might make it worth looking into. I appreciate you sharing that. Hope itís totally successful for you.