Over a year and frustrated

[kawi_girl]

Brandon123,
Thanks for your thoughts. I have tried a course of Advil and I found it didn’t 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 isn’t 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 I’m 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, I’m not convinced yet I’ll continue with them anyway. Just in case!

[Aly0108]

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 don’t 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.

[Aly0108]

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

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

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.

[Userhere123]

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. Don’t 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 latéral 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.

[Userhere123]

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?

[Userhere123]

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

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

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.

[Userhere123]

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 don’t 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.

[Aly0108]

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 don’t 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 “lateral pelvis tilt” . 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.

[Kneegrump]

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

[kawi_girl]

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 doesn’t produce a flare up. I’m 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 it’s hard not to focus on what you used to do, isn’t 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 I’m 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 I’m also considering selling my motorcycle, as I’m not sure when or if I’ll be able to ride comfortably again. I do worry about leg strength, which I need to ride as I’m 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.

[Kneegrump]

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 don’t 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 Kelsey’s 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 “Laurie Kertz Kelly” she is a PT who practices Doug Kelsey’s 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

[kawi_girl]

Al,
I’m happy for you, it sounds like you are making better progress than I am at the moment.

Yes, I watched Laurie’s YouTube video, that’s how I discovered I was being too aggressive and now I’m gently bringing the quad sets back. I’m 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. I’ve 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 Bedard’s book “Saving My Knees”).

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-it’s like there are some movements that my tissues find intolerable. Yet the MRI showed nothing of the sort.

I’m hoping that I’m 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, I’ll pay for it later. It’s figuring out what “too far” is...

What I find strange is despite the thought that movement protects your knees I am dealing with this. I’ve been active all my life, it’s part of who I am. It’s sounds like you can identify with that. I do feel strongly that it’s 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.

[Kneegrump]

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

 

[kawi_girl]

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.

I’ll be curious to hear if CBD oil has any affect on your comfort/healing, if you wouldn’t mind posting occasionally about that. All I’ve done so far is make sure I continue to eat a very healthy diet. I haven’t found that to be difficult as I’ve 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 I’ve 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 I’ve 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 I’m 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.

[SuspectDevice]

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.