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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 12390 times)

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Online BusterCatLegs

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #210 on: August 10, 2018, 01:01:59 PM »
Yeah, I've only been dealing with pain for 4-5 months and it was for the most part gone while resting the last week. I have been so not active that it's scary- going to start with 1 sad little leg lift every other day. What a grueling workout! Ha. Gosh my life has changed. Will probably avoid quad sets for a while since so many people can't tolerate them.

The last time I rested for a week all the pain went away and I was back to normal. This time resting didn't bring me back to normal 100% but pretty close. So I guess I have no choice but to work with what I have.


Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #211 on: August 10, 2018, 07:25:52 PM »
The reason I do quad sets is because SLRs give me some amt of hip pain so my physio thought it better to do the quad sets, and I must say I have noticed an improvement since I started these physio moves.

Online BusterCatLegs

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #212 on: August 10, 2018, 08:21:20 PM »
When we say quad sets are we talking squeezing the quads with legs down or lifting each leg alternately?

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #213 on: August 11, 2018, 02:21:56 PM »
Squeezing the quads with legs down. the only reason i think they're working for me is not because of the strengthening (yet) but because i'm learning to activate the muscle. but SLRs may be better tolerable for many?

Offline Strongknees

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #214 on: October 09, 2018, 10:34:12 PM »
Hi everyone,

I spent the last hour reading this thread. Thanks for the useful information.

How is everyone?

My injury occurred in April 2017. My knee started aching after a football match. I rested for some Months and then tried sports again which made things worse.
My MRI is negative. Did PT for many months, but the anterior knee pain never improved. I finally saw Claire Robertson who diagnosed me wih fat pad impingement. My main symptoms are: random pinching on the lateral side of the patella when walking, limited ROM (i can but i am not comfortbale bending the knee more than 90 degrees), cannot stand for more than 1 minute before being in big discomfort. The commute to work is very difficult as I have to stand for several minutes.

Currently i am doing very gentle physio (straight leg raises, clam shells, core exercises) and icing the area twice a day. Also tried some laser therapy with almost no results. I do limited walking, probably around 5000/6000 steps a day. Canít really do stairs downhill.

I read Paul Ingraham ebook and his  suggestion to rest but it seems the consensus here is against total rest? How do I get rid of the inflammation if I donít rest though! I havenít been succesful so far. I am willing to try a period of rest but I am worried my mobility might further reduce? I am in pain now, but I can still walk and manage it somehow. I canít imagine being worst than this!

i am also a bit confused... if my issue is fat pad impingement, does Paul Ingraham ebook still apply? And also Dr. Dye recommendations? Or do they only cover PFPS?

Thanks for your help.

Online BusterCatLegs

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #215 on: October 12, 2018, 06:11:22 PM »
It's been a while since I've posted an update. I did total rest for a good 2-3 weeks and then started walking again every other day. I started with 500 steps on active days and have been working on regaining flexibility for the last two months. I just started physical therapy and am doing range of motion exercises and very simple stretching. I even rode a bike for 3 minutes today.

The total knee burning sensation has been gone for a while now. I have had some pretty bad fat pad impingement feelings for a long time and those seem to have finally resolved in my left knee and are on and off in my right knee....

Total rest seems a bit drastic but that's what I did. I have no idea if it is the right answer or not. I am definitely not recovered yet so....who knows!

I do think you probably need to go through a period of more rest than not for soft tissue injuries to heal and 5000 steps a day may just be too much.

Offline Strongknees

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #216 on: October 12, 2018, 08:14:05 PM »
Good point. since that message I have reduced my walking. Probably I am at 2000 steps per day. but i am just guessing because i am not using an app. i think i walk no more than 2km per day, so thatís porbably 2-3000 steps. Weekends I rest more. But i keep doing some Gentle exercises and starting a new program with a new PT on Tuesday.

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #217 on: October 15, 2018, 02:50:59 AM »
I wanted to give a bit of an update on my condition. Things are overall improving, but it is still very hard and I have long way to go. I'm getting up to about 3k a day, but I still have pain. Usually it is tolerable (like in the 0-4 range), but once every 1-2 weeks I will have an exacerbation and walk a bit less for a day or 2 and skip physio, then it settles. My physio is Straight leg raises, hip abduction, glute squeezes, and core activation as well as knee stretching. I take celebrex, gabapentin, fish oil, curcumin, and glucosamine/chondroitin. I ice my knees about 3-4 x daily and use capsaicin cream. I practice increasing my step count by 5-10% per week. I have a lot of difficulties sitting as well and am starting to practicing more of this.

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #218 on: October 15, 2018, 03:16:38 PM »
I wanted to give a bit of an update on my condition. Things are overall improving, but it is still very hard and I have long way to go. I'm getting up to about 3k a day, but I still have pain. Usually it is tolerable (like in the 0-4 range), but once every 1-2 weeks I will have an exacerbation and walk a bit less for a day or 2 and skip physio, then it settles. My physio is Straight leg raises, hip abduction, glute squeezes, and core activation as well as knee stretching. I take celebrex, gabapentin, fish oil, curcumin, and glucosamine/chondroitin. I ice my knees about 3-4 x daily and use capsaicin cream. I practice increasing my step count by 5-10% per week. I have a lot of difficulties sitting as well and am starting to practicing more of this.

Do you think that the surgery you had has helped you or are you in the same condition as before the surgery?

Have you had any follow up with Dr Dye about your rehab? What did he say?

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #219 on: October 15, 2018, 06:47:05 PM »
I feel like I should give a brief update too. First, summary for those who can't remember my story:  January 6, 2108: after being pain free for several years drove myself back into PFPS (long story for some other time)..  Cried like a baby all evening.  Really.   Jan - March tried traditional PT of squats.  some days better than others, but big pain overall. April: stopped PT, cut step count to 6000. Seemed a little better. Key word is little.  May - Dr Dye visit.  Return home, step count down to 1500, (only could manage that for one day), then 2000 for several weeks. On gabapentin, advil, Cymbalta.  Decided I did have to go back to work in August, so increased step count 10% per week to 5000 by mid August.  Some water walking, always backwards and for only 7 minutes.  Worked on swimming with pull buoy for upper body work. Stationary bike but could not get past 7.5 min on lowest setting
Fast forward to now: doing about 6500 steps per day at work, 5500 on weekends. On 2/3 of original gabapentin dose and 1/2 of original advil dose. Generally not in pain although knees become aggravated after the biking (so why do I keep trying?), joined the pool at work (Student rec center), and am back to 6 min backwards walking, 6 steps to get in and out of pool, OR my "long walk" which is a whopping 11min (on flat ground).   I no longer spend all my time thinking about knees. I have a very long way to go to build strength, but at least I think I am on a path forward.       I am trying to focus on building upper body and core strength without aggravating my hands (which became painful in the summer after using them to assist my knee, and they are still a problem, including for house work.)

anyway, its slow.  But getting back to 6000 steps slowly seemed to be a good thing for me.

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #220 on: October 15, 2018, 09:47:06 PM »
Also, in the weird things category...my knees seem to like being at work!!  The building is dry and pressurized (to keep the fume hoods blowing outward not inward) and my knees like that.  On the other hand they hate the generally humid air outside where I live. I also set my desk up with a foam wedge on a cardboard box and that is pretty comfy.  Now, back in spring when I was in tons of pain the building made no difference. But now it does, a little.


Offline SuspectDevice

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #221 on: October 16, 2018, 05:57:14 AM »
I feel like I should give a brief update too. First, summary for those who can't remember my story:  January 6, 2108: after being pain free for several years drove myself back into PFPS (long story for some other time)..  Cried like a baby all evening.  Really.   Jan - March tried traditional PT of squats.  some days better than others, but big pain overall. April: stopped PT, cut step count to 6000. Seemed a little better. Key word is little.  May - Dr Dye visit.  Return home, step count down to 1500, (only could manage that for one day), then 2000 for several weeks. On gabapentin, advil, Cymbalta.  Decided I did have to go back to work in August, so increased step count 10% per week to 5000 by mid August.  Some water walking, always backwards and for only 7 minutes.  Worked on swimming with pull buoy for upper body work. Stationary bike but could not get past 7.5 min on lowest setting
Fast forward to now: doing about 6500 steps per day at work, 5500 on weekends. On 2/3 of original gabapentin dose and 1/2 of original advil dose. Generally not in pain although knees become aggravated after the biking (so why do I keep trying?), joined the pool at work (Student rec center), and am back to 6 min backwards walking, 6 steps to get in and out of pool, OR my "long walk" which is a whopping 11min (on flat ground).   I no longer spend all my time thinking about knees. I have a very long way to go to build strength, but at least I think I am on a path forward.       I am trying to focus on building upper body and core strength without aggravating my hands (which became painful in the summer after using them to assist my knee, and they are still a problem, including for house work.)

anyway, its slow.  But getting back to 6000 steps slowly seemed to be a good thing for me.

Yeah sounds like me.  I've gone backwards a bit after ramping up my cycling & running over the past 6mths in an attempt to do the local triathlon series (and these are very piddly races compared to what I used to do).  So 100% cured I ain't  :-\

Anyway the chondromalacia patella pain has flared, and also a little burning in there.  Time to back off!

I also read some great stuff on neuropathic pain, see here -  http://www.tmswiki.org/forum/painrecovery/ .  I'm pretty sure I have some of this going on too. 
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2018 - Started basic MTB racing, maybe try short triathlons in October?

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #222 on: November 27, 2018, 07:25:39 PM »
Short Update:  So I met by phone with Dr Dye about 3 weeks ago and he told me I really need to be progressing my pool walking or biking (I was at 7 min pool walking and about the same for biking) He wants me to pick one and focus and get to 20-30 min by January.  Wow, even Dr Dye wants me to do more!  So I have ramped up the pool walking to 14 minutes as of yesterday, and I can definitely feel it in my quads, which I guess is a good sign since my knees are tolerating it. It probably also indicates just how weak I am.  I got up to 8 min on biking (I was doing that one one weekend day) but it still feels iffy, so I am going to let that expensive, living room dominating bike sit and just do the pool work (I also do some swimming for my upper body without using my legs, and to warm me up since the pool is cold.  I need to invest in some neoprene.   I wish they werent closing the pool over Christmas.  I also have a lot of problems with my hands/wrists, but I guess for that I need to find a "handguru" site... :)

Anyone else doing pool work want to share?  Or just share?   I'm pulling for all of us.

Online BusterCatLegs

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #223 on: December 05, 2018, 11:48:29 PM »
Thanks for the update, helps to keep me motivated and avoid rotting away in my bedroom. I'm going to turn into a stump one day. My husband will come home and I will have calcified lying on my side and Vanderpump Rules will be playing away on my little laptop...

My knees are getting better, sort of. I'm doing physical therapy twice a week. I do some stretching, side straight leg lifts, leg press with 25 pounds, trx squats and clams. That's about it. I was doing the bike for 3 minutes at a time (booooommmm! that's right, 3 minutes) but I gave that up because it felt like it was irritating my knee.

The stiffness in my left knee has gone. The burning is gone. The general feeling that the entire joint is a disaster is gone. However, the fat pad area is f-ed. It is visibly swollen, especially by the end of the day. I still can't sit or sleep with my legs straight in front of me and sitting with my knees bent for more than about an hour is really aggravating. I finally went and got my hair colored and cut after 7 months and that was rather tortuous. I had very intense pain for about 2 hours and after that everything just went numb. No super bad after effects the next day though.

I had my physio tape my knee one time and that provided total pain relief. I was so excited by this miracle that I probably overdid it and the tape magic wore off. Still trying many different combinations of tape and probably just irritating everything in the process. I've gone through four rolls of K tape in about 2.5 weeks.

So I guess my knees are recovering but my fat pad still feels pinched or squished with nearly every step in my right knee. I am hoping that through strengthening and some form of taping I will be able to move forward. Starting to get very concerned that the fat pad pain will never go away, that I have fibrosis/permanent damage in that area.

And that's that!

Anybody had good success with taping?

Going to get in touch with Dr. Dye soon and see what he has to say.

I'm still at less than 1500 steps a day. Sitting in a tall chair in my kitchen has become much more manageable so I've been able to do some cooking which has been nice.

I was looking at my legs this evening and wow, my poor body. It's unbelievable. I think I'll start going to the pool but god, the thought of putting on a bathing suit. Not excited. That's life sometimes I guess!

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #224 on: December 07, 2018, 06:07:10 PM »
from Buster Cat Legs:   
"I was looking at my legs this evening and wow, my poor body. It's unbelievable. I think I'll start going to the pool but god, the thought of putting on a bathing suit. Not excited. That's life sometimes I guess!"
[/quote]


There is always neoprene!   I have to wear two (thin) neoprene shirts to not go hypothermic while I do my now 16 min of pool walking.  Luckily for me the pool is usually all mine. I just wish it were 10degrees warmer since I can't do my pull buoy swimming anymore as a warmup (upper body pain issues).
I would encourage all PFPS folks to try pool walking after you get the initial pain under control by massive activity modification (for me that was 3 months).  It really does seem to allow you a little leg exercise without aggravation.  I am where I can get through the day and my knees are generally quite tolerable (not normal, but tolerable).  I do about 6000-7000 steps, pool walking 3 days a week, about 12 steps (of necessity to get in and out of the house), and thats about it. sometimes I ice.
You also have to be willing to get to the pool and spend 5 min in the pool to start and much more time in the change room.  You start at where you are. It requires a big mental shift if you were athletic before. 
Anyway, my current conclusion is....Dr Dye's method really does work.    I spent lots of time doubting, depressed, all that stuff... but for those just starting on this horrible journey... there really is light at the end of what may be a long tunnel.  Have LOTS of patience,!

there, now I have probably just jinxed myself.