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Offline spiderplant

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PFPS.. Update...
« on: May 16, 2019, 06:37:24 PM »
Howdy everyone,
Its been a while since I posted which I guess is good.  My whole story is in some other threads but basically Jan of 2018 got bad PFPS, saw Dr Dye in May, cut way back on knee use, gradually worked back up.  Today I am at 30 min of pool walking on top of about 7000 steps a day. Which isnt much but is WAY better than 2000 steps a day and house bound.  I was busy at work all spring, but had to always use the elevator (let me tell you it sucked when that broke a couple of times... trapped on an upper floor!) .  No hills and few stairs.   Dr Dye wants me to start working on the exercise bike now.  to build better quads, since pool walking doesnt really give a full ROM I think.  I am only on one med (Cymbalta, which helps both pain and depression... I mostly have neither anymore), havent iced in months. I still really like an evening sit in a hot bath, it can help with discomfort, and I think a lot of my discomfort anymore is related to trigger points which I am constantly having treated. ( I seem to have multiple issues).  Also my right knee is still sensitive to humidity which given that I live in the humid south is unfortunate. Anyway I feel like I am living life again even if I still have a lot of things I have to avoid, its not nearly as bad as it was.  So I guess my overall message, although a sample size of one, is that Dr Dye's method does seem to work.  It takes what feels like forever though.  Getting through the mental part is very difficult.   I needed the help of gabapentin and advil, (and cymbalta) and was able to wean off the gabapentin slowly with no ill effects. (Advil you can just stop taking). 

Offline spiderplant

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Re: PFPS.. Update...
« Reply #1 on: May 31, 2019, 04:32:26 PM »
So I was hoping some of you guys would add your own updates....I know you are still out there!

On the bad side, the transition to the exercise bike has not gone well, I did 6 min twice at level 3 out of 25, which seemed mostly OK, but 7 minutes caused a mini flare.   So not as far along as I had hoped.  Dr Dye told me to start at 5 min, then go to 10, 15 etc but it seems I have to out-radical-incrementalize him!  sigh.

Offline SuspectDevice

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Re: PFPS.. Update...
« Reply #2 on: June 13, 2019, 07:06:27 AM »
My PFPS and Patella Chondromalacia symptoms are the best they've been in 7yrs.  I'm back to some pretty hard cycling (3x/week for up to 2hrs), and gym leg work.  I'm trying to very very slowly re-introduce a little running (e.g. 10mins of 1min walk/1min easy run on treadmill).

But the spot where I had my medial meniscus trim 7yrs ago is twitchier than ever.  Not sure if it is the attempt to return to running, a few events on rough ground while out fishing (one jump from rock to rock in particular rings a bell), or just the fact that I've generally increased my exercise levels?  Strangely, it seems worst at rest or first thing in the morning, not when running or riding or gyming?

One other tip - I take a teaspoon of beef-based cooking gelatin in my drink every morning.  It's supposed to be good for cartilage/tendons etc.  Not sure if that has been a contributor to my improvement, but it is cheap and harmless so why not.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline BusterCatLegs

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Re: PFPS.. Update...
« Reply #3 on: June 17, 2019, 02:23:14 AM »
 Hi!! So nice to see your post. I have mostly been avoiding this forum because it brings me back to a dark place but I know I need to share the wisdom I've gained. Which isn't a ton but may help others out there!

I was a total mess for a long time and now definitely less of a mess but still not so great. A solid 5/10?

I'm now walking a total of about 3000-4000 steps a day. Doing some stairs...a lot less pain on a day to day basis but the right knee is still annoying. It seems the fat pad is still swollen. Not sure if that's where all of this pain originated...

Anyway, I had a severe pinching pain in both knees when walking and that resolved in my left knee about 4 months ago and is mostly gone in my right as of about 1.5 months ago. It took almost a year for my right knee!! Insane.

I use KT tape to tape the fat pad region in in a V shape every single time I walk. It's a giant pain in the ass. I still ice both knees. I still take 400 mg of naproxen but I know I have to stop bc it isn't great for you...and I do massage twice a week. That has been a huge game changer for me. Been having a guy work on my legs only and it has completely changed everything in terms of range of motion and feeling more normal in my body. I highly suggest it!!

I started doing pilates, just quit physical therapy bc I ran out of insurance and I can do most of that in my home gym.

I'll write more details soon...thanks spiderplant  and suspect for the update. I needed that! More details this week, promise. Thanks to all of you who were such a great support during the worst days of my life (so far, ha).


Offline spiderplant

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Re: PFPS.. Update...
« Reply #4 on: June 17, 2019, 05:50:16 PM »
Well, my previous post was the happy update, now for the unhappy one.   Its a lesson on the dangers inherent in believing things are better than they really are , and the challenge of separating proximate and ultimate causes.  The dangers of switching from one type of exercise to another. The risks of trying to move forward.  Even though one must if one wants to be "normal" again.

So, the bike was really not working out for me (7min at level 3 of 25 caused a mini-flare) so I determined to try land walking.  I may have gone overboard, but based on the daily walking I had been doing (including a 10 min walk for coffee, plus later a 5 min walk to the pool, the pool walking, and a 5 min walk back, plus standing for 1 hour 15 lecturing) I did a 20 min walk with a gentle gradient. As far as I could tell that was okay-ish for my knees but my quads had a bunch of odd feelings (which didnt disturb me).  So after discussion with the PT who does my dry needling I did a 20 min walk on flat ground 6 days later (there were some shorter bike sessions between).   Now, I should add I had about 100 super itchy chigger bites that day and it was humid, so nothing about it  was great, but it really seemed to flare my  knees up.   So, lesson to me was go back to the pool for a while, then start with less walking.  I did 30 min pool 2 days later (which is what I had been up to for a while), seemed to not feel great after.   Saturday I did 20 min pool, sat in the hot tub which was finally open, drove home and MASSIVE Flare.... got the ice out, and proceeded to have a long crying fit. not this again!!!!!!!!!!!!!    So now I am back in that fearful place of not knowing what they can tolerate, back on Advil, icing.   The only good part is yesterday (Sunday) they do seem to have calmed down a fair bit.  But still....fear.  lack of being able to tell what I can do.  I HATE this place.

I did talk to Dr Dye some but the upshot is that I have to find my E of F again.   I talked to him before the 20min pool debacle.    Basically its all up to me.

Offline BusterCatLegs

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Re: PFPS.. Update...
« Reply #5 on: June 25, 2019, 02:01:59 PM »
Yeah, I am pretty sure this is going to be a lifelong condition. Or a recovery of many years. I mostly try to ignore that thought.... I guess I'm still happy to be able to go get coffee and have my nails done.

Returning to normal life is probably out of the question, will probably never be able to travel again the way I want to, etc. Oh well. I'm off....will check in in a  while. This place is just too depressing for me these days!! I wish you all the best of luck!!

Offline Bluebird87

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Re: PFPS.. Update...
« Reply #6 on: July 08, 2019, 11:10:09 PM »
Hi all. Thank you for coming back to post your updates! I'm sorry to hear you guys aren't 100% healed, but at least it sounds like things are generally trending upward.

Unfortunately, I'm not doing much better myself. I'm averaging about 4,000 steps/day now with moderate pain. Still walk very slowly, can't do stairs, can't drive, haven't been able to commute into work (via public transportation in a big city). I wake up most nights for an hour or two with a terrible ache in the knees and ankles.

I've been to several more specialists that haven't been helpful. Even the pain management doctor thought it sounds structural and sent me back to an orthopedist. Got my 3rd knee MRI, which again showed "mild chondromalacia" but also showed an "unchanged deep fissure" in the cartilage, which hadn't been mentioned before. When I asked the orthopedist if the fissure could be causing my severe pain, he just said "my knees probably look worse than that." ...

I'm at a loss and feel very hopeless about my future. I'm only 31 but my life feels like its over and no one cares. And I'm so tired of being in constant pain for the last 11 months. (Sorry for the rant).

Spiderplant - I'm so sorry to hear about your flare-up and hope it has calmed back down! I know exactly what you mean - you need to keep pushing the boundaries a bit or else you'll never know if you can do it, but the potential flare-ups are terrifying, especially when the effects could last weeks.

Thank you again spiderplant, bustercatlegs, and suspectdevice for posting your updates and what's been working.

Offline SuspectDevice

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Re: PFPS.. Update...
« Reply #7 on: July 09, 2019, 06:08:04 AM »

I'm at a loss and feel very hopeless about my future. I'm only 31 but my life feels like its over and no one cares. And I'm so tired of being in constant pain for the last 11 months. (Sorry for the rant).


Have you tried a long-term course of anti-inflammatories (combined with not overdoing things exercise wise of course)?  That was the only thing that knocked my inflammation out (Celebrex for 6mths).

BTW I too had bad chondro with deep fissures & though these caused some pain, they did not cause the chronic constant burning/aching of PFPS - which I define as inflammed synovial lining, though it may have been the chondro plus heavy exercise which led to the synovial inflammation.  I still get the chondro pain (though much less), but the synovial pain is largely gone.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline SuspectDevice

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Re: PFPS.. Update...
« Reply #8 on: December 18, 2019, 08:50:13 PM »
A quick update.  I'd have to say my knees are the best they've been in 7.5 years.  I'm not running, but doing regular gym including some leg work, pretty gnarly single-track mountain bike rides of 45-90mins and swimming.

I can still feel the PFPS lurking there at times - a background stiffness and slight burn/tingle, but it is at a very low level.

One more thing I discovered is sitting on a table and doing gentle knee swings seems to help, and I try to do at least 5mins of this before each MTB ride, and 5 mins after.

Getting rid of extreme PFPS (which I think is the classic Dr Dye synovitis/loss of tissue homeostasis) can be an extremely long-term venture (7.5yrs & counting in my case).  Sometimes, it feels like you will never win, but it can improve dramatically.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline Aly0108

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Re: PFPS.. Update...
« Reply #9 on: April 02, 2020, 12:05:16 AM »
Maybe It will help you. Five years ago I had a terrible inflammation in my knees after squats. I visited a lot of PT, after them my knees were very worst, my fat pas was very swollen, I can not walk, stand for a minute. I was cried every day. I lost my hope. I came on this forum. I read a lot about knees. After 3 of issues , I stopped all exercises, all stretch. I started to walk. Walk for 1 minute/5 minute rest. I started slowly but for 2 years it was very well for my knees. Last year I decided to open my restaurant business, and I was able to move with no pain. I started to listen my knees. Last week I decided to do triggers points massages for my hips, sartorius, hamstrings muscles  and my knees reacted very bad , now they are worse. My pain is laterally of my patella. I tried to understand theses triggers points, maybe they are formed my body to help balancing our muscles?
Thanks


Offline BusterCatLegs

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Re: PFPS.. Update...
« Reply #10 on: June 11, 2020, 03:07:02 PM »
Hey everyone,

Thought I'd post another update. My world was basically destroyed two years ago..you can read all about that on this forum. Wanted to provide an update of things that are working for me.

It's been a bit over two years since my first knee issues. Currently I can see that the fat pad on my right knee juts out a bit around the patella. It is harder to see on the left knee but it does not look totally normal. Normally I think it would sort of indent when you stand.

The fat pad swelling is definitely going down. I have been religiously taping my knees in a V shape for over a year now with kinesiology tape. I use a super moisturizing lotion from lush so the tape does not pull the skin off my legs when I remove it daily. It used to hurt just to keep the tape on all day so I'd have to take breaks and redo it. Now it does not!

I have also started wearing knee high socks. I think the proprioceptive feedback is helping the back chain of my muscles fire better. I lost a lot of muscle and strength because I didn't move for ages. I am now fully addicted to the knee socks. They also provide some support around the knee area and seem to keep the fat pad area sort of sucked in. For me they are a daily must. I found good ones at smartwool and spanx has a cute pair of knee socks that work really well. They are white with orange lines at the top.

I lost a bunch of weight. That helped a lot. I am currently 127 at 5 feet 5 inches and I have read in some journal articles that the fat pad does change size as you gain and lose weight. Losing weight is your friend and in my opinion should be a huge priority. I was able to do it with basically zero exercise through calorie counting. I had nothing much going on anyway so why not... it also helps the body be less inflammatory which is really important.

I do lots of pilates. I started seeing a pilates instructor one on one. She is incredible and that has helped a ton. I also see a PT person who is pilates trained. I think her extremely gentle approach has helped me a lot. I never push too much and that has served me well.

I started doing stairs about 2 and a half months ago and can comfortably do two flights on a regular basis. At first my knees and legs felt crazy but things are much better now. I have realized that as I gain muscle my legs feel super weird and uncomfortable and I need to do massage or bath to help them feel better.

I am walking maybe a mile to a mile and half a day...something like that. I stopped counting steps. I am thinking I will be able to do more as I gain more strength. It took my right knee absolutely forever to stop hurting....for about 2 years it would hurt by the end of the day but that seems to be mostly gone now.

I rode a bike around the block the other day and that went ok. I do not plan to push things...the setbacks are just too depressing and I'm happy with a slow and gentle recovery. But now if I do have a setback I realize it is only going to be for a day or two where I feel discomfort.

What else???

Standing is still a challenge but now I can wander into the local grocery store without fear as long as there isn't a big line... that is new for me as of the last month. Lots and lots of new things lately that have given me so much freedom back.

That's about it for now. For me patience has been key, not overdoing it, and weight loss. I have no idea if I'll ever be the same but this is a huge improvement on even 3 or 4 months ago! Hope you're all well and recovering. Would love to hear from some of you again!!


Offline BusterCatLegs

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Re: PFPS.. Update...
« Reply #11 on: June 11, 2020, 03:16:02 PM »
One more thing...I still seem to not be able to lie down with my legs out straight in front of me. Feels pinchy. I can finally as of about 4 months ago sleep with my legs straight when on my side or kind of on my stomach but when I am on my back it doesn't feel right...still!!! Over 2 years like this!

Offline kawi_girl

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Re: PFPS.. Update...
« Reply #12 on: June 11, 2020, 04:33:45 PM »
 BusterCatLegs,

Thank you for posting the update regarding your progress. I find it is very helpful to me to read about how others are doing, especially when they have some good news to report! As you know, ongoing knee problems can lead one to some rather dark places at times. So inspiration is so helpful.

Yes, I have read a lot about how weight loss can help a lot, good for you to accomplish that! The only Ďdiscouragingí thing for me is that I am already light for my height so losing weight was never an option.

Was it great to be on your bike? I am up to 2-4km and Iím always so excited to go out on the bike, even if itís short (also I go to the park and sit on a bench for a while, so not much riding!)
I am still not sure if itís the best thing for my knees yet it really boosts my mental health so thereís that.

I wish you well with your progress, it can be a slow road yet you seem to be moving forward :) Keep posting updates, you are helping many of us to keep on as well.

Offline BusterCatLegs

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Re: PFPS.. Update...
« Reply #13 on: September 08, 2020, 03:14:39 PM »
Just another quick update... I am now riding a bike a couple times a week. Usually 10 minutes at a time to get to my PT or pilates appointment and back home. This is MAJOR!! My muscles are improving very quickly compared to before because of the bike riding. My right leg is finally starting to catch up to my left leg and no longer resembles a twig.

I even bought a bike! I usually use the citibike kiosks but nope. I'm getting my own bike because I'm a big girl now. I gave my bike away last summer because I had zero hope that I would ever ride one again. It has been a really good year for me even though it has been trash in most other ways.

It has been about 30 months or so but I'm happy to finally be here!

Also I can do multiple flights of stairs now! And not be scared! It's bananas!

I am still addicted fully to KT tape and my compression socks that I buy from spanx. I can still feel faint pinching on my right knee without them so I wear them both religiously. I barely walk without. Can't have everything. It is a small price to pay for movement I guess.

I did an interview thing as well with my pilates instructor if you're at all interested. You can find it by going to my IG account which is @chowchowbysandra or to @intuitivemotionpilates...I'm there somewhere! Just more of the same old blah blah blah about my knee injury that you've all heard a million times on this forum. Hahaha..

Thanks for reading and I'm wishing all of you well. I guess the body has an amazing capacity to heal itself. It is just really really slow sometimes.

Offline kawi_girl

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Re: PFPS.. Update...
« Reply #14 on: September 08, 2020, 05:17:03 PM »
This is great to hear. Iím curious to know if you are still using ice, and if so, when?

I have been using a pair of hiking poles to go for a trail walk on most days, itís just a kilometer loop yet itís something. I ice after each session and so far that seems to be going ok without a major flare up. I have been wondering if icing if beneficial in healing or just a crutch in order to gain more movement.

Thoughts?















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