Advertisement - Hide this advert





Author Topic: PFPS.. Update...  (Read 450 times)

0 Members and 1 Guest are viewing this topic.

Offline spiderplant

  • Regular Poster
  • ***
  • Posts: 60
  • Liked: 5
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

  • Regular Poster
  • ***
  • Posts: 60
  • Liked: 5
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

  • Forum Faithful
  • ****
  • Posts: 229
  • Liked: 46
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!
2019 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline BusterCatLegs

  • Regular Poster
  • ***
  • Posts: 80
  • Liked: 5
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

  • Regular Poster
  • ***
  • Posts: 60
  • Liked: 5
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

  • Regular Poster
  • ***
  • Posts: 80
  • Liked: 5
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

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
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

  • Forum Faithful
  • ****
  • Posts: 229
  • Liked: 46
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!
2019 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons