Advertisement - Hide this advert





Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 7453 times)

0 Members and 1 Guest are viewing this topic.

Offline SuspectDevice

  • Forum Faithful
  • ****
  • Posts: 203
  • Liked: 34
Re: chronic PFS- need advice, feel I've tried everything
« Reply #60 on: February 25, 2018, 09:34:43 PM »
I tried turmeric, with some other additive in it which is supposed to improve uptake/effect.  Can't really say I noticed any major positive effects.  I am going to get back onto high-quality gelatin for a while though, see if that can assist with my patella cartilage damage.
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% 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 Brandon123

  • Forum Faithful
  • ****
  • Posts: 335
  • Liked: 25
Re: chronic PFS- need advice, feel I've tried everything
« Reply #61 on: March 01, 2018, 08:50:51 AM »
I tried turmeric, with some other additive in it which is supposed to improve uptake/effect.  Can't really say I noticed any major positive effects.  I am going to get back onto high-quality gelatin for a while though, see if that can assist with my patella cartilage damage.

Have you noticed any positive effects of gelatin previously? I have never tried it, but maybe I should consider?
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline SuspectDevice

  • Forum Faithful
  • ****
  • Posts: 203
  • Liked: 34
Re: chronic PFS- need advice, feel I've tried everything
« Reply #62 on: March 01, 2018, 07:55:27 PM »

Have you noticed any positive effects of gelatin previously? I have never tried it, but maybe I should consider?

Debatable, but then when I was on gelatin previously, my knees were so bad it was hard to tell.  Now that they are more affected by chondro-type pain (more intermittent, sharp catching)  rather than PFPS-type pain (constant ache/burn/stiffness), I've been wondering if the gelatin might help with that.
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% 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 Brandon123

  • Forum Faithful
  • ****
  • Posts: 335
  • Liked: 25
Re: chronic PFS- need advice, feel I've tried everything
« Reply #63 on: March 02, 2018, 08:22:41 AM »

Have you noticed any positive effects of gelatin previously? I have never tried it, but maybe I should consider?

Debatable, but then when I was on gelatin previously, my knees were so bad it was hard to tell.  Now that they are more affected by chondro-type pain (more intermittent, sharp catching)  rather than PFPS-type pain (constant ache/burn/stiffness), I've been wondering if the gelatin might help with that.

Well, I would say it's probably worth a try!
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline reader278

  • Regular Poster
  • ***
  • Posts: 62
  • Liked: 5
Re: chronic PFS- need advice, feel I've tried everything
« Reply #64 on: March 09, 2018, 08:15:43 PM »
I wanted to give a brief update. I'm 3 weeks post-partial synvoectomy. I am still going between 1 to 2 crutches. However there are some improvements in my pain with respect to my ability to tolerate physio (I can do quad sets, hip abduction and clam shells without a big flare the next day). The progress is slow but I hope I'm coming along. I'm also taking high dose NSAIDs, curcumin, boswellia, Sam-e, ginger, and omega-3 to try to hit the inflammation hard. Plus regular icing and ROM. I don't endorse any of these meds/vitamins but I'm just trying to go all out to control my pain so I can get moving. I'm averging about 1500 steps daily.

Offline reader278

  • Regular Poster
  • ***
  • Posts: 62
  • Liked: 5
Re: chronic PFS- need advice, feel I've tried everything
« Reply #65 on: March 09, 2018, 08:18:19 PM »
Also one thing Dr. Dye said which I think is helping me is to have a rest day between physio sessions to make sure you're not flaring and to control the inflammation

Offline Brandon123

  • Forum Faithful
  • ****
  • Posts: 335
  • Liked: 25
Re: chronic PFS- need advice, feel I've tried everything
« Reply #66 on: March 10, 2018, 08:47:50 AM »
I wanted to give a brief update. I'm 3 weeks post-partial synvoectomy. I am still going between 1 to 2 crutches. However there are some improvements in my pain with respect to my ability to tolerate physio (I can do quad sets, hip abduction and clam shells without a big flare the next day). The progress is slow but I hope I'm coming along. I'm also taking high dose NSAIDs, curcumin, boswellia, Sam-e, ginger, and omega-3 to try to hit the inflammation hard. Plus regular icing and ROM. I don't endorse any of these meds/vitamins but I'm just trying to go all out to control my pain so I can get moving. I'm averging about 1500 steps daily.

I'm happy to hear that you finally see some kind of progress!
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline reader278

  • Regular Poster
  • ***
  • Posts: 62
  • Liked: 5
Re: chronic PFS- need advice, feel I've tried everything
« Reply #67 on: March 15, 2018, 11:32:16 PM »
Few updates. 1. there are apparently anti-gravity treadmills at some physio centres now. There's one in Toronto where I live that I'm planning to check out.  Second, Im not endorsing this cause never tried it, but there's a new 2018 study that came out on blood flow restriction training for people who have PFS and flair easily with exercises. Apparently it restricts venous flow and may make the muscles work harder without needing to do enough reps that flair the joint. I'm buying one to try using with like 1-2 physio reps every 3 days and will let you know. I guess there's a risk of causing damage if u restrict the leg too much though? Not sure....anyway that's my update

Offline SuspectDevice

  • Forum Faithful
  • ****
  • Posts: 203
  • Liked: 34
Re: chronic PFS- need advice, feel I've tried everything
« Reply #68 on: March 18, 2018, 09:30:56 PM »
Few updates. 1. there are apparently anti-gravity treadmills at some physio centres now. There's one in Toronto where I live that I'm planning to check out.  Second, Im not endorsing this cause never tried it, but there's a new 2018 study that came out on blood flow restriction training for people who have PFS and flair easily with exercises. Apparently it restricts venous flow and may make the muscles work harder without needing to do enough reps that flair the joint. I'm buying one to try using with like 1-2 physio reps every 3 days and will let you know. I guess there's a risk of causing damage if u restrict the leg too much though? Not sure....anyway that's my update

Yes, I had a physio on a triathlon website say they've had great success for knee pain patients with BFR training.  Have not tried it myself. What are you buying to restrict blood flow?  Will be very interested to see how it goes.
Along the same lines (i.e. work the muscles, but less reps) I wonder if this is why gym exercises like deadlifts, sissy squats, kettlebell swings seem to work for me much better than cycling/running - less reps (I do 3x10reps of each) compared to 30-60mins of run or cycle? 
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% 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 adamas

  • MINIgeek (20-50 posts)
  • **
  • Posts: 41
  • Liked: 0
Re: chronic PFS- need advice, feel I've tried everything
« Reply #69 on: March 21, 2018, 08:55:18 AM »
Just wanted to give an update, the PRP did not work for me and in fact made the pain much worse (similar to synvisc but even worse than that). My pain is now like at a 3-7 whereas before PRP it was a 0-5. This is about 1 month out from the 2 shots. My ortho surgeon Dr. Dye was mad at me for getting them done too. Anyways, because I am now barely able to walk, I'm getting a scope done by him on Tuesday. On top of that I have hip and ankle pain (I'm guessing from the knee because rheum and connnective tissue d/o were ruled out), plus elbow pain from a separate injury that makes it impossible for me to do even gentle physio. Am really hoping this is helpful!!!

Do you have any clue about the reasons why PRP made your pain worse?

I have a PRP shots series for both knees planned in a few weeks, and now I am wondering if doing it at all...
Did you do it on both knees together? Did you need crutches afterwards? My OS (BTW, part of the Italian research group that published a lot of papers on PRP and stem cells) did not mention that I need those, but simply can walk away on my own legs.


Offline Jasey122

  • MINIgeek (20-50 posts)
  • **
  • Posts: 47
  • Liked: 3
Re: chronic PFS- need advice, feel I've tried everything
« Reply #70 on: March 22, 2018, 01:20:29 AM »
Few updates. 1. there are apparently anti-gravity treadmills at some physio centres now. There's one in Toronto where I live that I'm planning to check out.  Second, Im not endorsing this cause never tried it, but there's a new 2018 study that came out on blood flow restriction training for people who have PFS and flair easily with exercises. Apparently it restricts venous flow and may make the muscles work harder without needing to do enough reps that flair the joint. I'm buying one to try using with like 1-2 physio reps every 3 days and will let you know. I guess there's a risk of causing damage if u restrict the leg too much though? Not sure....anyway that's my update

My physio work out mainly uses blood flow restriction training and I have seen good results so far.

Offline reader278

  • Regular Poster
  • ***
  • Posts: 62
  • Liked: 5
Re: chronic PFS- need advice, feel I've tried everything
« Reply #71 on: March 22, 2018, 10:42:42 PM »
For the PRP and Synvisc my specific diagnosis of synovitis/patellofemoral pain syndrome did not respond well...my OS said to me that PRP can make synovitis worse.  However other people have success with these shots so its hard to say. I think it works well for patellar tendonitis specifically whcih I do not have. As for the BFR- it is early days but I am only using it when I get up to walk for short distances like a minute and am noticing a nice thigh muscle burn  WITHOUT significant kneecap pain/irritation which is potentially a huge success for me because my patella region is so easily irritated by any kind of physio. Lots of recent research on BFR I encourage people to check  out the literature if they're interested.

Offline reader278

  • Regular Poster
  • ***
  • Posts: 62
  • Liked: 5
Re: chronic PFS- need advice, feel I've tried everything
« Reply #72 on: March 22, 2018, 10:46:06 PM »
I didn't use crutches after either of those shots by the way. In terms of what I'm using, there's lots of different brands off amazon, also you can use knee wraps apparently. However OFFICIALLY the ones used in the studies that I believe are FDA approved is this : Delfi’s state-of-the-art PTS Personalized Tourniquet System for Blood Flow. I bought a cheap thing off amazon but can't guarantee its safety.

Offline adamas

  • MINIgeek (20-50 posts)
  • **
  • Posts: 41
  • Liked: 0
Re: chronic PFS- need advice, feel I've tried everything
« Reply #73 on: March 23, 2018, 12:04:12 AM »
For the PRP and Synvisc my specific diagnosis of synovitis/patellofemoral pain syndrome did not respond well...my OS said to me that PRP can make synovitis worse.  However other people have success with these shots so its hard to say. I think it works well for patellar tendonitis specifically whcih I do not have. As for the BFR- it is early days but I am only using it when I get up to walk for short distances like a minute and am noticing a nice thigh muscle burn  WITHOUT significant kneecap pain/irritation which is potentially a huge success for me because my patella region is so easily irritated by any kind of physio. Lots of recent research on BFR I encourage people to check  out the literature if they're interested.

Would synovitis show up on a MRI? I have done MRIs to both knees and three different OS saw them, but no one mentioned to me synovitis.

Offline SuspectDevice

  • Forum Faithful
  • ****
  • Posts: 203
  • Liked: 34
Re: chronic PFS- need advice, feel I've tried everything
« Reply #74 on: March 23, 2018, 08:59:33 AM »

Would synovitis show up on a MRI? I have done MRIs to both knees and three different OS saw them, but no one mentioned to me synovitis.

I don't think so, it didn't on mine.  I even asked one expert could I have synovitis.  He prodded my knee a bit and said no, but I'm sure that was the main cause of my pain.  The OS world does not seem to have made the connection between PFPS and synovitis (except Dr Dye) - they are fixated on cartilage, patella mis-alignment and the VMO.  It reminds me of when the medical experts thought stomach ulcers were caused by stress.
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% 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?