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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 255 times)

Offline reader278

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chronic PFS- need advice, feel I've tried everything
« on: October 25, 2017, 01:02:41 PM »
Hey guys, I'm 29, have had PFS for about 16 months. I read Dr. Dye's stuff, was getting much better in the spring with pilates rehab and physio gunn IMS and soft tissue release. I was walking 7000 steps daily and doing 45 mins of exercises. Then I went on accutane for a month. Since then, I can only tolerate like 5 mins of physio and 4500 steps daily with mild to moderate pain. Stopped doing any quad strengthing. I got a Synvisc injection recently, not sure if it helped. Lately Im feeling pain above the kneecap, so wonder about quads tendonitis. So asking for advice- has anyone tried PRP, stem cell injections, long-term nsaids, total rest for a few months? I'm at a loss of where to go from here.

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #1 on: October 27, 2017, 09:00:50 AM »
Hi reader,

Sorry to hear about your struggle. Long-term knee issues are frustrating indeed. Have you seen these threads:

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=67816.0

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=67745.0

Lots of advice from, for example, @suspectdevice who overcame PFS after years of struggle.

Key seems to be to conquer chronic inflammation. How to go about it is the big question. Long-term nsaids + lowered activity level/knee load seem to work for some. I don't know if anybody has had any success with PRP and stem cells, but I think so, maybe they can chip in?

Offline SuspectDevice

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #2 on: October 30, 2017, 01:34:47 AM »
As Brandon says, took me 4.5+ years, but now 90% good. And 70% of that improvement happened in 5mths.

The key was knocking out inflammation via 5mths on Celebrex, avoiding activities which aggravated (e.g. cycling, kneeling, crouching), and finding some leg strengthening exercises that I could more or less get away with (deadlifts, starting at 35kgs 3x10, kettlebell swings starting at 16kgs 3x10, crab walks with thera band 15 steps x3 in both directions, and most strangely sissy squats 3x10 but only with body weight and with arms sliding against a vertical frame in the gym for balance).

I'm now cycling a fair bit now, doing a little running (calves giving me more probs than knees there now) and looking to ease my way back into short triathlons.

PRP did little for me (I had 3x injections in both knees).
Stem cells - too expensive for me to try @ $9000/knee, and they are really aimed at repairing cartilage damage which was not my major problem - chronic inflammation of synovial lining and other structures was my problem I believe, though no-one ever diagnosed that, despite me specifically asking the 'experts'.
Long-term NSAIDS was the key for me (Celebrex).
I'd not suggest total rest, but figure out what you can tolerate without making things worse.  This can be hard when your knees are constantly burning/aching/stiff like mine were.  The Celebrex improved things to a point where I could more easily figure out what my knees could tolerate and what they could not.  And then as I gradually built strength in the gym, they could tolerate more, but it takes months, not weeks.
L Medial menisectomy May 2012
PFPS in both knees ever since
Pre-CRPS diagnosed 2014
Also looking into Dr Scott Dye's Tissue Homeostasis & Envelope of Function work
2017 - 80+% cured thanks to Dr Dye's research
2017 - first small triathlon in 5yrs
2017 - back to 30% of training volume - that'll do!

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #3 on: November 01, 2017, 03:34:10 AM »
Was your PFS so bad that you were having moderate pain with walking?

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #4 on: November 07, 2017, 02:41:19 AM »
I'm going to walk very minimally and see how that goes. I have an electric wheelchair and will see how I do with it. Also  NSAIDs and icing. It's quite extreme but I need to do this.
« Last Edit: November 07, 2017, 02:45:47 AM by reader278 »

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #5 on: November 07, 2017, 08:49:15 AM »
I think PFS can be so bad that it is painful/difficult to walk. Some people are in pain more or less all the time. Probably a good idea to try your strategy for a few weeks and see if the pain subsides.
« Last Edit: November 07, 2017, 08:51:32 AM by Brandon123 »

Offline Nettan

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #6 on: November 09, 2017, 04:14:09 PM »
How come that you have an electric wheelchair?
I would be really careful with Starting using one if its only for PFS. You loose musclemass very fast.
I use a manual wheelchair 24/7 cause I have a spinal cord injury.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline SuspectDevice

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #7 on: November 14, 2017, 12:48:57 AM »
Was your PFS so bad that you were having moderate pain with walking?

Because my knees burned/ached/were stiff nearly all the time, walking made little difference.  In fact slow gentle wandering about often made them feel better. But hard/fast walking or jogging definitely made them worse.
L Medial menisectomy May 2012
PFPS in both knees ever since
Pre-CRPS diagnosed 2014
Also looking into Dr Scott Dye's Tissue Homeostasis & Envelope of Function work
2017 - 80+% cured thanks to Dr Dye's research
2017 - first small triathlon in 5yrs
2017 - back to 30% of training volume - that'll do!

 















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