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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 8667 times)

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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?
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

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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 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 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 »
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 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 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 reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #8 on: November 20, 2017, 06:53:35 PM »
The reason why I got the electric wheelchair is because I had a phone consult with Dr. Dye who suggested I keep my walking to 2000 steps or less. So I am still walking just less so. Hasn't much helped as it's hard to get my knees to really rest even with an elevated leg rest on the wheelchair because of the slight bend in my knees still. I am going to California to have an in person consult with him which may include a cortisone shot and/or a synovectomy. He did not recommend prp. Anyone here had success with either of these approaches? I can confirm synvisc did not help me and only made my pain slightly worse.

Offline Jasey122

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #9 on: November 20, 2017, 07:30:17 PM »
Ive had really bad pfps pain for the last few years really badly. Walking and standing is very painful for me too. I can walk for about 10 mins and stand for  less than 5. Have you done an MRI scan, which country are you?

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #10 on: November 20, 2017, 11:14:34 PM »
Yes I have had an MRI which was grossly normal, however Dr. Dye reported showed neovascularization, which is basically inflammation. His diagnosis was peripatellar synovial impingement/synovitis, to be more accurate (it's still patellofemoral syndrome).

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #11 on: November 21, 2017, 09:40:38 AM »
The reason why I got the electric wheelchair is because I had a phone consult with Dr. Dye who suggested I keep my walking to 2000 steps or less. So I am still walking just less so. Hasn't much helped as it's hard to get my knees to really rest even with an elevated leg rest on the wheelchair because of the slight bend in my knees still. I am going to California to have an in person consult with him which may include a cortisone shot and/or a synovectomy. He did not recommend prp. Anyone here had success with either of these approaches? I can confirm synvisc did not help me and only made my pain slightly worse.

Interesting that Dr. Dye recommended against PRP, did he mention any particular reason?

I haven't tried cortisone shots or synovectomy, but I had the same experience with viscosupplementation...it only made my knee/the inflammation slightly worse. 
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 Jasey122

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #12 on: November 21, 2017, 09:44:47 AM »
I have also been in touch with Dr Dye and due to fly out to San Francisco. He mentions conservative treatment, failing with we can look into the possibility of a synovectomy as it is his belief my problems are caused by inflammation of the fat pads which is identical to yours. In that instance,  it'll be interesting to know how you get on.  Also, on reccomendation of another forum member I went to see claire robertson - www.clairepatella.com -   and she was extremely informative about the patella. She told me my knee caps were riding high and because they were moving about due to the week muscles, this is why it is catching onto the fat pad and causing impingement.  In her opinion strengthening the muscles should be the main focus and she gave me some exercises. She also carefully showed me how to ice my fat pads which Ill have a go at. Definitely worth seeing her if you're in the UK. Did you get a bone scan by the way, did it show anything?
« Last Edit: November 21, 2017, 10:18:25 AM by Jasey122 »

Offline Nettan

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #13 on: November 21, 2017, 10:13:54 AM »
I do understand the problem you face and using electric wheelchair but at same Time What can you do/do you do to keep your muscles in shape? The problem often with Patella and ongoing inflammations is that when muscles waste away the problems get worse.
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 reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #14 on: November 21, 2017, 03:29:51 PM »
I am seeing him on Monday and will likely get a kenalog shot, and potentially a synovectomy worst comes to worst. After that I will increase my step count slowly and add in some gentle leg exercises. I am currently doing core/glute strengthening. He did not tell me to get a bone scan...at least not yet. Maybe cause the mri was enough to show him inflammation? He said prp was not his favourite for this type of condition in particular....not sure why.