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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 9656 times)

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Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #135 on: May 15, 2018, 01:51:38 PM »
I'm sure pros do experience strains and sprains. They also work with strength and conditioning coaches, physios, massage therapists, ice baths. Their muscles are kept in the right balance, do not over tighten, they work all of their muscles, they warm up,  they warm down, stretch under supervision, foam roll, ice etc

PFS (where not caused by an anatomical anomaly) is often the result of overuse of muscles, misuse and imbalance which can cause tendonitis and the patella to matrack, leads to inflammation, Chondromalacia

How would a TKR resolve synovitis? The procedure involves removing the arthritic ends of the long bones and replacing with a prosthesis from synthetic material whereas PFS affects the patellofemoral joint as opposed to the femur and tibia. Also the prostheses don't last indefinitely and revision is a much more difficult process.

Did you see Clare Robertson yet?
Have you seen a pain management specialist team who can help with both the physical and psychological side of chronic pain?

My comment about TKR was non-sense really...It's the psychological side effects of knee pain.

I saw Claire a few weeks ago and I have a follow-up next month. She was very informative and I started to have some progress with the exercises she gave me. However, recently I had a flare-up after I went hill walking for the first time again, since pain was reduced and I was feeling good, but clearly it was too soon. Besides, more recently I was at the airport and  had to run to the gate to catch a flight I was about to miss, and that short run aggravated even further the knees.

Now I feel I am back to square one and have lost all the progress made, and the psychological side is even worse...

About pain management clinics, is this something covered under the NHS in the UK? Have you ever been to one? What kind of treatments do they do for joint pain?

What did Claire diagnose as the cause and what prognosis

She thinks that the pain comes from parapatellar soft tissues, and it was caused by overuse (I was strenuously hiking in the mountains and running throughout last summer) in combination with tight leg muscles, which are lateralising my patellae, and poor limb control and walking form.

She then gave me exercises to stretch the lateral retinaculum and quads and balance exercises to improve proprioception and limb control.

I was making progress for the first 6 weeks after I saw her, then a few episodes (tried again a short hill walk since I was feeling good, had to run to catch a flight...) dragged me back at square one, with relentless burning pain all day long. It feels like I have chronic inflammation that cannot be calmed down.

Last time I forgot to ask her about the prognosis, if it is benign or if she sees cases where the condition never improves. I am seeing her in a couple of weeks, but I am now losing faith in everything.

Online Vickster

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #136 on: May 20, 2018, 09:05:07 AM »
Sounds like she has a good idea of what the issues are and how to treat. Itíll likely just take an immense amount of patience and lifestyle modification as with any chronic condition.

Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
LK New MRI shows lat & medial meniscus tear & other stuff
RK MRI lat meniscus tear
8/1/15 RK Steroid jab,
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #137 on: May 20, 2018, 03:55:47 PM »
Sounds like she has a good idea of what the issues are and how to treat. Itíll likely just take an immense amount of patience and lifestyle modification as with any chronic condition.

I am looking forward to seeing her soon. I had a recent setback that has been very bad not just on the pain and functionality, but on my mental health too, as I feel hopeless and doomed. Besides, I have started to have a new symptom which I have never had before, pain and soreness on the outside of the thigh just above the knee. I hope it is not ITB syndrome, I am fed up of being diagnosed with syndromes...

BTW, did you see Claire yourself? Was it for PFS?

Online Vickster

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #138 on: May 21, 2018, 09:35:09 AM »
I did yes, on the advice of my Physio. I have arthritis through the joint (based on X-ray and an MRI about 18 months ago), notably a large lateral defect (caused by an accident nearly 9 years ago) but some wear medially and the patella, plus worn meniscus. I donít have PFS, but do have an inflamed fat pad as a result of the arthritis. Not really much I can do except avoid a replacement for as long as possible.

She did suggest an offloader brace, but for a number of reasons Iíve not pursued.

I have an inflammatory condition (also have painful arthritis in my foot on that side) and take medication. I think with these chronic joint conditions you have to work out what you can do and enjoy, and not mourn the loss of what you canít do as before. If you need psychological support, talk to your GP about self referring to your local mental health service for talking therapy, CBT etc

Good luck
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
LK New MRI shows lat & medial meniscus tear & other stuff
RK MRI lat meniscus tear
8/1/15 RK Steroid jab,
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #139 on: May 21, 2018, 10:05:15 AM »

She then gave me exercises to stretch the lateral retinaculum and quads and balance exercises to improve proprioception and limb control.


Can I just ask what kind of exercises to stretch the lateral retinaculum she recommended?
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 adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #140 on: May 21, 2018, 01:01:48 PM »

She then gave me exercises to stretch the lateral retinaculum and quads and balance exercises to improve proprioception and limb control.


Can I just ask what kind of exercises to stretch the lateral retinaculum she recommended?

One crossing the legs and leaning toward a wall by pushing your hips laterally. The second lying on the floor, bending the leg and pushing it laterally to the opposite side and up towards the chest.

Apologies for the terrible descriptions, anyway these are standard stretches for ITB that you can google and see pictures.

Stretching feels good and as a slight relieving effect, but I am still doubting whether stretching alone can really solve an excessive lateralization of the kneecap.

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #141 on: May 21, 2018, 01:05:17 PM »
I did yes, on the advice of my Physio. I have arthritis through the joint (based on X-ray and an MRI about 18 months ago), notably a large lateral defect (caused by an accident nearly 9 years ago) but some wear medially and the patella, plus worn meniscus. I donít have PFS, but do have an inflamed fat pad as a result of the arthritis. Not really much I can do except avoid a replacement for as long as possible.

She did suggest an offloader brace, but for a number of reasons Iíve not pursued.

I have an inflammatory condition (also have painful arthritis in my foot on that side) and take medication. I think with these chronic joint conditions you have to work out what you can do and enjoy, and not mourn the loss of what you canít do as before. If you need psychological support, talk to your GP about self referring to your local mental health service for talking therapy, CBT etc

Good luck

By inflammatory condition do you mean Rheumatoid Arthritis? Or the defects are caused by Osteoarthritis?
I have an autoimmune disease myself (inflammatory bowel disease) and, even though it is not directly a MSK disease, I am sure it has an impact in the constant inflammation that I feel in the knee joints.

Do you have pain just when doing sports or even in activities of daily life?

Online Vickster

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #142 on: May 21, 2018, 01:20:01 PM »
It's not been diagnosed as RA but I'm taking a medication used to treat it I think it's more a reactive inflammatory OA. The big defect in my knee was caused by a nasty twisting fall from a bike which also tore my lateral meniscus

I pretty much have pain and stiffness in multiple joints all the time, not severe acute pain but u comfortable. It's worse if I don't exercise or move regularly. I probably have least pain when I cycle but I stiffen up very quickly when I stop. My muscles feel very tight. Doing hydrotherapy now, feels great doing it, but I'm very stiff the day after. Not really sure what more or else I can do.

What medication do you take for your IBD (Crohns or UC?), some are the same as for RA (DMARDs and biologics for example)
« Last Edit: May 21, 2018, 01:41:55 PM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
LK New MRI shows lat & medial meniscus tear & other stuff
RK MRI lat meniscus tear
8/1/15 RK Steroid jab,
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #143 on: May 21, 2018, 02:34:14 PM »

She then gave me exercises to stretch the lateral retinaculum and quads and balance exercises to improve proprioception and limb control.


Can I just ask what kind of exercises to stretch the lateral retinaculum she recommended?

One crossing the legs and leaning toward a wall by pushing your hips laterally. The second lying on the floor, bending the leg and pushing it laterally to the opposite side and up towards the chest.

Apologies for the terrible descriptions, anyway these are standard stretches for ITB that you can google and see pictures.

Stretching feels good and as a slight relieving effect, but I am still doubting whether stretching alone can really solve an excessive lateralization of the kneecap.

Thanks for the info!
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 adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #144 on: May 21, 2018, 02:37:42 PM »
It's not been diagnosed as RA but I'm taking a medication used to treat it I think it's more a reactive inflammatory OA. The big defect in my knee was caused by a nasty twisting fall from a bike which also tore my lateral meniscus

I pretty much have pain and stiffness in multiple joints all the time, not severe acute pain but u comfortable. It's worse if I don't exercise or move regularly. I probably have least pain when I cycle but I stiffen up very quickly when I stop. My muscles feel very tight. Doing hydrotherapy now, feels great doing it, but I'm very stiff the day after. Not really sure what more or else I can do.

What medication do you take for your IBD (Crohns or UC?), some are the same as for RA (DMARDs and biologics for example)

Pain in multiple joints sounds like a systemic inflammatory condition, many autoimmune diseases (for instance even coeliac disease) cause that as a side effect, not necessarily just RA. Do you get often swelling and hot joints?

I have ulcerative colitis. Many people with UC and Chron's get joint pain as a side effects of the main disease, but there's no test to tell whether the joint pain is due to that, and maybe could benefit from certain medications, if it is a total separate problem, or a combination of both.

I am taking mesalazine for UC, which is the first-line drug usually prescribed with the least side effects and acts as a local intestinal anti-inflammatory agent. Going up the medication ladder there's methotrexate, are you taking this for your condition? Then the various biologics.

At the end of the day the cause is always the immune system going haywire, and this can creates a state of subclinical chronic inflammation in various parts of the body

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #145 on: May 26, 2018, 03:52:26 PM »
Hi all,
I've been away a few weeks and have an essay to catch you all up. Hopefully it can be of some help to someone.

So, in the 5 days leading up to my going to SF to see Dr Dye, I was experiencing an improvement... longer pain free windows in the morning and evening. I was basically following the Bedard method... doing close to 7000 steps a day, spread out, with my long walk being 12min, and avoiding everything I can that aggravates the PF joint. I am off work for the summer which allows me to be much more consistent than previously when I was at work. Mostly I sit and read with knees supported out front. I was very afraid of traveling, especially for so long, so was seriously considering bailing on the trip.   But I didnt.
Turns out I survived the travel with no flares. I took a wheelchair in my large hometown airport, which was a long process.  I tipped and dismissed my wheelchair person at a food place near my gate.  Then got food and went to the gate, where I found out the gate had been changed to clear the other end of the terminal.  I was fed up with the wheelchair thing so I walked, slowly, pulling my wheeled carry on , and it was fine. Propped my feet up in the plane, not comfy exactly but it worked. Wheelchair in SF which turns out was probably unnecessary since gate was near the exit and not to far to go to ground transport.

anyhow, next day... Dr Dye. Did imaging all morning. Walked around hospital a fair bit. Was glad I had kept my step count up so I could manage this (although I am sure they could provide a wheelchair if asked).  Dr Dye met with me for over an hour, went through my history and imaging thoroughly. Knees were not hot (which I knew), my bone scans were clean (which surprised me), and my x-rays were clean... not on the path to osteoarthritis.   MRIs showed neovascularization of the fat pads, which is not seen in normal knees and is somehow related to the synovium being overgrown, and patches of white which were at places I feel pain, and is too much synovial fluid. (hope I got this right). So basically, synovitis. I also have minor thinning of patellar cartilage but he was not concerned about this.
He didnt put my step count down (which I was afraid of although I didnt tell him that).  Put me on gabapentin because he suspects a  nerve component.  Asked me to get or access an exercise bike as this will be my path forward.   Talked about a lot of things you know if you've watched his talk (radical incrementalism). also got a kenalog shot in each knee.  Did not rule out surgery, which I am very motivated to avoid. (this is all out of pocket for me).

So I survived the travel home, and my parents were here from Canada for over a week, to help me with yard work and other things. They bought me an exercise bike. (YAY!).  But you can guess where this is going.. I almost immediately blew the radical incrementalism part... although I wasnt actually doing any work I walked around my yard much more than I had been (not exactly flat, and uneven), and I think the death knell was pulling one of those flatbed carts at home depot over a short section of parking lot.. heavy, and lots of friction with the asphalt. I took baby steps.. but had a painful flare that night (Tuesday) which I am still recovering from (it has improved some). Also the weather changed from hot and dry, which my knees like, to hot and humid, which they dont.  So I have this great bike I am afraid to use.  Its so hard to maintain radical incrementalism around other people, even if they know your situation and are supportive.   The good thing is for the rest of the summer I can be a hermit, more or less.

Random other things.. exercises I found I can still do... planks with a foam roller just above the knee... I hold for longer than a real plank but it removes the knees from the equation. Side planks, keeping knees soft.  And I think I can do bridges with my whole lower leg on the ottoman up to underneath the knee. I think this might aggravate a little but not much.  And couch cushion squeezes.. put them between my legs and squeeze in for 30s. trying to keep a little core strength.

Thats all for now.

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #146 on: May 26, 2018, 03:55:04 PM »
Hey guys, I wanted to provide a new idea my fiancee and I just thought of.  There are ZeroG harnesses for rehab that go above a treadmill. My fiancee is an engineer and says he could set it up in our place! They also exist at rehab centers, but I'm walking so little it's not worth it driving all the way to a rehab place....this could potentially be very helpful in restoring mobility......thoughts?

I had a facebook post (sponsored) of a pedalless bike... basically a frame hangs above you connected to wheels front and back and you are suspended from the frame.  They advertise as allowing running without joint impact.. but I think it would work for walking as well. May be worth checking out.

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #147 on: May 26, 2018, 11:18:21 PM »
Hi all,
I've been away a few weeks and have an essay to catch you all up. Hopefully it can be of some help to someone.

So, in the 5 days leading up to my going to SF to see Dr Dye, I was experiencing an improvement... longer pain free windows in the morning and evening. I was basically following the Bedard method... doing close to 7000 steps a day, spread out, with my long walk being 12min, and avoiding everything I can that aggravates the PF joint. I am off work for the summer which allows me to be much more consistent than previously when I was at work. Mostly I sit and read with knees supported out front. I was very afraid of traveling, especially for so long, so was seriously considering bailing on the trip.   But I didnt.
Turns out I survived the travel with no flares. I took a wheelchair in my large hometown airport, which was a long process.  I tipped and dismissed my wheelchair person at a food place near my gate.  Then got food and went to the gate, where I found out the gate had been changed to clear the other end of the terminal.  I was fed up with the wheelchair thing so I walked, slowly, pulling my wheeled carry on , and it was fine. Propped my feet up in the plane, not comfy exactly but it worked. Wheelchair in SF which turns out was probably unnecessary since gate was near the exit and not to far to go to ground transport.

anyhow, next day... Dr Dye. Did imaging all morning. Walked around hospital a fair bit. Was glad I had kept my step count up so I could manage this (although I am sure they could provide a wheelchair if asked).  Dr Dye met with me for over an hour, went through my history and imaging thoroughly. Knees were not hot (which I knew), my bone scans were clean (which surprised me), and my x-rays were clean... not on the path to osteoarthritis.   MRIs showed neovascularization of the fat pads, which is not seen in normal knees and is somehow related to the synovium being overgrown, and patches of white which were at places I feel pain, and is too much synovial fluid. (hope I got this right). So basically, synovitis. I also have minor thinning of patellar cartilage but he was not concerned about this.
He didnt put my step count down (which I was afraid of although I didnt tell him that).  Put me on gabapentin because he suspects a  nerve component.  Asked me to get or access an exercise bike as this will be my path forward.   Talked about a lot of things you know if you've watched his talk (radical incrementalism). also got a kenalog shot in each knee.  Did not rule out surgery, which I am very motivated to avoid. (this is all out of pocket for me).

So I survived the travel home, and my parents were here from Canada for over a week, to help me with yard work and other things. They bought me an exercise bike. (YAY!).  But you can guess where this is going.. I almost immediately blew the radical incrementalism part... although I wasnt actually doing any work I walked around my yard much more than I had been (not exactly flat, and uneven), and I think the death knell was pulling one of those flatbed carts at home depot over a short section of parking lot.. heavy, and lots of friction with the asphalt. I took baby steps.. but had a painful flare that night (Tuesday) which I am still recovering from (it has improved some). Also the weather changed from hot and dry, which my knees like, to hot and humid, which they dont.  So I have this great bike I am afraid to use.  Its so hard to maintain radical incrementalism around other people, even if they know your situation and are supportive.   The good thing is for the rest of the summer I can be a hermit, more or less.

Random other things.. exercises I found I can still do... planks with a foam roller just above the knee... I hold for longer than a real plank but it removes the knees from the equation. Side planks, keeping knees soft.  And I think I can do bridges with my whole lower leg on the ottoman up to underneath the knee. I think this might aggravate a little but not much.  And couch cushion squeezes.. put them between my legs and squeeze in for 30s. trying to keep a little core strength.

Thats all for now.

Thanks for the report.

Besides diagnosing synovitis, did Dr. Dye formulate a treatment plan for you? What did he tell you about the prognosis and his track of record with patients?

Did the kenalog shots help you or has the effect already worn off?

Offline Geronimo

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #148 on: May 27, 2018, 08:33:58 AM »
your story reminds me of myself, especially the part where you  were afraid to travel.  ;D i had a major journey for 2 weeks and was also hesitant to flare up, stacked on meds, braces and so on. ended up feeling way better than before the trip.  :)

careful with the bike though, i had one and had to sell it eventually because it never made my knees better. start easy without resistance, try 3-5 minutes first and build up gradually.

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #149 on: May 28, 2018, 03:19:01 PM »
your story reminds me of myself, especially the part where you  were afraid to travel.  ;D i had a major journey for 2 weeks and was also hesitant to flare up, stacked on meds, braces and so on. ended up feeling way better than before the trip.  :)

careful with the bike though, i had one and had to sell it eventually because it never made my knees better. start easy without resistance, try 3-5 minutes first and build up gradually.
I did two minutes at the lowest level yesterday and it was fine. Dr Dye said start at 5 min and I am being even more conservative than him!
I think it depends on how the injury first started...eg Richard Bedard injured his knees biking so it would have been a bad idea for him. Mine was ice skating which is a more lateral movement so I am hoping a bike will help me.















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