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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 5720 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.

Offline 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?

Offline 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?

Offline 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