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Author Topic: Update (Over a year and frustrated)-this is slow going:(  (Read 210 times)

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Offline kawi_girl

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Update (Over a year and frustrated)-this is slow going:(
« on: May 24, 2020, 03:40:50 PM »
 Well it has been almost 3 months since I quit working in order to get a handle on my recovery and I have to say that only a very little has changed so far. Here are the improvements:
1) My knee pain doesnít wake me up at night as often (still does sometimes)
2) While I still have medial pain in both knees, the sensation of inflammation is less
3) I am walking a bit further, and am able to do 1 km on my bike without a flare up
4) The left is maybe a bit better, yet the right was really screwed up so less improvement there
My concerns are:

1) Have I just found a way to modify my life so the discomfort is manageable or am I slowly getting better?
2) Just when I think things are holding steady and improving, I have a setback. This makes me feel like nothing is actually making a difference and that the lessening of discomfort is only due to less activity , nothing else.
3) I am still scared that I will be stuck with this for the rest of my life
4) keeping up this routine of rest and controlled activity is getting difficult as I just want to live my life.

I only do some daily exercises for muscles around the knee and hip/glute strength. The rest is resting and a limited amount of gentle walking and a daily 1 km loop on my bike. (Which is more for mental health I think!) I do use voltaren every evening (occasionally during the day) to help deal with extra discomfort/pain. I started this journey with icing three times a day yet I donít feel I need that as much anymore (so perhaps that is an improvement as well)

I would love to hear from others in my situation. The frustrating part for me is that my knees LOOK fine, I have range of motion and my knees donít feel like they will give way and my balance/core strength is quite good. It is just that if I try to do what I used to as far as activity the pain level goes up and ends up in days of a flare up situation. As some of you may know from my other posts, this is now well over a year-heading into two years of this crap.

Just looking for more advice as to how you overcame this or how you are dealing with a similar situation. On one hand I feel fortunate as my issues arenít as severe as many on this site. Yet it is a persistent problem and has changed me from a happy, very active individual to someone who is mainly sedentary and prone to feeling depressed.

Offline SuspectDevice

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Re: Update (Over a year and frustrated)-this is slow going:(
« Reply #1 on: June 04, 2020, 11:00:35 PM »
I'm 8 years into it now!

My knees just continue to improve. Probably back to 90%+ normal now. The PFPS symptoms (i.e. loss of tissue homeostasis symptoms as per Dr Dye's theories) of constant burning & siffness (feels like all your cartilage disappeared within a month or so) have almost completely resolved. Key remaining symptom is intermittent pain from patella chondromalacia, but I've had that for decades & it is much easier to live with.

So I'm doing more cycling (up to 2hrs hard), and some more regular run/walk sessions. Also regular leg/hip/glute strength work. I think this has really helped my recovery, but you have to get to a certain level of improvement before you can introduce this, else you will go backwards (which is why almost all physiotherapy fails with this condition).

Covid19 has been a Godsend for me as I've been working from home & love it.  I realise what a negative impact going to the office every day was having on my mental health & hence probably my knee pain.  I'm going to see if I can work from home more when this thing is over. Only downside is pools are shut, so no swimming.  Hoping they might open this month though.  Never thought I'd miss swimming so much!
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline kawi_girl

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Re: Update (Over a year and frustrated)-this is slow going:(
« Reply #2 on: June 06, 2020, 10:16:19 PM »
Great to hear about your progress and current positive situation, SuspectDevice, you have had a long road to recovery.

Donít take this the wrong way, I am praying that mine wonít be as long yet who knows. I am constantly researching and lately Iím wondering if my problem is more Excessive Lateral Pressure Syndrome (ELPS) as a lot of my symptoms are relatable to this. My pain or discomfort is 97% in the medial tissues with the right being worse by far. Even though it can also feel like itís deep in the joint, referred pain can be funny so itís hard to know. I discovered a website by Mike Reinold (MikeReinold.com) and there is a ton of info on there, he seems pretty legit yet as with anything on the internet do your research! In a nutshell though, he does refer to dr. Dyes research and feels that to label a patient with PFPS is basically telling them you have no idea whatís wrong with them. He thinks the road to recovery is finding and treating the problem that created the symptoms, not just treating the symptoms. I do agree with that! Of course, not always easy.

The past 5 days I have had a bad flair up so feeling pretty discouraged right now, yet Iím happy to read of your success.

Offline SuspectDevice

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Re: Update (Over a year and frustrated)-this is slow going:(
« Reply #3 on: June 08, 2020, 12:05:42 PM »
Great to hear about your progress and current positive situation, SuspectDevice, you have had a long road to recovery.

Donít take this the wrong way, I am praying that mine wonít be as long yet who knows. I am constantly researching and lately Iím wondering if my problem is more Excessive Lateral Pressure Syndrome (ELPS) as a lot of my symptoms are relatable to this. My pain or discomfort is 97% in the medial tissues with the right being worse by far. Even though it can also feel like itís deep in the joint, referred pain can be funny so itís hard to know. I discovered a website by Mike Reinold (MikeReinold.com) and there is a ton of info on there, he seems pretty legit yet as with anything on the internet do your research! In a nutshell though, he does refer to dr. Dyes research and feels that to label a patient with PFPS is basically telling them you have no idea whatís wrong with them. He thinks the road to recovery is finding and treating the problem that created the symptoms, not just treating the symptoms. I do agree with that! Of course, not always easy.

The past 5 days I have had a bad flair up so feeling pretty discouraged right now, yet Iím happy to read of your success.

Yeah, the focus of my pain was definitely not medial (other than for the initial medial meniscus tear), it was anterior right under the kneecap, though it moved about a bit.

I've read the same re PFPS & my othro said exactly that - they have no idea.

I had flare ups all the time.  I recall the last one was when I rode my mtb with new knee guards to protect them from crashes (because I have crashes  :o).  I was certain they'd caused it, and did not wear them for months, but now I wear them every ride with no issues.  It is really only the last 6mths I've had no flares.  So hang in there!
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline BusterCatLegs

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Re: Update (Over a year and frustrated)-this is slow going:(
« Reply #4 on: June 11, 2020, 03:13:33 PM »
It really is a process of recovery that takes years. I am hopeful that I will still improve and I think I actually will. The body does an amazing job of repairing.... I hate to say this but you kind of just have to believe it will. The signs were so minuscule though along the way...sometimes other people would have to point them out to me.

I try to look for improvements month to month. Week to week just frustrates me and I don't see anything. And then there were slow periods....

I kind of feel like there are tissue changes in my fat pads. There are cells that have the ability to produce the wrong kind of tissue in there so I need to wait for that to get fixed somehow...apparently that can take years. There can be scar tissue or ossification....

Anyway, I wish everyone the very best. And thank you suspectdevice for your continued posts. They kept me from jumping off a bridge during the worst of this.


Offline kawi_girl

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Re: Update (Over a year and frustrated)-this is slow going:(
« Reply #5 on: June 11, 2020, 04:48:07 PM »
Thanks to both of you for posting here.

I am over my flare up, thank goodness. I am trying a bit of a different approach for the next two weeks (I feel like an ongoing experiment as Iím sure you all can relate to) and reducing my steps again yet trying to do a bit more on the bike. I am hoping that the irritation in my right knee can be low enough to handle a bit more riding, as Iíve noticed that I still canít handle a lot of force on my knees so I want to keep movement going yet reduce load.

Tomorrow I am being assessed for orthotics. I do feel that with PFPS and from research that I have read that they are NOT the answer yet for a small percentage of people they have been known to help. As it has been almost two years now I am willing to investigate this more. The clinic Iím going to has a great reputation, and they are known to be honest about whether orthotics may be of help to their clients or not. My PT referred me there. I think itís a relatively harmless thing to try. If I choose to get them I can always stop if they are causing other issues. ( ie. back pain)

Has anyone here had any experience with trying orthotics, good or bad?

The reason I feel they MIGHT help is that I do have pronation and since most of my pain tends to be medial maybe there is a link in my kinetic chain that can be addressed. Pronation can cause those medial tissues to be stressed, in some people. Guess I will see what they say! I have been wearing very good footwear (both indoors and out) yet perhaps that is still not enough? Of course, if itís just a matter of more relative rest and healing this may not make a difference. Yet if it is a tool to assist in healing Iím willing to give it a go!

I am continuing with hip strengthening as well as my core.

Offline BusterCatLegs

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Re: Update (Over a year and frustrated)-this is slow going:(
« Reply #6 on: June 12, 2020, 01:00:39 PM »
Oh yeah, that's another thing. I only wear one type of shoes and cannot seem to break myself of them. They seem to have the perfect heel size for my problem which is a very slight lift. I wear them literally all the time. I honestly think this may have contributed to some ankle issues- my ankles seem to be very weak now. Who knows!

I am trying to practice walking barefoot but this doesn't feel great on my knees. Someday I will be brave enough to wear another pair of shoes...

For now it is Onitsuka Tiger Ultimate 81s FOREVER. They come in so many fun colors! Good luck to all of you and thank you for your contributions again. Would have been in deep trouble without. I'll check in again in a few months!















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