I found this recent comment interesting, as one of the most frustrating aspects of healing bad knees is getting the "Goldilocks principle" right: You don't want to move too much. But you don't want to move too little either.
I find your book useful as you say that during your initial months, you were not sure if you were improving or not and it was by month 7 that you knew your plan was working.
So you need to move your knees. To me, that's like a First Principle, not open for debate. Knees that don't move at all will only get worse.
But then how much do you move them if they hurt all the time/most of the time/some of the time? And how can you tell you're on the right track with your program?
This is very, very hard to do. It's where many people fail, I'm sure. There is no "Just do this" blueprint. Just imagine how easy healing would be if the prescription was something like, "Take 800 steps a day for the first four weeks, then increase that by 200 steps a day for the next four weeks, etc."
The problem is, that may be just right for your knees. Or too much. Or too little. Or your best approach to healing may not be through walking at all.
There can be a lot of experimentation during those first few months that feels more like flailing around. It's important not to push your knees too hard. But you do have to push them at least a little.
So what does that mean?
What helped me the most was when I decided to err on the conservative side, in a big way. I started slow, very slow, then chose to build from there. That's not always an easy path to follow, especially for a Type A personality, when you feel you should be doing more.
But the unfortunate reality is that, yes, there can be entire months where you can't tell if you're getting better, backsliding, or simply moving in place. It's frustrating. But you can take some solace in knowing that many others go through the same thing. You're not alone!
I try to encourage myself and to think that even if we are feeling that we might be moving in place (or oscillating between better and worse) there still might happen positive changes in the joints. We just don't feel them yet. So all this time in the beginning when one is trying to figure out the winning programme and trying different things may contribute to healing even if the effect is not immediate. This is little bit the idea of mending points and breaking points Richard presented in some old post.
ReplyDeleteI agree. I am definitely a Type A personality (which probably got me into this situation with knee pain). I was an athlete also and am therefore struggling with a huge life change and miss the endorphins and structure to my days.
ReplyDeleteI have reduced to walking and swimming without legs but am no better/possibly worse and so I may reduce my walking more. It has only been 3 months or a huge change in lifestyle however so early days.
I find I need some physical activity for my mental health (which has deteriorated) and I cherish the little walks and swims. It is very tough mentally when you have a radical life change in terms of activity and cannot see any gains from all the resting. It's also really hard to be so disciplined with restricting activity. Effectively with the exception of work, I have shut my life down. I sometimes feel I'm going down a self treatment path which may not work. I guess if that's the case, I re-assess my options.
Your book also mentions the mental aspect of all this which I am glad you shared. I find it exhausting.
Things that have helped are:
1. Concentrationing on what I can do.
2. Having time in a day where I do not research cartilage/chondromalacia/patient forums etc.
3. Exploring new interests: photography/more reading/films/kayaking
4. Not telling friends too much about my condition as I sometimes get well meaning advice to take this or that supplement/realign my lower limbs/strengthen my VMO/orthotics/you are too young to not be able to do 'X'/have you seen this PT? etc. I know it all comes from a good place, but it can be exhausting so I usually say that I have knee pain and I am working on getting better.
5. Coming up with a list of things I enjoy that make me feel a little better.
I have felt like giving up several times but am continuing to fight. I come back to this blog often as I find some excellent information and view points.
If anyone can share some thoughts on how to stay positive, that would be amazing.
Meanwhile, I'll keep up experimenting with movement and rest.
It's a shame for sure that no one can prescribe an exercise program that is guaranteed improvement. I have a feeling that I am still doing too much.
I am hugely grateful for your book and this blog.
I can relate to all of that. Took me about 5-6 years to be confident I was making real progress.
DeleteDo you have the burning type pain under the kneecaps? For me, that is the key sign the problem is 'biochemical' or has a biochemical component (i.e. the Dr Scott Dye loss of tissue homeostasis problem) rather than just 'structural' (i.e. cartilage damage, mis-alignment, VMO weakness etc).
However, I believe the biochemical problem can be brought on by a structural problem (in my case, probably patella chonromalacia and hard triathlon training).
But once you are in the biochemical problem area, that is what you have to address first, and by doing so, you may well also improve the structural problem. In my case, rest followed by strengthening areas which take pressure off the knees (hips, glutes, core) led to a long term (very long term!) fix.
And in the meantime, I lost my triathlon obsession and got back into other hobbies, such that I now only do short triathlons and have many other interests.
Staying positive? It is incredibly hard if like me, your knees ache & burn all your waking hours. The only thing I can say is you can get better. I still can't believe how bad my knees were in 2012-2016, and how good they are now. I seems impossible.
Yes, I definitely have the loss of homeostasis/tissue failure that Scott Dye so eloquently describes. I have the burning sensation all the time. I think this is synovitis and possibly hypermetabolic bone. Weirdly, in contrast to yourself and Richard, mine surrounds each knee cap and I don't feel anything behind the knee cap....yet. Sitting with knees flexed doesn't worsen things and many times I prefer it.
DeleteMy cartilage looks fine on MRI but I would imagine it's soft- there's a small effusion on the scans and I have massive loss of function. I think if I had an arthroscopy, the probe would push into soft cartilage.
I completely agree with getting tissue fatigue under control, and then strengthening generally.
Your statement 'it seems impossible' is encouraging as that's how I feel just now.
It makes sense that a joint that is a living entity, should be able to have some degree of healing.
I really appreciate your comments especially when you have trodden this path.
I walked 2-3 miles a day, played tennis...always active. At 50 I had a motor vehicle accident that obliterated my cartilage and fractured my patella. I am 22 mos in and I just had arthroscopy where they repaired plica, relocated patella and smoothed cartilage. To me 12 mos out was too long to find a doc that cared enough to try some things. Resorted to surgery finally.
DeleteBut I will tell u the burning has gone from a 10 in both knees to more like a 4 in the non operated knee over 22 mos. Ur knees will get better...it just takes a lot of time sometimes. Love 2 u
Thank you so much for the encouragement. I'm glad the burning you had has reduced after your surgery. I find the most useful comments are from people who have experienced knee problems.
DeleteDefinitely trying to stay positive and develop other interests.
So I looked back at my post and after I wrote it, I had a setback. One oversone PT session and I'm currently at an 8 on pain in both knees. This goes along with what others are saying about that fine line in doing enough but not too much. Back to the Dr this week but am now taking at least a week off of PT and do more just very light motion to see if it improves. I guess I'm conducting an experiment, you'd say.
DeleteI also wanted to tell you that I cannot walk without assistance except around the house. When I go out I am.on crutches ....22 mos of crutches. So every body has their own pain that is so real and I dont want to minimize that for you... but just want to say if you are walking, that in itself is just so much. :)
DeleteI'm sorry to hear that. I agree as well that it's important to focus on what we can do. I hope you feel a bit better soon.
DeleteStephanie, do you mind if I ask what made you wait so long before you opted for surgery? It sounds like your initial injury was pretty bad. I wish you all the best with your rehab.
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DeleteI had 2 Drs before my current one and neither of them wanted to operate on my knee. I still think my first Dr shouldve operated on the patella after the crash happened. It was an avulsion fracture...chunk out of It. It took 18 mos to heal. Once it healed and I still couldnt walk my 3rd doc decided to do surgery to see if he could correct other issues.
DeleteI see. That sounds bad. I guess they had their reasons for not operating but it may have been a bad decision. I hope you get over your setback soon. I know how bad it feels.
DeleteThank you Honeyblush...I appteciate that a lot.
DeleteWell, I have hard time staying positive myself but journaling and giving knee scores (note that these are not pain scores but functionality scores) help me with setbacks. I recently had one and could track when was the last time my knee felt this bad (five weeks ago), and now that I seem to be recovering from it I see that the setback lasted approx two weeks. This way I don't need to relay only on my feelings which tend to be on the negative side but I can read my journal to check where I am.
ReplyDeleteThat makes a lot of sense. Thank you.
DeleteOne thing that I have learned in my still hoping for the best journey is that even the smallest things matter. I was trying everything and some days my knees were ok and other they felt like trash. After a while I began to realize the way I sleep was affecting it. I use to lay on my stomach or at most on my side. Then I soon realized that the pressure of the knees against the bed was hurting me. As I cannot fall asleep in another position (believe me, I tryied) I started putting a pillow under my shin so the knees don't touch the bed so hard and suddenly it all became better. Nowadays I can sprint uphill, do some agility drills like ickey shuffle and squat about 40 pounds (I know that's not much but if you compare with last year it's a ton of improvements).
ReplyDeleteHas anyone tried swimming? If so, what kind of results did you get?
ReplyDeleteMy thoughts on swimming for you are that you can probably swim but only use upper body (eg pull buoy) or kick straight legs from the hips (difficult to do). Definitely avoid breast stroke kick. This is as your avulsion fracture was patella and therefore your patellofemoral joint is at risk of aggravation.
DeleteYou could try pool exercises gently as it's low body weight exercise. A few posters have mentioned they had results from this.
I think, try an exercise and see how your knees like it. If it doesn't aggravate within an extended time period, then you are OK.
That said, I oftentimes don't have the patience to follow my own advice.
I wanted to tell you it sounds like it could be a plica issue.
DeleteIf it is cartilage, your body will create fibrocartilage. They saw mine during my arthroscopy.
I'm sending this in response to Stephanie and Lindsay about swimming.
DeleteI had success with my knee with gentle water movements. I want to emphasize this is totally different from "swimming." For me, the act of swimming using my legs was too much for my knee joint to handle and would for sure
cause a flare up.
Instead, I got a book on water therapy for people with injured body parts and I did the ones for bad knees and people preparing for or recovering from knee surgery. It is called The Complete Waterpower Workout Book:
Programs for Fitness, Injury Prevention, and Healing. By Lynda Huey and Robert Forster.
I was unable to do ALL of the movements for people with bad knees. I had to slowly experiment. I found some were “safe." I found some I had to build up to. But it was exciting when I could incrementally see progress.
- -Some are done in the deep end while wearing a flotation belt. (These can also easily be done in open water beyond the waves.)
-- Some are done while standing waist/chest high in the shallower end.
-- Some are done while holding into the side of the pool.
Initially I wore a neoprene knee brace. But. I eventually took it off — which was scary and caused me to regress a little in terms of my water movements, but I was able to build up again and it was totally worth it. :)
My back story is that I had a very very long struggle with debilitating knee pain. Previously it was so bad I could sometimes barely walk -- even to the point of using a wheel chair on multiple occasions. But, now my knee is doing so well that I can hike for miles! I can road bike up hills! I can do open water swimming for over a mile. I can do swing dancing and rotary waltzing. In 2020 i started a new hobby of backpacking which you can imagine is very hard on knees, but, I can do it. It's amazing.
If you want to learn more about my knee "success story" (which is unfortunately very very very long and frustrating and I hope isn't too discourating to anyone), here is a summary that Richard wrote:
https://savingmyknees.blogspot.com/2019/01/a-success-story-of-overcoming-knee-pain.html
The amazing news is that my knee seems to be fully OK now. However, i still worry sometimes I may have a relapse if I get complacent, so, I'm trying to keep on moving and keeping the knee joint healthy.
Best wishes.
Knee Pain- thanks for this. I've purchased the book and am giving it a go. Very helpful.
DeleteHi Lindsay. I hope it helps. Let us know how it goes.
DeleteThank you Lindsay. Its been 10 days today since my backside after my last therapy session. I am so much better with pain today. Having a lot of anxiety about going back although Dr gave me a new 6 am order on Wed. It is frustrating.
ReplyDelete6 week...not 6 am
ReplyDeleteI am no expert on any of this, but I think a basic rule is that if an exercise hurts/causes more symptoms for more than 24-48hrs- don't do it. If you have had 10 days of increased pain after PT, I would think about a PT with a joint-strengthening approach.
ReplyDeleteIt's all very difficult and incredibly frustrating.
Yes...it has certainly become counterproductive for me. Thank you.
ReplyDelete