PKR JusticeRider’s rehab adventure

benne68

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There was a time when I would have thought 4,000 steps in a day was nothing, but considering how difficult this recovery has been, I am thrilled that 4,000 steps a day feels good. If things stay on track, I’ll aim for that level for the rest of this week and see about increasing that next week (all according to how Miss Knee responds). Incremental progress is what I have learned she prefers. Patience is everything!
Congratulations! 4,000 steps/day is great at this point in your recovery. And don't worry; you will be able to double or even triple that with time. ( At 14 months post-op, I just returned from two weeks of travel and walked an average of 15,000 steps a day! That was unthinkable before my TKR.)

And yes, your strategy of adding a little bit at a time to see how your knee responds is the smart way to continue to build your daily total. You will get there!
 

Layla

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Wonderful accomplishments, JR!
Navigating stairs with ease and complete forward and backward rotations on the bike.
Your patience is paying off. I see a brighter future on the horizon. Keep up the good work!
@JusticeRider
 

panammaniac

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So happy to see you are doing better! Today is my 2 month mark and I’m feeling a little bit of the ODIC aftermath. Not too bad, but I had 4 days in a row of 10,000 steps and needless to say that wasn’t happening today. Sometimes this recovery is a roller coaster ride, even for those of us who are recovering fairly smoothly. Patience is the key. It’s so easy to want to just jump back to “normal,” and we try it and pay the price for a day or two. It’s very humbling and we have to remind ourselves that we’re still early into a long recovery journey.

Like you, I’m able to go up stairs “normally” for the first time in several years. Going down isn’t so easy yet. It’s more of a balance and not feeling like I’m 100% in control yet than a pain thing.
 
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JusticeRider

JusticeRider

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Thanks all for the encouraging words…it means so much! I went for a walk this afternoon and for the first time, it felt like I could just keep going and going! I’m not going to overthink how well everything is feeling at the moment, I’m just going to enjoy it :SUNsmile:
 
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JusticeRider

JusticeRider

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Hello fellow BoneSmarties! It’s still going quite well over here! I am making myself take everything very slowly because I know that’s what my particular knee really needs. I have worked up to 1 mile walks through my neighborhood. I’m getting about 2 miles total per day with adl’s. Doing 5 minutes on the stationary bike per day now. If all goes according to plan I will slowly work up to 20 min/day by New Years and at some point hopefully lower the seat a click (no rush). On good days I think my limp is gone so long as I walk slowly and consciously. I feel like I have turned a corner!
 
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JusticeRider

JusticeRider

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In other news… First, apologies in advance for the long post! Something interesting happened. It has been brought to my attention that I almost certainly have Hypermobility Spectrum Disorder (but probably not Ehlers-Danlos).

I have family coming for Christmas, including my nephew who I unfortunately haven’t been able to spend much time with because he’s lived across the country from me and had been off doing busy teenage things. Another relative will be bringing their large dog who loves to play with my large dog. Anyway, my sister mentioned that we’ll have to be careful with the dogs playing around my nephew because if they bump into his knees he could subluxate. When I asked her what she meant she said he has Hypermobility Spectrum Disorder. She started describing the health issues it causes him and it was as if she was describing me!

I remembered that the PT at the hospital who had worked with me after my PKR had told me that my knees were hypermobile. My extension right after the surgery on my left knee was -5. He measured my other knee and it was -10! I told her, hmm, maybe I have it too. Many times over the years, my dogs have run into my knee causing it to be incredibly painful. The pain would be severe and last anywhere from a few hours to a few days where I could barely walk. Then it would suddenly resolve on its own. It has happened in other situations too, stepping in a divot in the grass, slipping on mud or ice, or sometimes out of the blue just taking a funny step. I always thought of it as my ‘trick’’ knee. It has happened with my other knee too a couple times, but it was most often the left knee. I never had a doctor be able to explain it to me. They just said I had Chondramalacia but seemed a little puzzled.

I have also had my elbows lock painfully while carrying heavy things with my arms straight down, like buckets of water, where I’d have to stop, put the load down, and sort of ‘pop’ my elbows back in. I’m careful to keep a slight bend in my elbows now. Nearly all my joints pop, clunk, and crack. Even my sternum feels a little funny sometimes and I have to stretch and pop it back in. I just thought that’s how my body is.

I read up on Hypermobility Spectrum Disorder and I fit the profile. There is a scoring system called the Beighton score. If you have a score of 4 or more plus some of the ‘minor criteria’, you’re considered to have it. I scored a 5 plus several of the other criteria. Since it is a connective tissue disorder, it also causes a whole array of symptoms unrelated to the joints and I have a bunch of them. This explains so much! I am going to see my pcp and see if she concurs and will give me a formal diagnosis.

I have 4 questions for the forum:

1) I think my knee was subluxating. Will my patellofemoral replacement prevent that in the future? (I suspect no because I think it’s happened once already since the surgery but not sure)

2) If not, will it at least limit some of the severe pain it used to cause me?

3) Also if not, will the subluxation damage my implant?

4) Is there anything else I should know about Hypermobility and joint replacement?

Thanks for any information anyone can offer!

Edited to say: I looked back at my surgery notes and pt measured -5 and -10 extension
 
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Flashlight

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I had to look up Hypermobility Spectrum Disorder and I watched a couple of YouTube videos on it. You must feel relieved to find out why some of these things happened. I know it must also be confusing as to where you fall on this spectrum and how it affects your knee. Maybe your rheumatologist will be able to answer some of these questions.
Why does everything seem to happen around the holidays? Enjoy your visit. Wishing you the best!
You are doing great in your recovery!
 

Layla

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Hello JR,
It seems your recovery is going really well. I will wish you a Happy Four Month Anniversary a few days early while I am posting on your thread. :)

I am sorry that you may be dealing with Hypermobility Spectrum Disorder. We do have two members currently on the Hip Recovery Forum that have been diagnosed with Ehlers Danlos. A colleague of mine, PolarIce, and Flowerfloosey69. While what you're suspecting offers an explanation for several of the instances you cited, you do need a professional diagnosis and your PCP is certainly a good start. You have some reasonable questions and concerns to address with your Primary and your OS if your assumption is confirmed.

Wishing you only the best as you seek a diagnosis and move forward. Please update us as you learn more and know that we're always available for support. I hope you have a nice Wednesday!
@JusticeRider
 
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JusticeRider

JusticeRider

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Thanks for your responses, @Flashlight and @Layla It is a little bit worrying, but mostly I would just be relieved if this is confirmed. The symptoms are not new…I’ve been experiencing them most of my life. It would mostly just turn out to be a unifying explanation for all the various issues I’ve had. I was surprised to see some of the non-joint related symptoms described, but I have been experiencing those all my life too. I have certainly never let it stop me from doing the things I wanted to do, even if it was more challenging! Adventure still awaits! My only worry is whether the joint Hypermobility would affect my new implant. Meanwhile, things are going well and I think I am healed enough to start cautiously adding in more strengthening exercises! :)
 

Layla

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I have certainly never let it stop me from doing the things I wanted to do, even if it was more challenging! Adventure still awaits!
That's the attitude to have, if the disorder is confirmed. Not all are able to be as optimistic, so good for you!
 
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JusticeRider

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I just had to share…Last night a friend and I went out for a moonlight ride in the snow. We rode the horses through fields, down the trail, along the river, over bridges. It was dark and quiet and the moon was huge and bright and the white snow was glowing. The water was dark and beautiful in the river. We rode down and the horses dipped their toes in. We rode for just over an hour and it was absolutely magical!

This was my third ride back since the surgery. The first time was quite early and while I felt triumphant to have done it, I was nervous and fragile and frankly terrified I would fall and wreck my knee. The second time was a few weeks later and much better. I rode in an arena with a friend and just walked around the track and did some slow trotting. I still felt a little vulnerable. This time was very different. I felt something like my old confidence! I didn’t think about my knee! I was fully in the moment, enjoying every twinkle of snow under the moon.

The best part is it looks like my knee handled it well! I haven’t tested it much yet today, but I think it’s ok! I’m on cloud 9
 

Jockette

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That is wonderful! :happydance:
 
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Layla

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Love this!
Somehow over the river and through the woods to grandmother's house we go started playing in my head while reading the descriptive update of your moonlit ride. :wink: The reflection of the moon on the dark water must have been beautiful. Good for you, JR....you're back!
@JusticeRider
 
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djklaugh

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@JusticeRider Wow that does indeed sound like a magical ride! Congratulations :loveshwr: :horseriding:
 

sistersinhim

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What a wonderful, uplifting post1 Thank you for sharing your triumph! I'm sure this give hope to many that are coming up behind you.
 

Layla

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Four months to date since your PKR. Happy Four Month Anniversary!
Wishing you more moonlit rides this season and joy filled times with those you love.
May your blessings be many in the New Year. :xmas-wave-smiley-emoticon:
@JusticeRider
 
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JusticeRider

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Thank you, @Layla ! I’m so glad I made it this far! The first few months were ROUGH. I think things are looking up, thank god! Just gonna keep chipping away at this recovery. I’m 1/3 of the way now!! I really don’t know what I would have done without BoneSmart this whole time. I would have been utterly lost, so thank you so much for doing what you do :flwrysmile:
 
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JusticeRider

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Ok! Well, since it’s just past 4 months, and since I just had a birthday, and since Christmas is right around the corner…I thought I’d post a full update with the good and the bad of where I’m at right now.

First, the GOOD: My pain levels are very low. I would characterize it more as discomfort now, and it’s usually hardly noticeable. My swelling has improved a LOT. That has been my biggest challenge and I’m so glad it’s improved so much. It still looks bigger than my other knee, and it still swells some in the evening, mostly if I’ve been extra active, but it is nothing like it was a month or two ago. My ROM is getting better. I haven’t measured it and I don’t plan to anytime soon but I can tell because I can go up stairs now, I can pedal the bike now, I can put on shoes and socks easier and get in and out of the car easier, etc.

As a result of the improved ROM and reduction in swelling, my limp is almost gone. It was pretty gnarly for a while there. I still have to concentrate on walking properly but I can actually do it! My knee is getting stronger and more resilient. I can step over and around things better now and walk on more uneven ground and it doesn’t feel like any odd movement will hurt or make my knee give out. I can comfortably squat a little bit with even weight on both legs. When I stand on that foot my leg feels solid.

I am able to get more exercise now, albeit light exercise. I am walking up to 1 -1/2 miles in my neighborhood now and getting around 6,000 steps total most days. I am riding the stationary bike for 10-15 minutes every afternoon, and pedaling at a moderate tempo. I can be on my feet for 2-3 hours without pain or much swelling. Which means I can go see live music and mingle with friends, cook a big meal, do an escape room, etc. Fun stuff! I’m feeling safer working around my horse (leading, grooming, etc).

Best of all, I can ride! I haven’t tried riding in the saddle yet (feet in stirrups) but bareback is going great. I’m feeling much more secure up there. I’m really loving it! Seeing all this progress has been good for my mental health. I have hope! :yahoo:

Will post again soon with the bad…
:scare:
 

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