TKR Rockgirl4's Recovery---already full of surprises.

[Ladyala]

Oh I'm so sorry that stinks! It's so hard when you feel like you're going backwards. Praying you get relief soon!!

 

[luvcats]

I'm so sorry you're in so much pain. I hope the doc will find some middle ground for you. I cant imagine the frustration of feeling like 10 steps back.

 

[Rockgirl4]

Well, it's amazing how 14 hours can turn things around....

I saw my surgeon yesterday, and he was thrilled with my progress. He also wasn't surprised pain and inflammation crept back in without the strong NSAID. He put me back on the Arthrotec (anti-inflammatory) for 2 weeks (to get me over the hump), Then I can try OTC meds if I still something. I can quit PT anytime, as he agrees no weight-bearing type of strength training right now---it will increase the inflammation we're trying so hard to squash. I have the go-ahead in 3-4 wks to start on my own, considering my 10 other knee surgeries and rehabs. I'm an old pro!!!

An interesting note----he said Arthrotec is an NSAID (non steroidal anti-inflammatory drug) that works best in people who tend to make more scar tissue and have arthrofibrosis. The pain we feel is from the ongoing inflammation and the scar tissue/adhesions it creates. Thus, this med works specifically for joint stiffness. His "normal" patients don't get hardly any benefit from it, but people like me all swear it's this miracle drug and wonderful pain reliever. Apparently those of us that "inflame" easily and over-produce scar tissue/adhesions do best with it.

Another interesting note---and not all here will agree---he put me firmly in the "Arthrofibrosis" category, based on my 10-surgery knee history, previous scarring, what he saw/cut out of my knee during the TKR, plus the last 9 weeks of TKR recovery. He has treated me like an Arthrofibrosis patient. We luckily managed the inflammation correctly and stayed ahead of it with pharmaceutical help and gentle PT. . Now I just keep it up.

I was told to keep riding my bike 5-10 minutes a day and avoid increased inflammation---otherwise I might lose and/or no longer continue to gain range of motion. Thus, don't get all gung-ho and mess this up!!! I should expect a longer recovery because of how slowly I heal and how slowly inflammation dissipates from my body. He warned me not to get discouraged at the snail's pace of recovery, as "slow" is perfectly OK and warranted in this case. IN his words, I had 2 strikes against me from the start---the history of inflammation and the scarring problems. Then he joked I'd be a "normal" PT's worst nightmare and was glad I found my current, gentle PT.

Overall, he said my 9-wk old knee is acting like a 6-wk old knee, and that's just ME!!!! It's MY normal, and he was thankful I had loads of surgical history to share with him when I first met him.....So as long as I treat it like a 6-wk old knee, thing should be fine. I go back in 3 months!!

 

[Celle]

An interesting note----he said Arthrotec is an NSAID (non steroidal anti-inflammatory drug) that works best in people who tend to make more scar tissue and have arthrofibrosis. The pain we feel is from the ongoing inflammation and the scar tissue/adhesions it creates. Thus, this med works specifically for joint stiffness. His "normal" patients don't get hardly any benefit from it, but people like me all swear it's this miracle drug and wonderful pain reliever. Apparently those of us that "inflame" easily and over-produce scar tissue/adhesions do best with it.

Well, that's news to me.

Arthrotec contains Diclofenac (Voltaren), which is an NSAID, and Misoprostol, which reduces stomach acid and replaces protective substances in the stomach that are reduced by NSAIDs.
Being an anti-inflammatory, Diclofenac will probably reduce stiffness. However, I'm not at all convinced by what your surgeon said about it working better for people who tend to develop adhesions.

However, if you feel it's helping you, take it. Just be aware that, even with the added protection of Misoprostol in the mix, it could cause gastric irritation and bleeding. If that does happen, stop taking the medication immediately, and notify your doctor.

 

[Rockgirl4]

So I went and joined the ODIC!!!!! Just when I think I won't do anything stupid.......

Yesterday was exactly 10 wks since my TKR, and I sat outside to enjoy this wonderful weather we're having in Missouri. I was about to go in when a neighbor came by walking her dog. I hadn't seen her since last winter, so we stood and talked for probably 45 minutes. Yes, you read that right----I STOOD and talked.

The knee had been back to feeling great this week, and I even helped clean out my car yesterday after PT. Then I made my stupid decision to try and be normal, as I didn't know how fast time was going to fly. You better believe I won't be doing that again.

What made things worse is I HAD to go to the grocery today for something (long story!!). I ran into one of my son's teachers from years ago, and I also saw a good friend I hadn't spoken to since Spring. I actually made up a lie to get rid of the friend, as she would NOT stop talking, even after I started to walk away twice, telling her my knee was DONE!!!! As is my luck, I never run into anybody unless I'm in a hurry or hurting.

Plus, I had $18 worth of ground turkey that had to be cooked tonight or spoil. So I still have some cooking to do----though there WILL be a chair right there to plop down in.
This is why I stay home!!!!

 

[Rockgirl4]

I took my first Percoset (Oxycodone) in 4 wks tonight. Every time I bend or straighten my knee there is a sharp pain on the medial side. I'm not worried at all. I know it's from 2 days of TOO MUCH STANDING.

The problem is tomorrow is Registration for my son at his new school building, and there's no one else that can take him but me. I'm hoping it's fast and simple, as I fill out most things online, and he's been in the district since Kindergarten. It's middle school though (7th grade), and the poor kid is a nervous wreck. I promised him I'd be the calm, cool, and collected one, but it's going to be a VERY interesting day of trying to sit every chance I get. Whoever we see, I'm NOT going to stop and talk---no more unnecessary standing for this gal!!!

Note to Any Readers---Beware of shooting yourself in the foot and trying to be "normal" too soon. If only there was an emoji for kicking yourself in the behind.

 

[Ladyala]

Oh no!! I'm so sorry your hurting. Its crazy how fast we get complacent & then bam! Knee says helloooo, what were you thinking???

Praying you get a good night's sleep, the family is super helpful tomorrow & you are able to elevate & ice as much as possible.

 

[Rockgirl4]

This is mostly for me, but maybe someone will find it interesting reading one day....

I thought my recovery was going super slow for 10 wks, even with knowing why things were slow and why I have to add things slowly. There were no great mysteries, and I had a lot of my life back. Then I made the mistake of standing too much 2 nights ago, knowing how much I HAD to get done today. This has made me realize a few things.....

1) I was doing MUCH better than I thought with walking and normal, daily activities.
2) So what if MY type of exercise wasn't happening much yet. Most of my pain was gone, and I could do everything I needed to, except maybe vacuuming and cleaning my whole house in a day. I hadn't realized how far I had come.
3) The pain I was still having is mostly achey/nagging---not bad pain at all, and nothing that was keeping me awake at night. It wasn't forcing me to sit constantly either like some days before the TKR. There were also no surprises like before the TKR, such as buckling, catching, swelling from out of nowhere.
4) I just didn't realize how far I had progressed, because I'm so impatient.

I think many of us need at least one episode like this to remind us how far we had come. It's a good lesson in being kind to ourselves, putting our health first, and trying NOT to be superwoman all of the time. I will definitely be more "selfish" these next few months, knowing it's all part of the process.

 

[Rockgirl4]

@Ladyala Thank you so much for the thoughts. I have PT in the morning, but it's mostly stretching, massage, and some balance work. I'm still going, but mostly to see if she can calm things down some with the massage. My leg muscles are complaining some tonight, so I want to prevent them from freaking out too much. My family will definitely be more helpful if I need them to, but like most moms, I hate asking.

My husband is just a little ticked with me, but he knows I just want some normalcy and enjoyed my conversation with the neighbor. He really is great, and he never minds helping. He just hates to see me hurt needlessly. BUT----sometimes I don't mind he and my son getting a reminder that I'm still not able to do EVERYTHING and need help occasionally.

Thanks again, and I hope you also get a good night's sleep.

 

[luvcats]

I think many of us need at least one episode like this to remind us how far we had come. It's a good lesson in being kind to ourselves, putting our health first, and trying NOT to be superwoman all of the time.

I agree 100% with this.
I'm so sorry you got a free renewal membership to ODIC. But on the other hand, standing for 45 minutes???? Woohoo!!! I can't even remember the last time I could stand for that long. You really have come so far. Its always hard to be patient at the end.

 

[Rockgirl4]

SHOCKER!!!!!

I tried (and failed!) going down some small stairs at my son's school this afternoon. This got me to thinking maybe I should attempt to go down some stairs right after I had ridden my stationary bike and loosened the knee up.

So I rode 5 minutes, then tried to descend my home stairs to the basement. ((drum roll please.......))

I did it!!!! I held on for dear life and went super slow, but it didn't hurt and the bend was natural! Can you say PROGRESS??!!

 

[luvcats]

Woohoo!!!!
You'll be pleased to know that my PT told me the other day that down stairs is the hardest part and one of the last things people get back!!!! Go You! Home stretch!

 

[Rockgirl4]

@luvcats Believe me---I did not expect it to happen, knowing stairs are always last. It took me a good 8 months after my ACI surgery in 2015. I wasn't sure it would ever happen back then.

So yeah--I did this purely as an experiment to see if maybe I could do shorter-rise stairs when the knee is loose, as I'm not always good about riding my stationary bike until later in the day, after all my errands. This was a nice incentive.

It also showed me I probably have >104 degrees flexion during part of the day (the highest measured at PT ~2 wks ago). I know one needs more than that to do stairs, so in the end, this simply gave me another reassurance that things are better than I thought, if you know what I mean.Just another good sign of progress, even if the knee does still hurt/ache a lot.

 

[Rockgirl4]

I saw my other PT today---the one who has worked miracles for my lower back the last 11 yrs.

Things were not as bad as expected, though she's certain the mild sciatica is from L5 being so twisted and irritated, as L5 is often involved when sciatica is present. L5 is my nemesis and has been for decades, being super flexible and able to rotate TOO easily. Luckily though, L3 and L4 had stayed put.

She was able to realign L5, my sacrum (it was twisted the usual direction for me), plus the SI Joint if one wants to get picky. The short, dumbed-down version is both pelvic bones (sacrum and ilium) along with L5 did their usual "Let's get all crooked for Lisa again" . She fixed it, as it's the same thing that ALWAYS happens, and now I'm super sore---but it will only last a day. Now that things are where they're supposed to be, I have to do 4 of my usual exercises 2X day, every day, if I want things to stay put. She'll reassess next Friday, as usually one area moves again. It takes us 3-4 sessions and lots of time on my part stretching/strengthening to achieve long-term success. It's a nice kick in the pants to be active again, and it won't stress the knee much.

Lastly, I know many of here followed the Bonesmart way 100% or close to it. I did no strength training AT ALL, and I'm just over 10 wks post-op. BUT----there were casualties!!!!! My hamstring on the TKR leg is the weakest it's been since after my ACI arthrotomy in 2015. This is problematic because your hamstrings attach to your sacrum and keep it in a certain position----or think of it as the hamtrings prevents it from being pulled in the WRONG direction. She and I agreed I'll do some non-weightbearing hamstring exercises to get some strength back.

Talk about trying to keep two parts of your body happy at the same time. It's never a dull moment here!

 

[luvcats]

L5 is such a diva! I've had a tendency to sciatica for a few years because of my limp. My chiropractor will put it right, I'd be blessedly pain free for a week or so, and then she'd just slither right back out. I am so looking forward to being able to get my strength balanced.

For me, that's the best thing about PT, is having access to someone much more knowledgeable than I am to track down the source of specific issues and suggest ways to correct the real problem in a safe, careful way. Getting our health back isn't only about our new baby knees!

I'm glad you have access to such wonderful, knowledgeable people who know about your personal body.

 

[Rockgirl4]

It's 5:00 AM in Missouri, and I've been awake for 2 1/2 hrs. I am having one of the worst nights sleep (or lack there of) in years. I can't get comfortable. One position makes the knee ache, and another bothers my back. Friday's PT for my back made my entire body achy and annoyed. I know this too shall pass, but I wish it would go away already. I took a short nap in the afternoon, and I think it messed me up....

Speaking of sleep---I know a few others members have discussed anxiety issues post-op so I'll share too. Most of my sleep issues are related to anxiety, and it rears its head every August for various reasons. It used to always be related to my son's food allergies and asthma----meeting the new teacher, talking to the nurse, getting the paperwork in order, stocking up on his safe foods, etc. This year has nothing to do with my son and school though---just everything else such as MY BODY!!!! In years past, I've had to take anxiety medicine July/Aug/Sept if I want to sleep at all. I hate taking it though because it piles on the pounds and gives me a very upset stomach for the first week.

Not sleeping makes things worse though, so I may change my tune if I have another night like THIS. I just don't do well with messed up sleep.

On a happier note, my husband and I are going to dinner tonight while our son hangs with the grandparents. I'm looking forward to my first steak in 5 months. There might even be a new laptop mixed in. Mine is on its last leg. Hmmmm.....maybe it needs a TKR!!

 

[luvcats]

I'm so sorry you're not sleeping. I did last night, but only after 2 nights of almost nothing.
Bad sleep makes everything in life worse. Stress, pain, mood. Bleh.

Have you seen any of the new research that is linking anxiety to low iron levels? I am seeing more and more articles about it. I found out quite randomly and thought 'what could it hurt?', and tried a low level supplement. For me, and then later for my sister after I told her, it's been a life changer. Since you're up anyway...lol Might be worth a google.

Steak dinner and a laptop!!! Go you!

 

[Glosnana]

I've never had anxiety until just prior to and since my TKR. It has been debilitating in that it's been focussed on all aspects of my body. Any new twinge or ache is impossible to dismiss!! I've mentioned in my thread that I'm a counselor and assist people to overcome anxiety with different tools- not able to do it for myself! I'll look into the iron supplement though. I think being incapacitated for so many weeks and upset sleeping patterns gives us too much thinking time maybe? Hope you get some peace of mind

 

[Rockgirl4]

A person knows they're making progress when they start taking a break from online forums!!I'm 11 1/2 weeks post-op and seeing improvement weekly. That's okay, as I know it's normal for progress to slow after awhile. I find myself doing things I couldn't do as easily or with as little pain the week before, so success is happening in small increments.

I have NOT started walking very far yet because my PT and surgeon said to do everything in my power to keep the inflammation down these next 2-3 wks. I finished my anti-inflammatory yesterday, and we all want to see if the knee completely rebels. I'm trying to be positive.

Speaking of inflammation.....
The jury may finally be in! I saw my Rheumatologist for a checkup and to go over my TKR recovery----especially the unusually severe swelling and resultant fracture blisters post-op. I also mentioned the need for the Arthrotec (anti-inflammatory) and its miracle effect on my stiffness, pain levels, and range of motion. Then I showed her another spot on my hip that has had her questioning my condition for a few yrs now.

Her verdict: Psoriatic Arthritis (with an 70-80% confidence level). The blood work still can't prove it, but the spot on my hip was large this time and definitely looks like psoriasis. The spots come and go, are sometimes large and sometimes small, but they've become more common in the last 2-3 yrs. The dermatologist keeps blowing me off because I never have a large spot, or it's not in the "common areas" when I get in to see him, but the Rheumatologist said point blank, with wide eyes, "THAT's what we call psoriasis!!!"

Anyway---she can't explain everything because PsA is a tough diagnosis without the obvious symptoms or blood work confirmation. Blood work rarely confirms PsA though, so she's going off of this massive amount of circumstantial evidence piling up starting in 2011 ---especially the major inflammatory reaction to my TKR procedure. I've never WANTED this diagnosis, but even if we just leave it at "Undifferentiated Inflammatory Arthritis," I finally feel more validated for not being a normal TKR recovery patient and not EVER having a fast recovery from ANY of my 12 total joint surgeries.

I don't talk about this with anyone other than my husband because it's too hard to explain. I am curious if there have been others here with autoimmune diseases or other inflammatory conditions. I'd love to hear if others had weird recovery complications.

 

[luvcats]

Sometimes even a bad diagnosis is a relief, because at least then you have something to work from, or towards. Parameters, advice, and the ability to find other people with similar issues.

I have a lot of food sensitivities and like arthritis flares, it's a moving target. What did you eat? When did you eat it? Different foods have a different response time. Allergy testing works best when you've recently been exposed. The blood test for celiac is a joke, with much too high a percentage of false negatives.

I also have hypothyroid and I really relate to getting blown off because "it's not the common response". I was in my 40s before I finally got properly diagnosed, and it had almost certainly been a problem since my mid 20s, if not longer. It's such a struggle when you have something that refuses to conform to a textbook presentation.

I'm so glad you now have something to work with, and that you're finally starting to see healing and improvements.