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TKR 4 Weeks, Min exercise = severe pain

5 month update (Summary - recommend minimum 6 months between 2 TKA's, beware Lyrica)
I've been taking 75 mg x2/day Lyrica for about a month now, and I have been slowwwly improving, while trying to balance the considerable negative consequences of the med. Even at the relatively low dose of 150 mg/d, I was turned into a zombie, and felt exhausted and depressed.

I'm a bit surprised that no one, and especially my OS never considered that I might have nerve damage. To reiterate, I cried to my OS at 2, 6 and 10 weeks, and only at my 16 week check did he prescribe Lyrica, almost as an afterthought. Such nerve damage is obviously rare, but I'm not sure why, after they really cut your leg off at the knee...

The consequence is that my knee was not responsive to physio, and my leg is now bent at about 20 degrees. I am about 100 or 110 bend, so am less worried about that.

I saw another OS a week ago, and he suggested that staggering my 2 surgeries only 3.5 months apart could be a factor. I have since learned that his patients wait a minimum of 6 months. My surgeon never mentioned such a risk.

I am now in the process of getting an extension dynasplint, to try and dig myself out of this hole. I'm not convinced I need it, but I see little downside, other than $600 CDN for the 1rst month rental and $400/mo thereafter; outrageous cost but worth every penny if I can steal 10 degrees.

One last thing - I tried to get off Lyrica a couple weeks ago, and the consequences were severe; shocking for such a short time on it. As well, yesterday I missed my morning dose, and by nighttime I was depressed and felt like I have mental illness. I know you have to taper slowly, and even read about people who can only tolerate tapering 10%/month. I am currently taking about 120 mg/d, and plan to continue tapering slowly. It can be a valuable med, but beware!
 
So sorry you are having withdrawal symptoms! Yes, we all react differently to medication. For some, a very slow reduction is required.

Here are some suggestions:

You can do one of two things to begin reducing the amount of drug you are taking:

1. Begin spreading out the times when you take the drug. If you are currently taking it every 4 hours, for a couple of days make it every 5 hours, then 6 for a few days and so forth until you reduce to one pill a day (usually at bedtime, cuz that's when we seem to need the pain relief most). Then at that point, you can start taking half a pill for a while and then no pill. At that point (no pill), you would take them only periodically when you have pain that over-the-counter medication won't take care of.

2. You can stay on the same schedule (like every 4 hours) and cut back on the amount of the narcotic with each dose. That can be done by asking your doctor for a lower-strength medicine or by cutting pills in half. Only reduce the amount by 1/2 pill at a time if you are staying on the same schedule - not a whole pill. Then when you get to the point that you're taking a half pill at each dose time (that's about as small a dose as you can get), start spreading out the time between doses. This approach works if you need the pain medicine during the day for PT appointments or other activity where over-the-counter meds won't work.

As you're cutting back, expect that you may have to use NSAIDS to fill in the gaps for pain.... Aleve (Naproxen), Advil (Ibuprofen), Motrin or try Tylenol (Paracetamol).

Just be sure you don't try to cut back too fast. You'll feel it if you do and will need to make adjustments accordingly to slow the taper. The whole process can take several weeks, so be patient and make sure you are stable for a day or so at each level before you make another reduction.

Or....you can contact your doctor and ask what schedule THEY prefer you do. But I believe a person will do just as well taking care of this yourself. Only YOU know how you feel at any given time. You want to cut back just enough so the over-the-counter meds work and not so much that you get those flu-like symptoms or have pain.
 
@TKA2023Feb8, I had never heard of Lyrica but looked it up and it's Pregabalin, you must slowly tapper off this drug as you can get horrendous side effects. Tapering slowly as you're doing is the way to go.
@Jaycey's advice sounds very good. Best wishes
 
I thought I would give a 9 Month Update, as I am doing so poorly, wondering if any one took 2 years to heal.

My first knee done a year ago has healed great (but is not rigorously tested).

I haven't taken a single med since Aug.1, which was a success, but my 2nd knee overall is closer to a disaster.
I only started walking a bit in August at 6 months. I can now walk a couple miles, but still use a cane, as I still easily swell up and am in pain. I will walk short distances, Costco for example w/o a cane.
I can only bend to about 100 degrees, and am way off straight at close to 20 degrees. But I'm always at least a bit swollen, so measurements are only so accurate.
As I have encountered since surgery, if I try a simple set of 10 bends (to now approx 110-115 degrees), my knee is swollen and I am in recovery mode for 3 days. No PT or surgeon can really understand that. As always, I strangely have zero pain doing the exercise, but have come to know that the pain and swelling come later in the day and is worse next day, so it's all trial and error with no immediate feedback.
I used a "dynasplint" ($650 CDN for 1rst month, then $450/mo) for straightening for a couple months, but my knee would not tolerate it.
I can bike for about 20 minutes on flat ground. I am swollen and although it's manageable, I don't seem to be able to go longer than I did 2 months ago.

If I do nothing, I am not in much pain, but that doesn't ever happen for more than a day, as I'm I keep beating my head against the wall trying to get better.

I think I am improving, but the glacial pace seems to have slowed yet again.
At this point, I think I am approaching 50/50 that I sadly will be worse than before surgery.

The other possibility is that I just take a full 2 years to recover.

I am crushed that I may not ski again; my #1 goal. Not sure how comfortable I would feel skiing (i.e. falling) and not be able to bend past 100 degrees.

I had high expectations: the #1 cause/source of the data indicating less than 80% of TKA patients are happy.
 
I am so sorry that your second knee is turning out to be slower healing than your first. Since it is the second to be done and it had to carry the load while your first knee healed, it's possible that it had more damage inside that had to be repaired. This would slow down your complete healing. I wasn't totally healed at 7 months either and most aren't. Hopefully, your knee will continue to improve, even though it's slowly. The final outcome is what to look forward to and that might take 2 years. That has been true for some of our members. Please try to be patient. Even a normal knee takes at least a year to heal and you're only a little over halfway there.
 
After a difficult first year I had a lot of improvement in my second year, as my whole leg continued to relax and heal.
 
This is an important update. I was doing so poorly, so desperate that I had to try a small dose (50 mg) of pregabablin (Lyrica) again, even though I had weaned myself off the terrible (side effects and withdrawal) drug by August 1.

I was doing ok in August/Sept, making small progress, but recently was wondering if I was getting worse. Similar to the miraculous effects I had when I first took it in June, I instantly feel way better and pain is drastically reduced and I have gone for 2 mile walks with no cane for 3 days in a row with minimum repercussions.

I plan to experiment and take the absolute minimum, and maybe 50 mg/day is enough. In June I started by taking 75 twice a day, so this is 1/3 and I hope I can tolerate the downside, but I can't say enough about how effective this drug can be.

I always wonder how I am one of the only people with such nerve damage and pain after they cut your leg in half, so I gotta believe more people could benefit from taking it if they have trouble; at least see what it can do for you.
 
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TKA2023Feb8 said:
I plan to experiment and take the absolute minimum, and maybe 50 mg/day is enough. In June I started by taking 75 twice a day, so this is 1/3 and I hope I can tolerate the downside, but I can't say enough about how effective this drug can be.
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Contact your primary health provider. Experimenting with your prescription drugs is not advised. Your health is important.
 
thanks for your concern, but after 9 months of struggling and experimenting with physio and multiple meds, I am adequately experienced, equipped and educated.
 
TKA2023Feb8 said:
thanks for your concern, but after 9 months of struggling and experimenting with physio and multiple meds, I am adequately experienced, equipped and educated.
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I really hope this is a turning point for you. I’m sorry it’s been such a rough ride.
 
So awful to hear what you are going thru! I'm 8 weeks postop and am doing okay, tho bending is still a challenge. But I'll never forget how depressing and frustrating it was when the pain and swelling seemed to never abate. I cannot imagine it going on as long as it has for you!

Yesterday I read thru a thread of someone who has also been going thru what you are describing - her name is Cinders2023. She talks about the different things she's tried, but unfortunately it sounds like she hasn't yet come thru to the other side. If nothing else, maybe just knowing you are not alone, might help? I hope you find relief soon!
 
Thanks everyone.

I'm almost 11 months now, still doing poorly. Pregabalin has helped, but not much these days. I have been cutting down again; why be on it if it's not performing? I went through this same scenario in June/July.

I saw my OS two weeks ago, who referred me to a special clinic in Calgary "Kinesis", with nerve doctors. I called yesterday and was crushed to find out it's an 8-9 month wait. I'm on their waiting list, but am sceptical that it can help.

I am nowhere near as good as I was pre surgery. I do think I will still improve, but it's now looking >50% probability that I will never be as good; what a blow.
I always knew I was better than 95% of TKA patients going into it, and it is sure looking like a bad call.
 
TKA2023Feb8 said:
I am nowhere near as good as I was pre surgery. I do think I will still improve, but it's now looking >50% probability that I will never be as good; what a blow.
I always knew I was better than 95% of TKA patients going into it, and it is sure looking like a bad call.
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I can relate to all of this. It will be 7 years for me in March, and while my general outcome has been a disappointment, I did have a lot of improvement in my second year, compared with my first year, so hopefully you will see the same.

However, I’m nowhere as good as I was before this surgery and 3 second opinions over the years have not found anything to fix. At this point I’m managing ok and glad it’s not any worse.
 
****June 2024 update@16 month post op****
In Jan 2024 I saw a nerve specialist, who said I should try an ablation, but suggested to wait 18 months post op (Aug. 2024), as nerves can take 18-24 months to recover.

The process is to first do 2 nerve blocks with lidocaine, to see if it helps. If it kills pain for 8-12 hours, then you are an ablation candidate. They want two positive tests before ablation.

In May 2024 at 15 months post op, it was still looking grim. I was growing impatient, so decided to at least try the nerve block.

On May 2, I did it, and to my surprise, they gave me a concoction of lidocaine as well as cortisone. They targeted 4 main nerves on the 4 quadrants of my knee. I walked out of the clinic 80-90% pain free.
I woke in the morning and it seemed like the pain was back, but at least I had a glimmer of hope that an ablation might help.
As the week and weeks went on, my pain gradually diminished, and 6 weeks later my pain is still almost all gone. I still feel a bit of nerve pain lower lateral where it was always worst, but it is a bloody miracle. For the record, I had a cortisone injection in my knee cavity in Nov. 2023 and it did nothing.

I had booked my 2nd nerve block proactively for this Friday, but I may cancel it and wait for the pain to return. I could do it and then go straight to an ablation, but I could actually live like this, so I am fine waiting. I assume the pain will return in 3 months(?), similar to results I got from cortisone pre surgery.

I think very few people could be in such rough shape after 15 months and have such a remarkable recovery. I thank God I didn't wait until Aug. 2024 to do the nerve block, and as a result have salvaged my summer :)

Not once in my research about nerve pain and pregabalin did I ever read about a nerve targeted cortisone injection.

I reiterate how bad pregabalin was for me, but in retrospect it had great value in proving to me and my surgeon and nerve specialist that I did indeed have nerve damage.

Best of luck to those that are struggling, but here's a pretty good longgggg term success story.
 
Great update!!!!
I'm guessing it was the lidocaine-cortisone combo doing it (the immediate response to lidocaine is spot on!!! Yayyyy!).
My guess is it basically blocked an overactive pain response, as we can get with chronic pain, allowing the cortisone to do its work)
 
TKA2023Feb8 said:
gradually diminished, and 6 weeks later my pain is still almost all gone. I still feel a bit of nerve pain lower lateral where it was always worst, but it is a bloody miracle
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So pleased for you. It just goes to show how important it is to keep looking for answers and not giving up.
Knees are so complicated and there are so many possibilities for causing issues. Sometimes we have to be a bit of detective and also keep pushing.
 
I'm so glad that you have given us an update, and a good update at that. As you have found out, we have to be our own best advocate. I'm thrilled for you that the combo is working and your pain free. We like reading these types of stories.
 
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