Chronic,debilitating pain after knee replacement

Posted by canls @canls, Apr 21, 2019

My husband had knee replacement surgery six months ago. The knee is still swollen, hard, and very warm. He still has chronic pain. He's at a constant 3-4 level most of the time, with episodes that shoot the pain up to 9 -10 range every day — every damned day! — that bring him to tears. And this is a man who's had broken bones, suffered concussion, and had a total hip replacement and was back on the golf course in six weeks. He's had every blood test you can think of to rule out infection. He's been X-rayed and scanned to rule out anything else. And we're told everything with the new joint looks fine, so keep doing what you're doing and it will get better. He does PT. He elevates, He ices. He does deep breathing. We've been to a pain management specialist who's fiddled with his meds and done laser therapy. And nothing works to bring the pain down. it's not getting better. Any ideas or recommendations?

@ethanmcconkey

Hi @lindalockie that must be awful having so much pain and not being able to take most painkillers.

I wanted to introduce you to @debbraw @ellerbracke @johnbishop @babette @sraley1 and @contentandwell as they all have had TKR's and may be able to offer you their experience with pain.

Back to you @lindalockie what have your doctors or physical therapists said about your pain?

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Hi Ethan my pain could be due to tourniquet used during surgery or problems relating to Spinal Block used as anaesthesia or spinal problems from before surgery but I have never experienced pain so debilitating Thank you for your support

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@lindalockie

Hi I am a public patient in Australia Dont see my orthopaedic surgeon until May 23rd Not a lot of support Rehab to be done at home by yourself!! Had Spinal block for surgery and a tourniquet was used around the thigh apparently for blood free surgery I had lots of bruising around thigh
Can only take Paracetemol as allergic to all opioid medications but am trying very hard to bend knee and not doing too badly My biggest problem is relentless burning pain down my thigh calf and foot Pregabalin (prescibed by my GP DR) helps a little bit but make me very groggy I get results of a CT tomorrow so pain could be also due to Spinal block or I think the pain may be attributed to past spinal problems so goodness knows what happens to you during surgery
Been told it may take months to resolve but I need to be able to drive very soon as my husband is having a hip replacement on 8th May so will have to stop the pregabalin or will not be able to drive Just wondered if others had experienced this type of pain after TKR Thank you

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Hi @lindalockie, sorry to hear about the pain. I wasn't aware of the use of a tourniquet for knee surgery. I found an article that may shed some light on the why the pain…

Effects of Tourniquet Use on Quadriceps Function and Pain in Total Knee Arthroplasty
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4258487/

Why I stopped using a tourniquet for total knee replacement
https://www.yourorthomd.com/orthopedic-knowledge/why-i-stopped-using-a-tourniquet-for-total-knee-replacement

Have you thought about alternative methods for helping with the pain? There is a great discussion on Connect that may provide some help for your pain here:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@johnbishop

Hi @lindalockie, sorry to hear about the pain. I wasn't aware of the use of a tourniquet for knee surgery. I found an article that may shed some light on the why the pain…

Effects of Tourniquet Use on Quadriceps Function and Pain in Total Knee Arthroplasty
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4258487/

Why I stopped using a tourniquet for total knee replacement
https://www.yourorthomd.com/orthopedic-knowledge/why-i-stopped-using-a-tourniquet-for-total-knee-replacement

Have you thought about alternative methods for helping with the pain? There is a great discussion on Connect that may provide some help for your pain here:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Hi John thank you very much for the information I will investigate and hopefully get some answers THANK YOU

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John – Thank you for posting this. At 9 months post-op I continue to have so much soreness in my quadricep that going up and down stairs is very painful. Can't believe my surgeon didn't mention this possibility to me! I have found riding a stationary bike to be somewhat helpful with my quads.

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@babette

John – Thank you for posting this. At 9 months post-op I continue to have so much soreness in my quadricep that going up and down stairs is very painful. Can't believe my surgeon didn't mention this possibility to me! I have found riding a stationary bike to be somewhat helpful with my quads.

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Hi @babette, I'm 20 days post op and am able to get around mostly with a cane. I do use the walker at night for bathroom trips. I have a recumbent bike / elliptical combo and can just barely use the bike mode now with the pedals extended as far as they go. I can tell it's much better for exercising the range of motion than the elliptical. I can only do 5 to 10 minutes at a time now but I think once I get a little more range of motion it will be better.

Going up stairs didn't used to be a problem with a crutch or cane but lately I get a sharp pain once in awhile at the joint below the left hip which is opposite of the knee replacement. I'm hoping it's just a strained muscle or ligament. I do take the stairs pretty slow though. ☺ I think what has really helped me was that I had been trying to get a knee replacement for a year due to bone on bone but because I described my pain level at 4 to 5 they wanted to try PT (didn't work) and steroid shot (worked until I knelled down on concrete a few weeks after the shot). So I worked on pre-knee replacement exercises and PT for around 3+ months daily until I was able to get the knee replacement scheduled.

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Hi John I didnt even know I was having a tourniquet during surgery but wished I had known and been armed with the knowledge of the positives and negatives of this practice Will print some information and show my GP tomorrow THANK YOU

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@lindalockie

Hi I am a public patient in Australia Dont see my orthopaedic surgeon until May 23rd Not a lot of support Rehab to be done at home by yourself!! Had Spinal block for surgery and a tourniquet was used around the thigh apparently for blood free surgery I had lots of bruising around thigh
Can only take Paracetemol as allergic to all opioid medications but am trying very hard to bend knee and not doing too badly My biggest problem is relentless burning pain down my thigh calf and foot Pregabalin (prescibed by my GP DR) helps a little bit but make me very groggy I get results of a CT tomorrow so pain could be also due to Spinal block or I think the pain may be attributed to past spinal problems so goodness knows what happens to you during surgery
Been told it may take months to resolve but I need to be able to drive very soon as my husband is having a hip replacement on 8th May so will have to stop the pregabalin or will not be able to drive Just wondered if others had experienced this type of pain after TKR Thank you

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Hi @lindalockie – I've heard others talk about that burning sensation of pain post-op from TKR. Sometimes I think it relates to scar tissue. Here are a couple of conversations that may be helpful:
https://connect.mayoclinic.org/discussion/burning-after-total-knee-replacement/
https://connect.mayoclinic.org/discussion/unable-to-sleep-after-tkr/
https://connect.mayoclinic.org/discussion/scar-tissue-after-knee-replacement/?orderby=DESC#chv4-comment-stream-header
I totally understand your desire/need to be back able to drive. Is your pain fairly constant or does it come and go?

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@johnbishop

Hi @babette, I'm 20 days post op and am able to get around mostly with a cane. I do use the walker at night for bathroom trips. I have a recumbent bike / elliptical combo and can just barely use the bike mode now with the pedals extended as far as they go. I can tell it's much better for exercising the range of motion than the elliptical. I can only do 5 to 10 minutes at a time now but I think once I get a little more range of motion it will be better.

Going up stairs didn't used to be a problem with a crutch or cane but lately I get a sharp pain once in awhile at the joint below the left hip which is opposite of the knee replacement. I'm hoping it's just a strained muscle or ligament. I do take the stairs pretty slow though. ☺ I think what has really helped me was that I had been trying to get a knee replacement for a year due to bone on bone but because I described my pain level at 4 to 5 they wanted to try PT (didn't work) and steroid shot (worked until I knelled down on concrete a few weeks after the shot). So I worked on pre-knee replacement exercises and PT for around 3+ months daily until I was able to get the knee replacement scheduled.

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John @johnbishop – I think your "pre-hab" was a Godsend – just like mine especially on my 1st TKR. Sounds like you are doing great. Just FYI, my surgeon told me that pain in the "other" leg is not uncommon since that opposite knee & hip are having to do all of the heavy lifting so to speak. I bet when you get a little further into recovery, that hip pain will ease off.

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@debbraw

John @johnbishop – I think your "pre-hab" was a Godsend – just like mine especially on my 1st TKR. Sounds like you are doing great. Just FYI, my surgeon told me that pain in the "other" leg is not uncommon since that opposite knee & hip are having to do all of the heavy lifting so to speak. I bet when you get a little further into recovery, that hip pain will ease off.

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Debbra @debbraw — I hope the hip pain goes away on it's own ☺ It hasn't been too bad going up the stairs today. I'm just happy I'm able to sleep OK at night with no knee pain. After talking with the nurse on Tuesday when I took a sick day off to elevate and ice more, I made a plan to do it at least 3 to 5 times a day for 20+ minutes for the rest of the week…so far, so good ☺ Even got my zippered compression socks on so am hoping it will help with the swelling.

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I had total knee replacement in my right knee 19 months ago and I have not had more than an hour of relief when taking hydrocodone. I've been on hydrocodone 7.5/325 for the last 12 months three times a day. They do not work very well anymore and my primary doctor told me to take acetaminophen between doses. That hasn't helped either. I asked my primary physician for a referral to another surgeon for a second opinion. It's been three weeks and the doctors office says that the other doctor is reviewing my records to determine if she will take my case. Is it common for a doctor to not want to take another doctors case because of respect for each other? I don't know what to do. I'm at the point where I would rather just lay down and not wake up. This pain has affected my life to the point where most of my friends and family don't even bother with me anymore. I've said so many times that I can't go to a function because I can't stand that long or I can't walk. they have stopped asking me to go. I am at wits end and very very Unhappy. My surgeon tells me that it's possibly nerve damage and it will go away. But the pain now is traveling down to my ankles and tingles. Any ideas?

I tried to figure out how to post my questions, but could not. I know I'm putting this in the wrong spot, but didn't know what else to do.

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@sandy9

I had total knee replacement in my right knee 19 months ago and I have not had more than an hour of relief when taking hydrocodone. I've been on hydrocodone 7.5/325 for the last 12 months three times a day. They do not work very well anymore and my primary doctor told me to take acetaminophen between doses. That hasn't helped either. I asked my primary physician for a referral to another surgeon for a second opinion. It's been three weeks and the doctors office says that the other doctor is reviewing my records to determine if she will take my case. Is it common for a doctor to not want to take another doctors case because of respect for each other? I don't know what to do. I'm at the point where I would rather just lay down and not wake up. This pain has affected my life to the point where most of my friends and family don't even bother with me anymore. I've said so many times that I can't go to a function because I can't stand that long or I can't walk. they have stopped asking me to go. I am at wits end and very very Unhappy. My surgeon tells me that it's possibly nerve damage and it will go away. But the pain now is traveling down to my ankles and tingles. Any ideas?

I tried to figure out how to post my questions, but could not. I know I'm putting this in the wrong spot, but didn't know what else to do.

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@sandy9 I don't know what your insurance is, and if a referral is required, but sometimes you don't need a referral. Also, I think it is best when you go for a consult with a different doctor to go to one out of the area where the original doctor is. They tend to stick together if they are in the same area. Your pain sounds unreasonable for this amount of time. I hope you can find a good doctor who will take your case.
JK

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@sandy9 I think you came to exactly the right place with your concerns!

I'm so very sorry for your ongoing pain. I am 9 months out and still have terrible pain and, like you, standing or walking for any length of time is impossible. If I want to go to a museum, my husband has to push me in a wheelchair. Not exactly my desired outcome: I told my surgeon I wanted to be skiing in 4 months and he said, "you got it!" Needless to say, if I'm to have the other (R) knee done (don't know how that's possible all things considered) I'm seeing a different surgeon. I saw a well known surgeon in Boston, but that was a consult about how/when/if to do the L knee. I learned that most surgeons will not examine or comment on your original surgery knee until you are one year out … and you're beyond that!

There are 2 specific things that strike me about your pain: your PCP's advice to take acetaminophen between does of Vicodin seems questionable because Vicodin also has acetaminophen and too much of that can be very toxic. Have you considered seeing a pain specialist?
Second, I'm concerned when you say there are times you want to lie down and not ever get up. That thought has flashed through my mind too. All this is very isolating and depressing. If you have this feeling often, please reach out for help. I'm glad you started here.

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Hi @sandy9 – Welcome to Connect. Glad you posted here. I am so sorry about the level of pain you are having. I can just feel your frustration and despair. I agree with JK @contentandwell – the kind of pain you describe does not sound normal for a knee replacement.

I had a TKR on January 29 and quit taking oxycodone after 5 weeks. I wanted my doctor to prescribe Tramadol as a kind of transition, and they did it once, but said that if I needed pain meds after 8 weeks, they would refer me to the pain clinic. Actually, I am surprised your doctor has allowed you to continue hydrocodone for such a long period of time. If you don't mind sharing, has your doctor discussed a referral to a pain clinic? Have you tried any alternative therapies like acupuncture or myofascial release?

Most of all, it sounds as if you need someone to determine what is causing the pain – is it nerve damage, has scar tissue built up, are you having a reaction to the implant itself? I have heard that many doctors are reluctant to take a referral from another surgeon within the first year, but since you are 19 months out, I think you should be fine on that. I hope you can get another assessment and get some relief from this pain.

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Had TKR in right knee 7/17. The surgery worked, but my knee remained swollen so that bending it was very uncomfortable. I also have extreme sensitivity of my scar, and on a few occasions when I've bumped it, it caused excruciating pain. Not able to kneel on this knee at all because of the pain it causes. I was told this sometimes happens after aTKR, and that it is normal and may never improve.

A few weeks ago I started to feel occasional "popping" in this knee and it bent backwards a few times, so that I had to grab something to keep from falling. Then I started to experience very bad swelling of the knee and there was burning in the back of my right leg immediately above where my knee bends. It lessened and was replaced by even worse burning pain on the inside of the leg at my knee with occasional stabbing pain. The pain has spread to the outside of my leg at the knee and my kneecap. It is so bad that I am unable to sleep.

I tried taking Tramadol for the pain at night with no relief. Ibuprofen did not help, so the doctor prescribed Mobic 7.5mg twice a day. After four days, it has not yet worked.
Before this happened I experienced some sciatica at, above and below my knee, but that was resolved with a dose of steroids.

Has anyone experienced this? If so, were you able to resolve the pain? How? Also, any idea what is causing this?

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@rosiegirl

Had TKR in right knee 7/17. The surgery worked, but my knee remained swollen so that bending it was very uncomfortable. I also have extreme sensitivity of my scar, and on a few occasions when I've bumped it, it caused excruciating pain. Not able to kneel on this knee at all because of the pain it causes. I was told this sometimes happens after aTKR, and that it is normal and may never improve.

A few weeks ago I started to feel occasional "popping" in this knee and it bent backwards a few times, so that I had to grab something to keep from falling. Then I started to experience very bad swelling of the knee and there was burning in the back of my right leg immediately above where my knee bends. It lessened and was replaced by even worse burning pain on the inside of the leg at my knee with occasional stabbing pain. The pain has spread to the outside of my leg at the knee and my kneecap. It is so bad that I am unable to sleep.

I tried taking Tramadol for the pain at night with no relief. Ibuprofen did not help, so the doctor prescribed Mobic 7.5mg twice a day. After four days, it has not yet worked.
Before this happened I experienced some sciatica at, above and below my knee, but that was resolved with a dose of steroids.

Has anyone experienced this? If so, were you able to resolve the pain? How? Also, any idea what is causing this?

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Hi @rosiegirl and welcome to Connect. You'll notice that I moved your question about having pain 2 years post total knee replacement to this existing discussion in the Joints Replacement group. Click VIEW & REPLY to read through the past posts. I think you'll find them useful.
You'll meet @ellerbracke @babette @sandy9 and others who also experienced extended periods of pain. Fellow members @debbraw and @johnbishop share really useful resources and link to related discussions.

Be sure to browse through all the topics of the Joints Replacement group https://connect.mayoclinic.org/group/joint-replacements/

Rosiegirl, did you do physical therapy after your TKR? Are you able to water sports? @contentandwell swears by water exercise.

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