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?

The most common causes of pain after knee replacement is Loosening of the implant. You can reduce pain by doing your postoperative exercises.

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I am so sorry to hear your husband is dealing with this pain. Believe me, I can relate. I am going on 6 months bilateral TKR and I've been in constant pain with very limited mobility. My gait is painful to watch and I can't stand for more than 10 minutes. My last visit with surgeon in May did not give me any answers to my pain, which is almost always around 4-5 reaching 8-9 in the afternoon and evening. He said the xrays look good, blood work does not indicate infection. I told him maybe the standing straight in front of an xray looks good, it's the movement of the knees when walking that feels very "off". He refilled pain meds (which I would rather not be taking) and said see ya Labor Day if it's not better. I have felt since April that this is not right for a recovery. I am 62, was very active, riding my bike 20 miles, enjoying the Art Festivals, taking care and chasing after my grandchildren. I've been very healthy, weight has always been good and I did pre-hab exercises and was diligent with my PT rehab at home. I was not happy with my surgeon so I did find another ortho surgeon to give me a 2nd opinion. He has found the implants to be too big for me. I am 5'3 120lbs small boned. He is suggesting revisions. I am going for a 3rd opinion before I make any decisions. Maybe your husband should also seek a 2nd opinion and focus on the size.

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@canis I'd recommend seeking out a pain specialist. So sorry your husband is going through this – I'm having a long "recovery" too.

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I feel for everyone who is continuing to experience pain after their replacements. I am 1 1/2 yrs out from a partial knee replacement and still have daily pain. My surgeon cannot find any reason as to why I'm still experiencing pain. All x-rays look normal. I was in Physical Therapy for over almost a 1 1/2 years – starting about 6 months prior to my surgery. At about the 9 month mark my primary care provider gave me a referral to a pain management specialist (at this point I was diagnosed with stomach ulcers and was unable to continue on the NSAIDS that kept the pain bearable) since no other orthopedic surgeons would see me as a 2nd opinion until the year mark. The pain management doctor ordered a spine MRI to see if the pain could be referred pain from a spine issue – that was normal. He also ordered a bone scan – also normal. At this point we were at around the year mark. I saw my original surgeon for my year follow up, once again he couldn't find any reason for the pain and said the only thing he could think of to possibly help would be to convert to a total knee, but he couldn't offer any guarantees. Definitely not what I wanted to hear. He was very proud of me for my weight loss since surgery (around 40 pounds) – of course, my weight loss was all related to the stomach issues I had been experiencing because of the damage done by the NSAIDS he prescribed. Since it had been a year, I had a second opinion with a surgeon from University of Wisconsin – about 2 hours away – to see if they could find any reason for the pain. That surgeon ordered a MRI, which did show some arthritis on the other components of the knee, but not enough to warrant converting to a total nor enough to explain the pain. Right now, I'm working with my pain management doctor to try to get a nerve block and/or ablation covered by my insurance company to see if that will bring me some relief. I'm also recovering from gastric bypass surgery due to the stomach damage from the NSAIDS and am struggling with my weight – I went from being morbidly obese 2 years ago to borderline underweight and significantly malnourished. Knee surgery is not an option at this point in time. I'm 43 years old – was once very active walking at least 3 miles a day. Now I go to work, struggle to walk from my car to my desk, come home and sit in my recliner watching tv. I'm also battling depression. There are days I wish I never would have had the surgery – although the rational me knows that I was in significant pain prior as well. I thank God for a great primary care provider who has prescribed Tramadol to assist with the pain (although I would rather not take it, and try not to as much as possible, but there are some days I just can't bear it) and Ambien to help me sleep at night. Without those 2 medications I'm not sure I would be making it as "well" as I am.

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@kibe75

I feel for everyone who is continuing to experience pain after their replacements. I am 1 1/2 yrs out from a partial knee replacement and still have daily pain. My surgeon cannot find any reason as to why I'm still experiencing pain. All x-rays look normal. I was in Physical Therapy for over almost a 1 1/2 years – starting about 6 months prior to my surgery. At about the 9 month mark my primary care provider gave me a referral to a pain management specialist (at this point I was diagnosed with stomach ulcers and was unable to continue on the NSAIDS that kept the pain bearable) since no other orthopedic surgeons would see me as a 2nd opinion until the year mark. The pain management doctor ordered a spine MRI to see if the pain could be referred pain from a spine issue – that was normal. He also ordered a bone scan – also normal. At this point we were at around the year mark. I saw my original surgeon for my year follow up, once again he couldn't find any reason for the pain and said the only thing he could think of to possibly help would be to convert to a total knee, but he couldn't offer any guarantees. Definitely not what I wanted to hear. He was very proud of me for my weight loss since surgery (around 40 pounds) – of course, my weight loss was all related to the stomach issues I had been experiencing because of the damage done by the NSAIDS he prescribed. Since it had been a year, I had a second opinion with a surgeon from University of Wisconsin – about 2 hours away – to see if they could find any reason for the pain. That surgeon ordered a MRI, which did show some arthritis on the other components of the knee, but not enough to warrant converting to a total nor enough to explain the pain. Right now, I'm working with my pain management doctor to try to get a nerve block and/or ablation covered by my insurance company to see if that will bring me some relief. I'm also recovering from gastric bypass surgery due to the stomach damage from the NSAIDS and am struggling with my weight – I went from being morbidly obese 2 years ago to borderline underweight and significantly malnourished. Knee surgery is not an option at this point in time. I'm 43 years old – was once very active walking at least 3 miles a day. Now I go to work, struggle to walk from my car to my desk, come home and sit in my recliner watching tv. I'm also battling depression. There are days I wish I never would have had the surgery – although the rational me knows that I was in significant pain prior as well. I thank God for a great primary care provider who has prescribed Tramadol to assist with the pain (although I would rather not take it, and try not to as much as possible, but there are some days I just can't bear it) and Ambien to help me sleep at night. Without those 2 medications I'm not sure I would be making it as "well" as I am.

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@kibe75 – I am so sorry about the level of pain you are having so long after your PKR. I'm 68 years old and had a TKR in January. After 3 weeks, I had a terrible reaction to the Celebrex I was prescribed. They took me off all pain meds for a few days then let me start on Tramadol. I can really relate to how grateful you are to have that! Thankfully, my TKR recovered well and I have no pain from it. However, I'm scheduled for an endoscopy next week to see if the ulcer has healed in my stomach. (Wish me luck!) Back to you – is the pain you are having now with your knee the same kind of pain that caused you to have the PKR or is it different in nature or intensity? I just feel so bad for you – you are too young to have this kind of debilitating pain.

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@debbraw

@kibe75 – I am so sorry about the level of pain you are having so long after your PKR. I'm 68 years old and had a TKR in January. After 3 weeks, I had a terrible reaction to the Celebrex I was prescribed. They took me off all pain meds for a few days then let me start on Tramadol. I can really relate to how grateful you are to have that! Thankfully, my TKR recovered well and I have no pain from it. However, I'm scheduled for an endoscopy next week to see if the ulcer has healed in my stomach. (Wish me luck!) Back to you – is the pain you are having now with your knee the same kind of pain that caused you to have the PKR or is it different in nature or intensity? I just feel so bad for you – you are too young to have this kind of debilitating pain.

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@debbraw Good luck on your endoscopy!! I hope that your ulcer has healed. I've had 9 of them since last September LOL.

The pain I'm having now is different than prior to surgery – now the pain is sharper and more intense. I've been trying to walk about a 1/2 mile a day just to get some activity in (gotta prevent blood clots post surgery!), but it is hard and hurts to go even that short distance. I'm hopeful my insurance will come through and approve the nerve block so that I can see if that will help the pain so I can try to live a more normal life.

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@kibe75

@debbraw Good luck on your endoscopy!! I hope that your ulcer has healed. I've had 9 of them since last September LOL.

The pain I'm having now is different than prior to surgery – now the pain is sharper and more intense. I've been trying to walk about a 1/2 mile a day just to get some activity in (gotta prevent blood clots post surgery!), but it is hard and hurts to go even that short distance. I'm hopeful my insurance will come through and approve the nerve block so that I can see if that will help the pain so I can try to live a more normal life.

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@kibe75 – Thanks for your kind words. I'm hoping for the best and cannot imaging having NINE ulcers. Keep your good thoughts coming. I'm glad you are walking some and hope the insurance comes through for the nerve block. Just FYI, here is an article I thought you might find interesting. Wishing you the best of luck. Will you keep us posted about the nerve block issue?
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-offering-new-mri-safe-pain-blocking-device/

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@debbraw

@kibe75 – Thanks for your kind words. I'm hoping for the best and cannot imaging having NINE ulcers. Keep your good thoughts coming. I'm glad you are walking some and hope the insurance comes through for the nerve block. Just FYI, here is an article I thought you might find interesting. Wishing you the best of luck. Will you keep us posted about the nerve block issue?
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-offering-new-mri-safe-pain-blocking-device/

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@debbraw I will let you know if I get the nerve block and how it works.

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I had knee replacement surgery on November 26, 2019, and cannot endure the 10-level pain during PT to increase range of motion. Oxycodone painkillers do not help. My PT is now suggesting manipulation. What is your husband’s current status?

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@patient1746

I had knee replacement surgery on November 26, 2019, and cannot endure the 10-level pain during PT to increase range of motion. Oxycodone painkillers do not help. My PT is now suggesting manipulation. What is your husband’s current status?

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I'm so very sorry to hear you are going through this and you should not be! You're barely a month out from your surgery.

There is a lot of discussion out there about PT, its efficacy, whether gentle or aggressive is best, etc. When I was recovering from my first knee replacement many months ago and having trouble with PT, I was lucky enough to find bonesmart.org. Here are their guidelines for PT and exercise post TKR:
https://bonesmart.org/forum/threads/post-operative-exercise-–-the-bonesmart-view.25463/
https://bonesmart.org/forum/threads/bonesmart-philosophy-for-sensible-post-op-therapy.37103/
When I had to have my TKR completely redone, I found a surgeon in Boston who is against aggressive PT. He said it should not be painful. You can push to the point of discomfort, but then stop! Pain is your body's way of saying something is wrong. You have a lot of inflammation and tissue trauma from the surgery, aggressive PT just adds more trauma.

I hope you can find a PT who understands and practices gentle PT. I did and it has made all the difference as I recover from my revision.

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@patient1746

I had knee replacement surgery on November 26, 2019, and cannot endure the 10-level pain during PT to increase range of motion. Oxycodone painkillers do not help. My PT is now suggesting manipulation. What is your husband’s current status?

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I’m sorry you are gong through that pain. When I had first TkR in 2018, my pain level was 3-9 for first 6 months or so. Had to stay on stronger meds, and keep getting lectures about possible addiction, but was able to wean off slowly. We don’t get physio after TKR here, so my PT consisted of me following book, and I was told to back off if pain, I still do same ones one year later.I checked out the link from Babette, and most of those exercises I didn’t do, other than bed slides and lunges at slow pace.I used book, did pool walking and recumbent bike.

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I had knee replacement over 10 ears ago and I'm in pain every day all day long because the surgeon did not put the the muscle over the knee cap back I walked around over a year and told them something was wrong and they said nothing was wrong. So they sent me to a sport medicine doctor and it showed in the x-ray that the muscle was hanging there. So back in surgery I went to put the muscle back in place and the pain is worse now because of the nerve damage. Because of that now I have Neoplasm in the right knee. Now my left is bothering me. I don't know what I'm going to do. I'm just looking for some kind of help.

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@canis and others, I haven't read through all the posts here, about half, but one thing I wanted to mention was that in deciding which way to go with my total knee implant, I looked into lawsuits against the companies. They all have them, which makes sense, as there were mistakes made as new implants came into use. I would think the surgeons and companies would inform you if there were a chance that your implant was defective, but you never know. Also, on the issue of size, my surgeon explained after I asked that he had put in a size 3 (Stryker, where the sizes range from 2 on the small side to 8 on the large). I was surprised but it turns out my bones are rather small. I will see him again next week and want to ask more about that. He showed me the x-rays (I was heavily drugged) and said the fit was perfect. So size could be important, and having a new set of x-rays evaluated by a different surgeon could help. Sorry if I'm repeating info others already have provided. Best of luck.

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@saeternes

@canis and others, I haven't read through all the posts here, about half, but one thing I wanted to mention was that in deciding which way to go with my total knee implant, I looked into lawsuits against the companies. They all have them, which makes sense, as there were mistakes made as new implants came into use. I would think the surgeons and companies would inform you if there were a chance that your implant was defective, but you never know. Also, on the issue of size, my surgeon explained after I asked that he had put in a size 3 (Stryker, where the sizes range from 2 on the small side to 8 on the large). I was surprised but it turns out my bones are rather small. I will see him again next week and want to ask more about that. He showed me the x-rays (I was heavily drugged) and said the fit was perfect. So size could be important, and having a new set of x-rays evaluated by a different surgeon could help. Sorry if I'm repeating info others already have provided. Best of luck.

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Anyone else that can relate to size and make difference? This last tkr in 2016 was replaced with Stryker unit.

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@saeternes

@canis and others, I haven't read through all the posts here, about half, but one thing I wanted to mention was that in deciding which way to go with my total knee implant, I looked into lawsuits against the companies. They all have them, which makes sense, as there were mistakes made as new implants came into use. I would think the surgeons and companies would inform you if there were a chance that your implant was defective, but you never know. Also, on the issue of size, my surgeon explained after I asked that he had put in a size 3 (Stryker, where the sizes range from 2 on the small side to 8 on the large). I was surprised but it turns out my bones are rather small. I will see him again next week and want to ask more about that. He showed me the x-rays (I was heavily drugged) and said the fit was perfect. So size could be important, and having a new set of x-rays evaluated by a different surgeon could help. Sorry if I'm repeating info others already have provided. Best of luck.

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@saeternes size is one of the most important things, which is why I opted for a custom made replacement knee, Conformis. I have no regrets at all. I highly recommend Conformis for anyone getting a TKR.
JK

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