Chronic,debilitating pain after knee replacement

Posted by canls @canls, Sun, Apr 21 3:10pm

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?

@colleenyoung

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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Thank you for letting me know you moved my question to the appropriate place.
I did start physical therapy immediately after my knee replacement therapy which lasted four months. It did not reduce my swelling at all, but my knee pain diminished a great deal during that time. Additionally, I returned to swimming 3 to 5 times a week 2 or 3 months after my surgery. I had to stop swimming about 4 months ago because it exacerbated the pain so much.

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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, I would like to add my welcome to Connect along with @colleenyoung and other members. I'm 2 months post op from a total knee replacement for my right knee. I have not had the pain that you have experienced but my ankle and leg are still quite swollen although the knee itself is not as bad. Part of my swelling issue is that I also have lymphedema and need to wear compression socks to help keep the swelling down.

Have you discussed the popping and the knee bent backwards a few times with your doctor? I would want to know if there was a possibility that the knee might have been re-injured. I had some issues sleeping due to some aching in my knee (not real sharp pains) when I got back from the hospital from the knee surgery. What has helped me was a really small fluffy travel pillow that I keep between my knees/legs. Another thing that helped the swelling was to elevate and ice the leg several times a day, keeping the leg at eye level by laying on the couch with a large pillow under the leg.

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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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@rosiegirl I am really sorry to hear of the problems you having with your knee. I was in a lot of pain for about four weeks and around then it started improving and I was great at the six-week mark.
For you to have this much pain still really does not sound right. Have you sought a second opinion? I think I would do that if I had that much pain, preferably one from a really top ortho at an excellent medical center. I have no idea if having sciatica could contribute to your pain or now, that is not a problem I have had.
As @colleenyoung mentioned, I am a huge advocate of water exercise, and also the recumbent bike. When I was talking to my ortho I asked him about the best exercises and coincidentally these are two of the exercises he considers best also. I continue to do both of those but now I also do other exercises in the gym at my health club.
I really hope you find a top doctor to get a second opinion from. You should not have to deal with this much pain for so long.
JK

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@contentandwell

@rosiegirl I am really sorry to hear of the problems you having with your knee. I was in a lot of pain for about four weeks and around then it started improving and I was great at the six-week mark.
For you to have this much pain still really does not sound right. Have you sought a second opinion? I think I would do that if I had that much pain, preferably one from a really top ortho at an excellent medical center. I have no idea if having sciatica could contribute to your pain or now, that is not a problem I have had.
As @colleenyoung mentioned, I am a huge advocate of water exercise, and also the recumbent bike. When I was talking to my ortho I asked him about the best exercises and coincidentally these are two of the exercises he considers best also. I continue to do both of those but now I also do other exercises in the gym at my health club.
I really hope you find a top doctor to get a second opinion from. You should not have to deal with this much pain for so long.
JK

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The surgeon who did the TKN retired only 6 months after my surgery (he was only 60!). I am not happy with the surgeon to whom he referred me, so I am scheduled next week to see a surgeon my family doc recommended. I had been swimming until about 2 or 3 months ago, when it became too painful to do so. Had to stop exercising except for a few core exercises.
Thank you for your response.

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@rosiegirl

The surgeon who did the TKN retired only 6 months after my surgery (he was only 60!). I am not happy with the surgeon to whom he referred me, so I am scheduled next week to see a surgeon my family doc recommended. I had been swimming until about 2 or 3 months ago, when it became too painful to do so. Had to stop exercising except for a few core exercises.
Thank you for your response.

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@rosiegirl I hope the new doctor can help you, but if not do not give up. I have found that sometimes doctors are influenced by personal feelings toward a doctor. I have had that happen a couple of times. Check out the doctor's ratings on things like Vitals and Healthgrades. I never believe the ratings unless there are a substantial number of them though.
JK

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@johnbishop

Hi @rosiegirl, I would like to add my welcome to Connect along with @colleenyoung and other members. I'm 2 months post op from a total knee replacement for my right knee. I have not had the pain that you have experienced but my ankle and leg are still quite swollen although the knee itself is not as bad. Part of my swelling issue is that I also have lymphedema and need to wear compression socks to help keep the swelling down.

Have you discussed the popping and the knee bent backwards a few times with your doctor? I would want to know if there was a possibility that the knee might have been re-injured. I had some issues sleeping due to some aching in my knee (not real sharp pains) when I got back from the hospital from the knee surgery. What has helped me was a really small fluffy travel pillow that I keep between my knees/legs. Another thing that helped the swelling was to elevate and ice the leg several times a day, keeping the leg at eye level by laying on the couch with a large pillow under the leg.

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John, thank you for your response. I've iced the knee, but that made no dofference. I've always found icing swelling hlps, but not this time. The doctor who operated retited not long after my surgery, and when this all started, the surgeon to whom he referred me told me it would go away. Not going back there. I was able to make an appointment next week for a surgeon referred by my family physician. I've always slept with a pillow under my knees or between them while lying on my side because of back issues, so that hasn't provided any relief. The replacement itself was successful, so I am flummoxed at the amount of pain so long after the surgery.
Someone recently reminded me of my extreme sensitivity to nickel. Many knee replacements, although mostly titanium, do contain some nickel. My cousin had the same problem and eventually had to get a new, nickel-free knee. I am really hoping it is not that or anything else that that requires another surgery.

I hope your swelling eventually dissapates.

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@rosiegirl

The surgeon who did the TKN retired only 6 months after my surgery (he was only 60!). I am not happy with the surgeon to whom he referred me, so I am scheduled next week to see a surgeon my family doc recommended. I had been swimming until about 2 or 3 months ago, when it became too painful to do so. Had to stop exercising except for a few core exercises.
Thank you for your response.

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Hi @rosiegirl – I want to add my Welcome to the others. Glad you are here on Connect! It must be awfully discouraging to have the pain/swelling you have had and THEN have your doctor retire. I'm glad you are seeing another surgeon. I've had two TKRs – one in 2017 and the last one earlier this year. My surgeon told me that many people have problems kneeling after surgery. That has been true for me. He also said that many people report that kind of popping or clicking noise. I have not had that. So while I wouldn't necessarily be too concerned about the kneeling or the sound, I would be worried about the bending backwards, the pain and the continued swelling. It sounds as if you are doing all you can do to get to the bottom of the problem. Have you prepared a list of questions for your new doctor? If I were you, I would jot some down – along with some of the things you have told us here like when you had to quit swimming and how the pain has gotten worse and worse (not better and better). If you are anything like me, I have the timeline and questions in my head, but the facts don't necessarily make it out of my mouth when the doctor steps in. Will you let us know how your new doctor visit goes?

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@contentandwell

@rosiegirl I hope the new doctor can help you, but if not do not give up. I have found that sometimes doctors are influenced by personal feelings toward a doctor. I have had that happen a couple of times. Check out the doctor's ratings on things like Vitals and Healthgrades. I never believe the ratings unless there are a substantial number of them though.
JK

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It seems that mznyndoctors really don't listen, which is the problem I had with the doctor referred by my original orthopedist. I agree about the ratings. The surgeon I will be seeing has excellent ratings, and my family physician told me other patients of his were very happy with him. . Additionally he is the team sports doc for local university's teams. Keeping my fingers crossed.

Thank you

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I have experienced the popping since my TKR, but until a few months ago it was not associated with any pain. Something has definitely changed, and I am hoping that this new surgeon will be able to help me. If not, I'll keep searching for a resolution. I already have a script prepared for the new orthopedist. I want to make sure I don't leave anything out.

Thank you.

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@rosiegirl

It seems that mznyndoctors really don't listen, which is the problem I had with the doctor referred by my original orthopedist. I agree about the ratings. The surgeon I will be seeing has excellent ratings, and my family physician told me other patients of his were very happy with him. . Additionally he is the team sports doc for local university's teams. Keeping my fingers crossed.

Thank you

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@rosiegirl It sounds as if you are doing all of the right things. Generally, orthos who do sports teams are very good.

@debbraw is right — prepare a list and make sure you get through the list. I had a PCP appointment a couple of weeks ago and afterward, I realized I had neglected to put a couple of things on my list. I try to remember to jot them down as I think of them, but I sometimes tell myself that I will remember, and then I don't.

I hope you will let us know how the appointment goes, and that the new doctor finds something that he can help you with.
JK

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HI Everyone, It does seem that knee discomfort and pain continue for a long while for some people. I'm 4 months out and have extremely tight bands around my knee. I had relief for about a week when taking Meloxicam but it all came back. I walk and exercise but fine it easer to do things if I warm up first. i.e. leg on ball with strap under foot gently back and forth. So it seems not to go away. My pt offered "Ive never seen anyone lay down scar tissue like you." So I guess keep moving.

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Hi all – Add me to the list of people with long "recoveries." I had my surgery just a few days after rosiegirl — July 2018 — and continue to encounter problems. I have pain with stairs, especially going downstairs when my (right) surgery leg is the one behind, if that makes sense. Overall though, my knee is getting *much* better when in the car, sitting, and walking, but it still feels strange. I attribute recent improvement to at home PT/stationary bike and to finding a *gentle* physical therapist who practiced cupping, myofascial release, and massage. Her work really made a difference. I can also relate to rosiegirl's sensitive scar – I went through the entire winter unable to wear *anything* that rubbed my scar, tights, jeans, everything. It made life pretty miserable. Only now can I wear jeans, etc. This entire experience has made me willing to do *anything* to avoid having my L knee replaced. I hear there are gel-type injections, now being used instead of cortisone shots. I think that's my next step.

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@babette

Hi all – Add me to the list of people with long "recoveries." I had my surgery just a few days after rosiegirl — July 2018 — and continue to encounter problems. I have pain with stairs, especially going downstairs when my (right) surgery leg is the one behind, if that makes sense. Overall though, my knee is getting *much* better when in the car, sitting, and walking, but it still feels strange. I attribute recent improvement to at home PT/stationary bike and to finding a *gentle* physical therapist who practiced cupping, myofascial release, and massage. Her work really made a difference. I can also relate to rosiegirl's sensitive scar – I went through the entire winter unable to wear *anything* that rubbed my scar, tights, jeans, everything. It made life pretty miserable. Only now can I wear jeans, etc. This entire experience has made me willing to do *anything* to avoid having my L knee replaced. I hear there are gel-type injections, now being used instead of cortisone shots. I think that's my next step.

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@babette I'm glad to hear that things are getting better for your knee. I feel so fortunate to not have encountered any of the problems mentioned. My scar was never sensitive, and other than not having quite as much flex as I would like I couldn't ask for more. They say every TKR is different. I can understand your reluctance to undergo another but just because you struggled with one does not mean a second one would cause the same problems. I have even heard of people having bi-lateral TKRs and the two knees being totally different in recovery.
JK

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@babette

Hi all – Add me to the list of people with long "recoveries." I had my surgery just a few days after rosiegirl — July 2018 — and continue to encounter problems. I have pain with stairs, especially going downstairs when my (right) surgery leg is the one behind, if that makes sense. Overall though, my knee is getting *much* better when in the car, sitting, and walking, but it still feels strange. I attribute recent improvement to at home PT/stationary bike and to finding a *gentle* physical therapist who practiced cupping, myofascial release, and massage. Her work really made a difference. I can also relate to rosiegirl's sensitive scar – I went through the entire winter unable to wear *anything* that rubbed my scar, tights, jeans, everything. It made life pretty miserable. Only now can I wear jeans, etc. This entire experience has made me willing to do *anything* to avoid having my L knee replaced. I hear there are gel-type injections, now being used instead of cortisone shots. I think that's my next step.

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@babette I'm 5 months post-op bilateral and have plenty of pain in right knee, left is getting better. The therapist I see is like yours with the gentle bending and myofascial release. What has cupping done for you? My scars are sensitive too, I've cut a lot of my pants off at the knee! I've been wearing shorts since January.

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@doodles418

@babette I'm 5 months post-op bilateral and have plenty of pain in right knee, left is getting better. The therapist I see is like yours with the gentle bending and myofascial release. What has cupping done for you? My scars are sensitive too, I've cut a lot of my pants off at the knee! I've been wearing shorts since January.

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Although my swelling never went down after my surgery, the pain was minimal. It's only been weeks, almost 2 years since the TKR, that the pain has started to impact my mobility and ability to sleep. I have not gone back to PT. I am waiting until I see the surgeon before doing anything.
I hope that you find relief soon and your swelling starts lessening soon.
Thank you.

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