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?

THAT SOUNDS LIKE ME, BUT IT HAS BEEN YEARS! DON'T GIVE UP – IT MIGHT NOT EITHER

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@canis – Welcome to Connect. Glad you came here because there are a lot of people here who have had vastly different responses to having a TKR. Personally, I just had my second one in January 2019 and I'm happy to say I did not have the continuing level of pain your husband has endured. I know he must be totally at his wits end with it. I'd like to introduce you to several other TKR survivors who might have more to share – @ellerbracke, @dkapustin and @danielad. Also, here are a couple of threads you might want to explore:
https://connect.mayoclinic.org/discussion/has-anyone-had-a-tight-band-feeling-after-total-knee-replacement/
https://connect.mayoclinic.org/discussion/it-band-syndrome-after-knee-replacement/
Is your husband able to get a reasonable range of motion and extension? Can you share more about what his pain is like and what he can and cannot do? I know there are people here who have experienced all manner of reactions to TKRs and I think you will find some help here.

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Canis: I am sorry that your husband is experiencing such extended and severe pain. I wish I had an answer for you, but I don’t. Contrary to some or even many people on this forum, my pain also hung around for quite a while. Up to around the 4 months mark I mostly hovered between 2 and 3 most days, with spikes to perhaps 7 or so. Even now at 7 months I still have lingering aches, always 1, 3 or higher at times, which of course is nothing, except it is irritating to still have any pain at this stage. Still doing some daily knee exercises. My therapist told me to give the body a chance to recover, to do nothing for at least one day a week. I don’t have any significant swelling any more, but even now the new knee is still noticeably warmer than the other one.
I know that constant pain not only hits your body, but also can be quite depressing and messes with your mind. Perhaps others who have had similar experiences can share what eventually helped them.

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I just remembered that quite some time ago somebody mentioned that a combination of acupuncture and myofacial massage was really helping with pain reduction/relief. Perhaps one of the mentors knows where to find this post, or at least confirms that my recollection is correct.

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@ellerbracke

I just remembered that quite some time ago somebody mentioned that a combination of acupuncture and myofacial massage was really helping with pain reduction/relief. Perhaps one of the mentors knows where to find this post, or at least confirms that my recollection is correct.

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Hi @ellerbracke, here's the discussion on myofacial release therapy…

> 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 @ellerbracke, here's the discussion on myofacial release therapy…

> 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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Thank you John for posting this! I have been using this therapy for a month now and it has helped me in so many more ways than the PT therapist who are only concerned with ROM. Some are not aware of this therapy and it's benefits or are not willing to lose their patients to the tremendous benefits for those of us suffering from scar tissue pain. I asked my therapist from day one of PT about scar tissue therapy and they did not offer any suggestions. I felt my entire body out of "whack"! My hips were out of alignment, my back was pulling to one side, needless to say the pain and limited motion of my knees (bilateral). It was my daughter who is a personal fitness trainer that referred me to this clinic and I wished I would have listened to her sooner. So please, when you feel you've exhausted all avenues to try and deal with pain, do not give up! There is help out there.

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Just had 3 month Doc. Visit. Reported painful leg cramps that I have every night for past 3 or so weeks. (I wake up with my knee bent almost back to my buttocks.) I have to slowly push it straight and then all kinds of muscle cramps in hamstrings and calves. My research on leg crams suggests overworking muscles So lightened up tp no avai. Bend is still in 127 to 130 range but have lost 0 flatness to .2 mostly because my knee is so sore from bending so acutely at night, pa rx Meloxican Dr. Suggested muscle memory and such. I added Maganesium and Gator Aide. This reduced cramps until early morning vs all night. Will let Y’all know if it get better. Thanks for your contributions.

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@canls I think that's too long to have chronic pain. Was the comment, "we're told everything with the new joint looks fine" made by his orthopedic surgeon? If so I would get another opinion from a different orthopedic surgeon, one not in the same group and not within the same hospital. I think too that the mention of myofascial release therapy could be helpful if nothing else can wrong can be found. When chronic pain goes on that for that many months though I would definitely want another opinion.
JK

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@ellerbracke

I just remembered that quite some time ago somebody mentioned that a combination of acupuncture and myofacial massage was really helping with pain reduction/relief. Perhaps one of the mentors knows where to find this post, or at least confirms that my recollection is correct.

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Thanks @ellerbracke and @johnbishop for raising the issue of alternative treatments like myofascial release. I personally think that acupuncture has benefited my TKR recover tremendously. And there were several other people who had a lot of insight on myofascial release that may be able to share: @ChrisTrout @jenniferhunter and @mrhappy.

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Hi after a right total knee replacement 6 weeks ago and problems finding I was allergic to all heavy duty painkillers so could only take paracetamol I now still have extremely unpleasant burning pain down my inner thigh back of calf and into my foot Could it be a result of tourniquet?
Finding rehab on my knee very difficult

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If anyone has bad IT band syndrome ask your PT for cupping. it's like a complete turnaround!! The cupping separates the fascia from adhering to the muscle underneath. It's a great tool!

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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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@lindalockie

Hi after a right total knee replacement 6 weeks ago and problems finding I was allergic to all heavy duty painkillers so could only take paracetamol I now still have extremely unpleasant burning pain down my inner thigh back of calf and into my foot Could it be a result of tourniquet?
Finding rehab on my knee very difficult

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Hi @lindalockie, You mentioned a tourniquet. Was one used during the surgery? I'm in week 3 post op and my care team has told me that controlling the pain was job one and rehab exercises job two. Are you able to discuss your pain with the doctor?

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@canis I'm so sorry to hear about your situation but I am right there with your husband. I'm 9 months out and while my gait is good, I have lots of pain in my surgery knee (and other knee: bone on bone). It is miserable and so frustrating! I struggle mostly with walking any distance and climbing stairs (going up is improving, but down is still the step-together-step method). My surgeon thinks all is fine (based on his exam and X-rays) and I've seen another surgeon for an opinion and consult for the knee that need to be done next. One thing you should know is that most second-opinion surgeons will not comment on your TKR until you are a year out, so my visit to mine was mainly to discuss surgery #2.

I WILL say that finding the right PT is vital. My first 2 were the sort that put one on a circuit, X minutes on the bike, X minutes leg presses, etc. and a lot of "no pain no gain" talk with which I completely disagree! As does my next surgeon! My PT is all about healing: and practices cupping and myofascial technique. It helps a lot. My spine has also become out of alignment and my herniated discs have flared up because I contort myself into comfortable positions for my knee. My PT works on my back pain as well. I'm seeing a pain specialist next week for a spinal cortisone injection.

I got my referral to my incredible PT via my town's FB message board! Try networking as much as you can however you can to get the right person!

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@johnbishop

Hi @lindalockie, You mentioned a tourniquet. Was one used during the surgery? I'm in week 3 post op and my care team has told me that controlling the pain was job one and rehab exercises job two. Are you able to discuss your pain with the doctor?

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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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