D50s last shotsmall

“It’s there and I’m stuck with it” – chronic knee pain after knee joint replacement


ResearchBlogging.org

I share an office with an Emeritus Professor of Orthopaedic Surgery.  He snorted at me one day, and showed me the stats from our national joint register database where I saw that while the main reason given for revision of a total hip joint was dislocation, and pain was the sixth most common reason given; in the case of revision of knee joint replacements, persistent pain was the most common reason given.

Some studies have shown between 6 – 30% of people receiving total knee joint replacements have ongoing pain months after their immediate post-surgical recovery.  With knee joint replacement such a common surgery for osteoarthritic knees, and some reports of up to 33% of the adult population having OA of the knee, that’s a lot of people who continue to have pain!

It’s not clear why some people go on to develop chronic pain after surgery, but some vulnerabilities include having had persistent pain in the past, having psychosocial factors present such as unhelpful beliefs (hurt = harm) or depression, anxiety or other psychopathology, and having other unhelpful health habits such as smoking. It’s certainly an aspect of post-surgical pain that I’m interested in because of the large number of surgeries that are performed – and the relatively high rate of dissatisfaction with the outcome (one study estimated 1 in five people were not happy with the outcome, and satisfaction with pain relief varied from 72-86% and with function from 70-84% for specific activities of daily living, Bourne, Chesworth, Davis, Mahomed & Charron, 2010).

How well people accept, adapt to, or cope with persistent pain after a total knee replacement varies.  In a study by Jeffery, Wylde, Blom, and Horwood (2011) qualitative methodology was used to begin to understand how people live with pain when the ‘fix’ they were hoping for doesn’t work out as well as they wanted.

These participants were recruited 12 months after TKJR, a procedure they’d had in the UK’s National Health Service.  They all reported moderate to severe pain (as part of another research study), and had not had revision surgery.  Because of the methodology employed, quite a small group of participants were interviewed (a total of 28 were interviewed until ‘data saturation’).  Data saturation, in this case, occurred when interview transcripts had been coded using thematic analysis, and no new codes emerged.  (Thematic analysis has some similarities with grounded theory, btw, but differs in that isn’t a complete methodology)

Cutting to the chase, several themes emerged from this analysis:

  1. The degree of acceptance or adjustment to ongoing pain wasn’t related to the degree of pain experienced
  2. Adjustment or acceptance depended on various factors including whether they were better, or worse off since surgery, as well as the input pre- and post-surgery by the surgeon
  3. Participants reported they felt abandoned by surgeons – and discussed the kinds of support they would have liked

It’s important not to over-interpret the findings from this study, but I did think it interesting that about half of the respondents didn’t appear overly concerned about their pain – the authors of the study thought this indicated acceptance.   These participants said things like

“. . .it’s just a case of you’ve gotta face up to it and you’ve gotta get on with life and you’ve gotta accept it” (John, age 74 years).
“. . .Once again, it’s part of my life, you know, I just don’t, I don’t think about it much. . .” (Phyllis, age 81 years).

The other half of the participants were not as accepting, and said things like

“Depressed, totally depressed, sad, miserable, charred off, all the things that go with that that you can think of” (Dennis, age 59 years).

“. . . I just don’t know what to do with it.. . . I was in so much pain I said to my husband, and it’s only him I’d tell, I wouldn’t tell the family, I said if I don’t do something I shall, well I shall jump off the bridge” (Sally, age 75 years).

The important point was made by the authors: the degree to which people accepted their pain was almost always related to “…individuals’ perceptions of improvement or deterioration in circumstances since their TKR. Those perceiving an improvement in pain or functioning expressed little distress and a more accepting attitude.”

One of the other studies I looked at while researching this post was a paper by Riddle, Wade, Jiranek and Kong (2010) which identified that pre-surgical pain catastrophising predicted post-surgical pain outcomes.

I wasn’t surprised at this – it makes sense that someone who catastrophises is likely to (a) be predisposed to having an over-active amygdala which will influence the way in which the whole sensitive nervous system responds to a planned insult to the body and (b) also interpret post-operative pain in an equally alarmed way.  This doesn’t bode well for post-surgical recovery involving mobilising on a painful and possibly swollen knee, and especially in any hospital system that wants people discharged as soon as possible so the bed can be available for someone else.

We need to be cautious, though, about the way the Riddle, et al., study is interpreted – conclusions we can draw from many studies such as the Bourne, et al., (2010), Jeffery, et al., (2010), and many non-joint-replacement studies on back pain and disability show that it’s  the distress, or how well the person adjusts to having ongoing pain, and the impact that this has on function, treatment seeking and well-being in general, not the pain intensity that seems to matter.

Returning to the Jeffrey, et al. (2011) study, presurgical preparation by the surgeon seemed to play an important role in how well people accepted ongoing pain.  Those that had been advised that pain is likely seemed to view pain as normal, and were therefore more able view the pain as able to be tolerated.

Where am I going with this? The main points I want to make are these:

  • post-TKJR pain is common, with up to 30% of people continuing to have pain for 12 months after surgery
  • persistent pain is the most common reason for revision of TKJR
  • the degree of pain is not directly related to distress or function
  • there are several vulnerability factors that can be identified before surgery that are correlated with post-surgical pain
  • at least some of these factors can be addressed before surgery, while how we respond immediately after surgery can also have an impact

Maybe one of the best ways we can help people cope is to inform people prior to surgery that persistent pain afterwards is common, therefore not an indicator of something awful – then after surgery, give people with risk factors such as catastrophising, health anxiety, distress, low mood and limited social resources adequate and appropriate chronic pain self management sooner rather than later.

And perhaps surgeons could remember that surgery is not a quick fix for up to one third of their knee joint replacement patients.

Bourne, R. B., Chesworth, B. M., Davis, A. M., Mahomed, N. N., & Charron, K. D. (2010). Patient satisfaction after total knee arthroplasty: who is satisfied and who is not? Clinical Orthopaedics & Related Research, 468(1), 57-63.

Jeffery, A., Wylde, V., Blom, A., & Horwood, J. (2011). “It’s there and I’m stuck with it”: Patients’ experiences of chronic pain following total knee replacement surgery Arthritis Care & Research, 63 (2), 286-292 DOI: 10.1002/acr.20360

Riddle, D. L., Wade, J. B., Jiranek, W. A., & Kong, X. (2010). Preoperative pain catastrophizing predicts pain outcome after knee arthroplasty. Clinical Orthopaedics & Related Research, 468(3), 798-806.

25 comments

  1. Not sure why medicine is so resistant to consider osteoarthritis a chronic pain condition. It’s still one of the last bastions of the biomedical model, the ‘if it hurts, we just cut it out and replace it with a new one’ idea. We learned years ago that this doesn’t work with most chronic pain conditions (think amputating limbs with neuropathic pain), so why should we expect it will work with other types of chronic pain? Just because we can see joint space narrowing on an x-ray doesn’t necessarily mean that’s the pain generator, right? How often has that been shown in chronic LBP or neck pain?
    What would happen if we flipped this question around? When it ‘works’, what is the mechanism behind that? I would propose that sitting a patient down, showing them an x-ray of their joint before the surgery, and then one after the surgery, has got to be one of the best placebo mechanisms available. It’s right there, in black and white in front of you – you should feel better now.
    Just my two cents worth.

    1. Hi Dave
      I think it could be because by comparison with LBP the results from joint replacement can be quite successful – a 60% positive outcome rate is pretty good by comparison with most other chronic pain conditions! And it’s intuitively appealing too – if we think of the human body as simply an organic biomechanical machine rather than a dynamic, constantly remodelling organism!
      I still have arguments with one or two docs who don’t want to recognise that OA has a central sensitisation component (mind you, one of those docs doesn’t ‘believe in’ central sensitisation!).
      What is remarkable is that the participants in this study were moderately to severely affected by pain – and yet half of this sample were fairly accepting of this and not terribly distressed by their pain. Now if only I could get the docs to understand that having pain is not inevitably associated with needing or even wanting treatment!

  2. What a great post, Bronnie.
    Thank you for this.

    I absolutely agree with you that early pre- and post-rehabilitation could greatly benefit from the approaches and strategies that we traditionally find in a pain management environment and early detection of the risc factors is paramount. And considering the neurobiological science behind cybernetics in biological systems there is a central mechanism that plays a big and a hugely underestimated part.

    I would add, though, a very important point regarding ongoing post-surgical pain. This point deals with peripheral, spinal and central mechanisms. In many of these studies it doesn’t look like they have calibrated the studies in terms of dominating pain mechanisms. Kehlet, Jensen and Woolf have looked at some of the biggest risc factors for on-going post-surgical pain (Kehlet 2006) and found that neuropathic pain is a major component.

    Given the circumstances in the surgical environment it is very likely that a neuropathic pain state can develop: It could be present but unrecognized prior to surgery, it could develop in relation to the surgical techniques and it could technically develop in relation to the positioning of the patient during the procedure.

    The problem of course with neuropathic pain is that you can find it present in a spectrum from a mild to a severe state (eg. CRPS). One of the major clinical problems with this condition is that it makes for a very uncontrollable post-surgical recovery: it’s often extremely sensitive to mechanical stimuli (kind of makes movement therapy quite a challenge…), it has spontaneous, latency and wind-up capabilities and it often wrecks the patients sleep hygiene.

    I can certainly imagine several psychosocial factors being influenced by the neuropathic component including fear-avoidance in relation to hyperpatia and paroxysms and a challenge in pacing movement, exercise and activity with latency and wind-up phenomena.

    I work with post-surgical patients in an out-patient orthopeadic setting and I personally believe that the neuropathic component is a potential bomb under the recovery period. Therefore it needs to be identified as early as possible and measures be taken accordingly (although that is quite the challenge in a mono-professional setting like the one I’m in).

    Just had to add this point to a brilliant post. Thanks.
    Love to have you back on the web.

    Kehlet H, Jensen TS, Woolf C (2006) Persistent postsurgical pain: risk factors and prevention. Lancet 367: 1618-25

    Kind regards

    Adam Bjerre
    Physiotherapist
    Denmark

    1. Thank you so much Adam! And I couldn’t agree with you more about under-recognised neuropathic pain post-surgically. A study I’m about to start on (once the quake dust has settled a little) is identifying the number of people presenting for joint replacement who have pre-existing central sensitisation (eg the Yunus cluster of problems such as irritable bowel syndrome, depression, TMJ dysfunction, migraine etc) – then follow these people up to see how this influences the prevalence of persistent pain. It will be interesting! At least in your patient’s case, they have an informed and enthusiastic clinician working with them – all the best with your work, I know how hard it can be without an interdisciplinary team alongside you.

      1. I am 9 months post op from tka, the Dr. that did the surgery try to avoid my calls early on when I first notice the recovery times was taking longer than other people that I had surgery with. I went back to see him he said there was nothing wrong but could not tell me why I was still in pain so I went to see his partner and he said give it a little while longer and i should do just fine after taking the xray of my knee.Okay I’m 9 months post op the pain is still there I”m seeing another orthopedic surgeon I have to go back next month, I’m wearing a knee brace and putting Lidoderm patches for pain. I don’t think this is the norm. Before surgery everytime I called he took the call now that my surgery is over something isn’t right he stopped responding to my calls. Is this what all Doc’s do? I don’t think so.

  3. I had surgery Partial knee replacment in 2007. I fell 2 days after getting out of the hospital. Therapist immediatly called doctor for me to get Xray they said not necessary. I continued to have chronic pain for 3 years kept going back and all they thought was I wanted drugs. They actually stopped returning my phone calls. Wrote to another doctor who took me on as a patient only after doing a test on my knee to find out my implant was loose in my knee and I had a lot of bone loss because of it. Had the revision to total knee in 2010, got infection in Janury of 2011 and have chronic pain it’s constant all the time. Pain mgt center put me on gabapentin and clonidine. up to 1800 mg of gabapentin and can’t take more than that or it impacts my vision. So here I am with chronic knee pain since the 1st surgery in 2007 when i think they should have takne xrays right then and there and think they would have found that it became loose and I would not be in this position today. Thank God I have a very good GP who is working with me and my pain and is most likely going to send me to a different pain management person. I am fed up it wears on you to be in pain all the time. Thank God I have found someone who actually believes me and is helping me.

  4. Hi Donna;
    I appreciate your position after your TKA. I too, had a left TKA last Aug. 2012, and continue with the pain. The surgeon is no longer in the picture, as he just kept patting me on the back with a smile, and would say, okay, see you next month. What? The only information and direction I was receiving was on the internet. This is wrong. My primary Dr. assumed my issues by default and has submitted a request for me to be seen for a second opinion. Even if the outcome is to have the knee surgery repeated, there is no way I will ever do it again. My right knee is supposed to be done, but I will never go through the surgery again. I think the most frustrating thing is hearing from family and friends how everyone they know who has had the surgery did so well and so why am I still hurting. I agree with the comments above in that more time spent before the surgery is necessary at least to educate and perhaps determine the outcome complications or, on the positive, success. I am very much aware how the majority of the patients do well after surgery, and this is primarily the reason I went ahead with the TKA. I expected myself to do well as this was my 4th knee surgery, and they all went well. I wish more than anything that a surgeon or physician would take my complaints seriously and just validate my concerns. I am doing everything I am supposed to do, take frequent walks and exercise, eat right, yadda yadda yadda. I’m still on disability and I would really like to get on with my life!!!

    1. I, too, have had persistent pain since my right knee TKR in 2013. It will be three years this month. I have full range of motion, but cannot walk any distance without significant pain. I’ve seen five physical therapists, two chiropractors, and a revision specialist at Duke. The latter said, “when the pain is bad enough, just let me know.” Translated: I’ll have to get a new knee.What bothers me the most is that no one has given me an explanation for the persistent pain. So here I am, three years later, with significant knee pain. I continue to work, but at times, I simply sit in my office chair in pain. Only when I get home and put my knee up on my recliner couch do I feel relief. I will NEVER have knee replacement surgery on my other knee. I still have inflammation from my Smith and Nephew Oxyinium implant. Oh, yes, my original surgeon retired six months after my surgery, just after patting me on the back as though I were a child complaining of a a boo-boo.

      1. I’m so sorry you’ve had this experience, and the response from your surgeon. If you have access to a good comprehensive pain management service, with medical, occupational therapy, physiotherapy and psychology I would seriously recommend seeing if you can be referred. It’s no fun at all trying to deal with chronic pain and feeling that no-one really understands. There is a good deal of research showing that knee replacements are more prone to developing ongoing pain, and that some of this at least is from central nervous system processes (like your whole nervous system being sensitised after surgery) – what this means is that the problem is experienced in your knee, but it’s your central nervous system that is overly sensitive to what’s happening (like the alarm system being set to be too easily triggered). The treatments for this kind of pain are quite limited, and not everyone responds to them – one is a medication used for depression, nortriptyline, in very small doses that are built up slowly, and the other is an anti-epilepsy drug called gabapentin (or pregabalin is another one in this group of drugs). These work together to reduce how quickly your nervous system responds to input, and, along with a comprehensive pain management programme, can help you do more with less distress. I hope you find a way to get through this time, it’s tough – but there are people who are available to help!

  5. I am currently 10 months post-op for a TKR of my right knee. I am experiencing numbness of the surface of my knee and significant pain within the operative site and inside the joint. I am on Celebrex for inflammation and if I don’t take it, I experience a significant swelling of the knee. The pain with sleep is problematic, as it interferes with my ability to achieve a total nights sleep and wakes me up often in the night. The knee pain during the day is something I live with and can ignore, but the reasoning behind obtaining the TKR in the first place was to improve my movement and to be able to achieve activities of daily living and to walk and hike with acceptable weight baring movements.

    I am 62 years old and obese and I am 5’6” at 250 lbs. I am working out approximately 20 mins > to 30 mins increasing from 10 min. intervals to as tolerated, 4 times a week with a non-stressing aerobic exerciser [Health Rider]. I am on a strict diet but admittedly, I do not drink enough water. I have cut out meat, for the more part and include salads, fruit and vegetables, which make up my main diet. I have not achieved any significant weight loss at this time. I do not drink sodas, neither diet nor sugared. I watch the amount of refined sugars and starches in my diet. I have significant digestive disorders which are under study at the moment and total stomach emptying is not ruled out. My plan is to gain strength and to walk outside as soon as it is safe for me to do so, despite the pain in my knee.

    The disability that I am experiencing is that I can not pull my self up onto the knee, so climbing over objects and walking uphill are problematic. I am working on getting my muscles strong enough to do this despite the pain.

    So, my objective with this surgery has not been achieved and I live with chronic pain in the operative joint, which I suspect will haunt me for the rest of my life. I would love to be optimistic about this pain, but I do not observe any appreciable decrease in the level of my pain nor my mobility. I suspect that my pain source is neurological in nature. I expect to have a follow up exam with my surgeon within the next two months, but do not anticipate any resolution with my chronic post-operative pain.

    Despite all of this, I anticipate to continue on my dietary and exercise regime and to continue to gain strength despite my pain.

    Thank you for your consideration. — Janet

  6. I am 3 and 1/2 months post op tkr and have severe pain and swelling in my knee, The surgeon said I needed that he has to replace my plastic insert with a smaller one. I am hoping that if I follow my own instincts I will be able to heal from this intense surgery. The body needs time to heal. But if I have to live with this pain I will do all I can to survive.

  7. I had a full knee replacement 3 years ago & never recovered from this awful pain which feels like jagged glass particularly running down the outside of my knee.
    My general movement is very good, I have to wear a light support (turbo grip) & can generally manage but when I take this off the pain is chronic.
    The pain is connected to weight bearing.
    So much was my pain that after visiting specialists in the UK, Israel & New York, I had a revision one year ago. The pain & type of pain remains exactly the same.
    The amazing thing is I can cycle 40 miles, walk 3 miles but no matter what I do the pain remains the same, no better no worse just unbearable sharpest of pain you can imagine, I have never known pain like it, it is like no other I’ve ever had.
    I’m 66 & find it hard to believe I’m stuck with this horrible predicament, it has severely impaired the quality of my life, I still live in hope there’s somebody out there who can help me.
    With thanks
    Dennis

    1. I can totally relate to all of you. I have had the initial surgery and then two revisions as there were some mistakes made during both of the surgeries. The pain I feel every single day from the moment I get up until I get to sleep is just awful. I can’t describe it and I can’t find anyone who will help me with this. The only thing I know for certain is that I can’t live like this much longer. This has been going on since 2005.

      Judy

  8. I had surgery 5/2/2013 pain still bad,the doctor doesn’t seem to be too worried and doesn’t seem too interested if you ask me.I have no quality of life i can’t drive,can’t even walk down the back yard i live on the lounge with a heat pack.I thought this operation was to give you a better quality of life.The Doctor just said oh well some people end up with pain for ever.I never would have gone through with this if i had known this might happen.

  9. I am almost 8 months post op TKR. I was 49 at the time of the surgery. I had been bone on bone for 15 year. 7 years ago my orthopedic recommended a high tibial osteotomy with an hamstring ACL reconstruction which I did. So here is today. I’m 5’9″ 155 lbs 50 years old. I can’t for any length of time sit, stand, relax on a couch and wake up several times a night with chronic pain. If I miss a couple days of my anti-inflammatory I can’t walk at all without severly limpingl. My hip is constantly sore, by lower back is killing me because I’m overcompensating more NOW after a surgery that was suppose to help me. My dr. keeps telling me it takes a year to recover. Meanwhile I’m hangin on by a thread hoping I won’t lose my job (I’m in sales) because the pain takes away my ability to concentrate on what I need to be doing. I’m not on any pain meds just anti-imflammatories. I did 3 days a week of PT for 3 months post op, then hired a personal trainer who specialzes in joint recover/chronic pain and costing me $150 a week. While this has helped, it still goes on and on. I keep believing if I do the right things it will get better. I’m starting to lose hope and beleive that my surgery was botched and I’m stuck with it. No way would I EVER do this again. Give me back my old knee.

  10. I had a TKR in Jan 2001, a revision in 2003 and in 2005. I have chronic knee pain since the TKR. The pain is different from prior the 20001 surgery. I am on Ultram ER and Gabepenton 1800 mg. I take Hydrocodon whever I need to something physical like mowing the lawn on my riding mower, walk more than 1/4 mile sit in the car for more than 15 minutes. Life is lovely after an TKR. My doctor told my wife and kids after the second revision that he has this problem with his most of his workman’s comp patients. The joint seams to work ok. The pain goes right across the patella and down the tibia, But it is all in my mind. Great physician!!!!! After 12 years of limping around ,my hips have bursitis. Now my muscles ache from the knee on out to mu hips and my ankles. I kow when i miss a dose of gabepenton. The day is done for. Just great.

  11. I am 14 months post TKR and still having some pain especially going up and down stairs. My surgeon says I just need to strengthen my knee cap which I’ve tried to do. Done physical therapy twice and have been doing water aroebics for 5 months. Knee still hurts. I sometimes get a clunking feeling which my doctor says is normal. Don’t know what else to do. I guess I’m stuck with it.😦

    1. I was told thaat if it is not better in 12months it won’t get any better.These Doctors don’t care it is take the money and run.I have had physio,massage,ride an exercise bike and walk still no relief.Will never get me me to have the other one done.

  12. I was 42 when I had my tka and am now 48. I have suffered with chronic pain since the surgery. I have been put through every test possible and was told I had to live with it. I just saw a specialist Rothman Institute as I couldn’t believe this to be true. Well apparently it is. I am in such pain every day and forget getting a decent nights sleep. I am by having a scope done on my other knee to get some relief from significant tears I have and a cleanout. I refuse to ever get another Tka!

    1. I have been told the same thing.If it isn’t better in a year bad luck.I will never let them touch the other knee.No one told me that it could go this bad.My GP is pretty good and the only relief i get is a cortisone injection which lasts about a month.I read some comments somewhere an out of one hundred comments only 7 people were happy with the operation.I didn’t realise that when you get older you are supposed to put up with this sort of pain.So much for a relaxing life.

      1. TKR patients need to be told of the possibility of infections, pain, and any further problems by the surgeon ahead of time rather than having them glossed over or never discussing them. There are times when doctors refuse to tell the negative because they want the business and the money it produces. I have had five knee operations and the surgeon bill is almost $600,000 between them. Most surgeons do not want to lose that kind of money.

  13. I and 63 and I have had four knee surgeries on my left knee due to an infection, exploratory surgery, the removal of the infected parts, and finally the replacement of the parts. This has taken six years. I am now left with a constant pain in my left knew and a lack of bending ability that forces me to use a walker.

    When my initial knee replacement was done I was told that I would be skiing or playing tennis in a year. Now I am crippled for life. That possibility is never discussed by the doctor.

    I have been forced to tears by the depression by my condition. I can no longer work, walk, and enjoy a vacation with my wife. Because I cannot bend my knee too far I cannot fit into most cars, cannot sit in a normal aisle in a movie theater, or on an airplane. I have thought many times of trying to end this.

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