Patient perspective: Knee osteoarthritis

INTRODUCTION — This topic was written by an individual patient diagnosed with knee osteoarthritis (OA). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

●(See "Clinical manifestations and diagnosis of osteoarthritis".)

●(See "Management of knee osteoarthritis".)

●(See "Management of moderate to severe knee osteoarthritis".)

●(See "Overview of surgical therapy of knee and hip osteoarthritis".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

●(See "Patient education: Osteoarthritis (The Basics)".)

●(See "Patient education: Osteoarthritis symptoms and diagnosis (Beyond the Basics)".)

●(See "Patient education: Osteoarthritis treatment (Beyond the Basics)".)

BACKGROUND — My story with osteoarthritis (OA) began in 1976, when I was 16, although I did not hear the term "osteoarthritis" until 40 years after my first surgery. I am a 61-year-old male, and I currently live in Sydney, Australia, where I work full time as a psychologist in private practice.

Injury — I have severe OA of my right knee, and it is post traumatic in etiology. I was an elite sportsman, both as a rugby player and a middle-distance runner. The injury was sustained on Saturday, July 3, 1976, when I was playing rugby union for my boarding school. I still remember this date because on some deep level, I realized that the injury would have a profound effect on the rest of my life. I was playing five-eighth (stand-off position) for the under 16s, and one of the opponent players legally tackled me. The force and angle of this tackle meant that my right knee bent against the normal movement of the joint. The pain was severe, and my knee quickly became swollen and stiff.

I remember trying to sleep that night, but the pain was intense, and the boy next to me in the dormitory asked me throughout the night, "Tom, are you all right?"

Seeking medical care — In hindsight, it seems amazing to me that I did not receive any medical treatment on the day I was injured, but a few days later, I saw the school nurse, and it was suggested I consult a doctor. The school had a relationship with an orthopedic surgeon who specialized in knees, so I eventually saw them. Before seeing the orthopedic surgeon, I had several treatments with a sports injury physical therapist at a sports clinic. Physical therapy had limited benefit and it was felt that surgical repair was needed.

I did try chiropractic treatment, which was also of limited efficacy, but it did give me a plausible hypothesis as to why I may have been more prone to injury. About 18 months before the injury, I had fallen off my skateboard and landed very hard on my hip, and as it was explained to me at the time, I had displaced my hip and had developed a slight curvature of the spine, hence one leg was compressed while other leg (the one I injured) was elongated. Attempts at adjusting my spine and hip alignment were made, but alas, the damage was done, and surgical repair was recommended.

Before I had surgery at the end of 1977, I must have dislocated/injured my right knee on 20 occasions, likely incurring more damage along the way.

SURGERIES AND INTERIM TREATMENT — In 1977, at age 17, I had a medial and lateral ligament repair and total meniscectomy. I remember when I woke up after surgery there was a little yellow-capped plastic specimen bottle next to my bed with my cartilage in it.

After surgery, I had a heavy plaster cast on with two drains, and my knee was bent at about a 45-degree angle. I remained in the hospital for 10 days. I distinctly remember that during my first bedside physical therapy session, when my feet first touched the ground postoperatively, it felt like the weight of the cast was going to tear open the wounds. I was given no warning before putting my feet on the ground; had a health practitioner explained this feeling, I may have had some peace of mind when we began physical therapy.

I was surprised when my cast was removed 12 weeks later to discover that my incisions were running up and down my legs and not across. I was not concerned about the aesthetics of the scars but felt dread whenever I attempted to get out of bed and walk with crutches because due to the pain, my adolescent brain was telling me the act of walking was going to do more damage. A little bit of knowledge at that point would have helped.

I continued with regular physical therapy after my plaster cast was removed. There had been significant wasting of my leg muscles, but my knee joint appeared to be stable again. I remember my orthopedic surgeon telling me that I would have to do the exercise regimen I had been presented with for the rest of my life, but it came across as a cursory comment and I did not take his advice seriously. There was no real discussion about the exercise regimen other than a passing comment that "you need to do these exercises for the rest of your life." I was given no rationale or education as to why I should do the exercises. I feel that with the appropriate information, I would have understood the value of the regimen, and it could have been a good source of extrinsic motivation and could have increased my self-efficacy. I understand that the evidence base at the time may not have been as good as it is now and that surgeons may not be the appropriate people to share this information, and I hope this scenario has improved for patients today.

After surgery and physical therapy, I had no regular follow-up treatment, but my recovery proceeded well, and I resumed playing rugby again the following season. During my recovery period, I did my static exercises at a beach near my home, where I saw some people doing garbage collection on the beach. I ended up getting a job with them and loved it, and I believe the nature of this work helped keep my knee strong – call it accidental physical therapy. Being outside, active, and on my feet all day helped keep me at an ideal body weight and maintained strength in my knee. I continued to do this job for the 6 years of my undergraduate and postgraduate studies, and in fact, I continued in the role for 14 years while working in the early part of my career as a psychologist. I feel honored and humbled to be a psychologist and I love the vocation, but unfortunately, it is a very sedentary profession. The garbage collection job allowed me physical manual work that, in many ways, replicated the physical activities and movements recommended in the program to which I have been exposed in the last five years by a multidisciplinary team with specialized knowledge in helping patients with knee and hip issues, especially osteoarthritis (OA).

When I was 28, my orthopedic surgeon performed an arthroscopy on my knee to remove bone fragments, which he described as the size of peas. He was a brilliant surgeon and I had great level of respect for him and his medical opinion. My surgeon was known to my school and my parents, and he was considered the best knee surgeon in Australia at the time. He was an ex-footballer himself, so he had a level of understanding about the importance of sports in my life. I remember when I was coming out of the anesthesia, he stated to me that at 28 I had the knee of an 80-year-old man, and he added, "Tom, it's time to give up the rugby boots." I knew what that meant. I also knew he was right. I struggled to play for one more season and ended my career as a second-grade hooker. My surgeon was very good as a surgeon; while he was a little short on empathy and compassion, his skills as a surgeon were first rate and that's what I needed.

The surgery at age 28 was my last surgery. My doctor said that he would not consider doing a knee replacement on me until I was 50, and I remember him telling me that my turning 50 would coincide with his retiring, and that I could be one of his last patients. He has retired, and I have not yet needed a knee replacement. I am going strong, and my knee is feeling okay thanks to my involvement with the OA management program in the last five years and the increased knowledge and education I have received to help with self-management of my condition.

LONG-TERM IMPACT

Impact of osteoarthritis and treatment — At the time of my injury, I was a young man, and like most young people, I thought I was bulletproof. I was very fit and athletic, and as I mentioned, I enjoyed all sports and physical activities. The one exception is that I was not into doing weights, and I now feel that this may have been a good thing to build and maintain muscle strength, especially around my joints.

In addition to playing rugby at school, I ran the 800 and 1500 meters, and running wasn't just something I did – it was part of my psyche. I remember arriving late for a university tutorial group after riding my push bike to the group, and my professor saying, "Mr. Buttel, do you know the difference between you and the other students in this tut group? They live in their minds, but you live in that body of yours." I was angry at his comment, but after many years, I realized that he was right – I am very connected to my body and therefore remaining fit and active are important to me.

Having knee osteoarthritis (OA) hasn't really stopped me doing things, but I am a competitive person and it has stopped me competing at the level I would have been able to if I did not have knee OA. Not wanting to risk reinjury, I played low-grade rugby, and although the damage to my knee compromised my running ability, I was able to continue running. No medical practitioner participated in the decisions regarding my continued participation in sports during my late teens and early 20s.

I have tried to remain active and fit despite my OA, and I continued playing rugby until I was 29 years old, a little after I had the surgery to remove bone fragments. When I was around 26, I noticed changes in the morphology of my knee. This seems to be when the arthritic changes were taking hold. I also began to fear being caught at the bottom of a ruck or maul. I feared what I would call a forced manipulation, which in layman's terms would force my knee to bend beyond what it is now capable of due to the arthritic changes to my knee. It was a scary thought, which unfortunately was realized when I had a fall in 2018 – I learned at that time that my fears were well based.

My fall in 2018 was very traumatic and painful; it resulted in swelling, internal bleeding, and posttraumatic stress disorder (PTSD) – I was having flashbacks for several months – and it has left me hypervigilant to this day. I was attended to by several rheumatologists because I was lucky to be attending the Outcomes Measures in Rheumatology (OMERACT) conference that year. I had crutches and was prescribed nonsteroidal antiinflammatory drugs (NSAIDs), and I used ice to help with pain relief and swelling and gentle exercise to keep the muscles moving and aid circulation.

Obviously, there is a background level of pain that I have had to live with and manage as best I can. My practice of meditation has been very helpful in allowing me to manage my pain, and I also believe that it extended my time that I was able to play sports. My philosophy, rightly or wrongly, has been that the mind is more powerful than the body.

Self-management — My general practitioner (GP), whom I had been seeing since adolescence, never treated my knee problems. I have never had any ongoing treatment or routine follow-up from any medical or allied health practitioner other than in the postoperative period or following a trauma episode. At times of flare-up of my condition, I use rest and methods such as ice, elevation, and a knee brace.

I learned about a study to look longitudinally at the effect of glucosamine sulphate, called the Leg Study, from an advertisement in my local paper. I applied to be in the study but did not meet the criteria, possibly because of the severity of my knee OA (ie, bone on bone). Although I had not qualified for the study, by applying, I had been placed in a database, and my name surfaced again when I was involved in the Healthy Weight for Life (HWFL) study and Study of ZYN002 (transdermal gel) in Patients with Knee Pain due to Osteoarthritis (STOP1). These studies have allowed me the opportunity to liaise with several rheumatologists, clinician researchers who are specifically dealing with knee and hip OA and are world leaders in their field.

I had never heard the term "osteoarthritis" until I met the research team at Royal North Shore Hospital in Sydney, which was 40 years after my injury and first surgery. No doctor or health professional had ever mentioned that term to me. But I never requested treatment so the opportunity for diagnosis did not present itself. I had realized that my knee pain was something I just had to live with and do the best I could to cope and stay mobile. I was not surprised by the diagnosis, but with a label or diagnosis hopefully comes some treatment options, which was what I was interested in, and I felt let down when I realized that these treatment and self-management options had been denied to me in a formal sense. As luck would have it, I possessed enough insight to have been applying many of the treatment options that I now realize from an evidence-based perspective are helpful for someone in my condition, but this was mostly by being fortunate enough to have met the right health professionals.

My self-management of my knee OA has been enhanced due to the education I received, which is based on evidence derived from research. I am extremely grateful to the medical practitioners I have met and acknowledge their professionalism and dedication to a field of medicine that I would think at times can be challenging.

The take-home messages I have learned from these professionals are the importance of:

●Maintaining a healthy weight – increasing the weight my joint has to carry is not going to help

●Continuing to exercise and move the joint and performing specific exercises that can target the area will help my condition

●Maintaining a positive mood, promoting and maintaining self-efficacy, and appreciating the importance of self-management for my OA and any chronic health condition

I have rarely taken any medications to help manage my pain. I have for very short periods taken an NSAID, but if I added up the time in total that I have taken these drugs, it would amount to 3 months in 40 years. I took a prescription NSAID for a few weeks in my late 20s, but I experienced some gastrointestinal side effects and stopped taking the medication. After my fall in 2018, I was prescribed an NSAID with the caveat to only take it for six to seven days, and I was more than happy to comply with my doctor's advice. I have relied very heavily on ice for both pain relief and inflammation.

OA is a condition often associated with chronic pain, and it affects the whole person. It is implicated in numerous comorbid conditions, such as diabetes and cardiovascular diseases. Chronic pain has certainly been an issue for me, but over 40 years of living with knee OA, I have developed some good skills to help manage my pain levels. This, I believe, has been facilitated by my practice of meditation for 30 years and trying to use cognitive behavioral therapy (CBT) strategies to maintain and maximize my thinking and positively enhance my psychosocial factors. To coin a phrase: "It's not so much what happens to us in this world as the ways we think about it."

No health professional has ever recommended CBT or meditation to me, and my pain management has been mostly self-directed from a personal and professional interest in these areas. The education I have gained via research participation, liaising with leading researchers and clinicians, my own education via online and journal investigation, and participation in OA-specific treatment programs such as the OA management program has given me a clear rationale for what I can do to self-manage my OA. This has increased my self-efficacy and improved my mood.

COMMUNICATION AND RESOURCES

What I wish I had been told — In the early days post-surgery, I feel I was given no meaningful information or advice. At 27 years of age, when I feel my osteoarthritis (OA) began due to observed morphologic changes in my right knee, very limited movement in the joint, and an increase in background pain at rest, I was given no (and I mean no) information about OA. I had no idea what a rheumatologist was, and it is only by luck that I am now involved with a highly skilled medical and allied health team and participating in the OA management program. My medical providers told me nothing, and I now wonder if I had been informed of the possibility of a diagnosis of OA in my 20s, 30s, or 40s, whether it would have impacted the trajectory of my OA.

Making decisions about my care — The decision to move forward with each of my surgeries was the result of a shared decision-making process. Even at 17, I recognized that my first surgery was needed. However, I was not informed about the follow-up care and rehabilitation I would need following the surgeries, and I felt that part of my care was done to me as opposed to with me.

In the early days, there was no shared information, and I feel that patient education was absent and underutilized and possibly seen as unimportant. In more recent times, I have been introduced to several online resources that could help patients with self-management of their condition. (See 'Resources' below.)

What I wish had been done differently — I wish my general practitioner (GP) had commented on my knee on physical exam and made an appropriate referral.

Advice to clinicians — Health care providers need to be educated on OA so that they can then give the best current advice and information to their patients, and treatment needs to be drawn from evidence-based research. Clinicians need to listen to their patients and be open to learning from their patients' lived experiences and any wisdom that the patient may possess, and they must employ a shared decision-making attitude and use a holistic approach to care. They should also recognize that no one can know everything so where appropriate, make a good referral.

Resources — Because I am sedentary enough in my daily life, I listen to the Joint Action podcasts while walking.

I have been introduced to the online resources My Joint Pain; Pain Australia; and Paintrainer, which is a cognitive behavior therapy (CBT)-based program. This Way Up clinic is also CBT based, and it is mostly for anxiety, but the comorbidity with anxiety makes it relevant to many patients with OA.

I also read many books on meditation because I believe in the power of the mind, and as a runner, I tried to develop this as a way of pushing through the pain wall and to extend my running career because of my injury.