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Karen’s story: Living with osteoarthritis of the knees

Hi Karen: Tell us about yourself.
My name is Karen Nicoll and I am 49 years old. I live in the UK with my husband and two sons, aged 14 and 11. We are a very active family with sport being at the core. Running was my passion and now I love cycling, skiing and rowing, when I get the chance.
How did you get your first diagnosis?
In my late teens, I was diagnosed with rheumatoid arthritis and received a secondary diagnosis of Osteoarthritis 20 years later. Rheumatoid Arthritis is an autoimmune disease in which the body's own immune system attacks the body's joints, whereas Osteoarthritis is a disease of the whole joint, particularly the cartilage and can arise through a variety of causes; in my case, the OA in my knee was likely precipitated by sports injuries in my twenties.
While the rheumatoid arthritis brought challenges, especially during flare-ups, it also taught me a lot about resilience. There were times when the pain was intense, particularly in my shoulders, elbows, and wrists. During those periods, my mobility was restricted, and I spent a few weeks in the hospital receiving physiotherapy and hydrotherapy, which helped me regain strength and stay optimistic. Despite the ups and downs of remission, I learned to appreciate the moments when I felt better and to persevere when things were tough.
What did your pain feel like during those years?
The pain was challenging, like a persistent toothache, and since it was invisible to others, it could sometimes feel isolating. But as a young person with so much ahead of me, I stayed focused on what I could do, rather than what I couldn’t. I was lucky to have a great support system from my friends and family, combined with my belief that things would improve, helped me stay positive. My condition went in and out of remission for about 10 to 15 years, but with my network of support and a hopeful mindset, I was able to look ahead and keep moving forward.
How did your pain return?
We had just moved into a new house, and I was doing home renovations. The next morning, I felt a sharp pain in my shoulders, it's the kind of pain you don’t forget. After seeing a rheumatologist and undergoing blood tests to check my erythrocyte sedimentation rate (ESR) and C reactive protein (CRP) levels, it was confirmed that the rheumatoid arthritis was back, and this time, it was quite severe. I began a biologic treatment with daily injections, which brought significant relief to my rheumatoid arthritis and made things manageable.
But eventually, the pain returned, this time targeting my knees, this is when I received my secondary diagnosis of Osteoarthritis. I’ve always had knee problems, likely from my years as a runner, which started when I was young. In my late twenties, I had a couple of arthroscopies to repair a torn meniscus, but running has always been a big part of my life.
However, a few years later, things became more challenging. My knees swelled, making it hard to walk, stand, sit, or even get in and out of the car. Sleeping was hard sometimes too as the severe pain triggered the knee muscles to spasm and contract which locked my knee, to release it I had to hold either side of the kneecap with both hands and gently release it. There were moments when I felt like my body wasn’t cooperating, I felt like I was trapped in an old person’s body.
How did your pain change and how did you manage it?
While all my other joints were under control with the biologics, the osteoarthritis in my knee was progressing and MRI scans showed the deterioration taking place. My cartilage was slowly disintegrating to the point where it was bone on bone. It’s incredibly painful. I could not go for a walk with my kids or get up the stairs. I remember we booked a magical trip to Lapland, but had to cancel it because of the pain in my knees. Although I would have preferred to delay it until later in life, my consultant discussed the pros and cons with me, and we both agreed that this was the right time for a knee replacement.
I was very fortunate to have private health insurance – because it’s very unlikely someone my age would get a knee replacement in the UK via the National Health Service (NHS). Although the recovery was hard with lots of physio, after the knee replacement, I felt like I was on Cloud Nine! I had a new lease of life. Now, I can go skiing with my friends and family, cycle and I can even run again. I only go short distances, but it is so much more than I could do previously.

What does it mean to work for a company with the vision of a World Free of Pain?
It is one of the main reasons why I joined Grünenthal. It means a lot that we are able to give patients alternative treatments that can make a big difference to their lives. Osteoarthritis is sometimes classed as a condition for the older generation, but younger people who do a lot of sport can be affected as well.
What advice do you have for other people with this condition?
Keep moving as much as you can, because staying active is highly beneficial. Regular exercise is crucial for keeping your joints mobile. If certain activities cause pain or become difficult, adapt them as needed, and avoid sitting in one position for extended periods.
For me, my knee replacement has given me incredible freedom. I have got my life back and I can be an active mother with my kids again. Knee replacements are not right for every person living with knee osteoarthritis, but it was the best approach to my situation. It is also important to work with a physio to get mobility back quickly and push your recovery forward.
It must be difficult for people who have family members or coworkers with this condition too.
There’s a delicate balance between being supportive and doing too much. At times, I felt a bit overwhelmed when others wanted to do things for me because I really value my independence.
It must be hard to find the right balance.
Communication is so important in this respect. You have to say how you feel and the level of pain you are experiencing – as well as the type of help and support you want. I kept quiet for too long, probably because of the embarrassment with struggling to walk at at such a young age. But if you do not talk about it, nobody will know how you feel.