Horrible knees … (long post alert)

Pithy_username Member Posts: 12
edited 28. Nov 2023, 14:11 in Living with arthritis

Hello everyone!

I tore the meniscus in my right knee about 6 years ago and scans revealed progressive osteoarthritis in both knees. Since then the damage has increased. The meniscus went in my “good” knee about two years ago and in the past 2 months my right knee has started to lock and buckle, meaning I have to use a walking stick and knee braces, and my ability to stand and walk has been massively reduced.

I also have ME/CFS and a form of reactive inflammatory polyarthritis that flares up in response to viral infections such as glandular fever and Covid, which is thought to be aggravating the mechanical degeneration in my knees. I have been prescribed hydroxychloroquine which was helpful for the inflammation, but I had to stop taking it as it gave me excruciating gastritis as a side effect. My NHS rheumatologist wanted me to try other DMARDS but I have been reluctant to immunocompromise myself.

My NHS rheumatologist and a private orthopaedic specialist have said that the only realistic option to reduce the pain and improve mobility is total knee replacement, which I am freaking out about. My understanding is that TKR is a painful and difficult surgery, and as I am only 56 it is unlikely to last for the rest of my life.

I’m currently waiting to be seen by an orthopaedic doc on the NHS (appointment in November) to find out how long the waiting list is in London and when I might be eligible for surgery. Meanwhile I’ve applied for a Blue Badge to help me get around more easily, although I’m not sure whether or not I quite meet the criteria.

I had to give up work in 2021 as pain and fatigue made it impossible for me to sustain the effort needed, and the state of my knees means I can’t go out and about as much as I’d like, so I’ve been feeling increasingly isolated. I’d love to hear from anyone else in similar circumstances about how you cope with the pain and mobility challenges. It’s relentless …

Thank you for reading this essay!