Livv's Story - Arthritis Action

I now know I had my first “flare up” aged just 18, but the inflammatory response and my symptoms including body rashes confused doctors and they disappear before I could be accurately diagnosed.

I remained symptom free for a long time and lived a full life during my twenties. The second real flare up happened when I was 32. Again, it was a range of what appeared as unrelated issues; asthma, hand paralysis and swollen feet. Once again, the doctors explored and tested for a range of potentially different conditions, sending me for numerous tests and to different specialists. Frustrated with delays and being passed around the healthcare system, I booked a trip to visit a doctor friend in Brazil. Once there my symptoms suddenly cleared and by the time I caught up with him felt absolutely fine and a bit of a fraud. I therefore dismissed it as all being stress-related due to my busy career and just taking time off was all that was needed. I came back home and life returned to normal for a while.

It was the third major flare which lasted the longest and was the most severe. Once again there were many rounds of appointments to specialists and physiotherapists and an orthopaedic surgeon, within the NHS and privately. I even travelled to see in a doctor in South Africa who recommended an MRI. Back in the UK, I pleaded with doctors for an MRI scan, as I had been advised. Finally, when this was undertaken it was clear straight away to the Rheumatologist that this was rheumatoid arthritis.

I was put straight onto steroids to dampening down my symptoms. Then I was then moved to methotrexate and with a few minor dose changes I have remained since.

“The difference knowing what it was and moving onto treatment was remarkable. I went from feeling like an 80-year-old to how I was when I was 24 – it was amazing!”

Looking back, I was lucky in some ways that the third flare occurred during the pandemic lockdown. Working from home at least mean there was no commuting, as my swollen knee and then back pain left me almost immobile for 7-8 months. But inactivity and being at home took its toll, “I went from fit to fat”, the weight piled on, felt miserable, isolated and frustrated with the lack of progress in finding out what was wrong with me”. I was living alone at the time and did not have family around for support when I really needed it. Once it takes hold, it disrupts all aspects of your life. The turn around once diagnosed and treated was nothing short of “light at the end of the tunnel”.

I have now found treatment that has the ability to turn people’s lives around, but there needs to be much more awareness to get people, particularly younger people, to that point much sooner than occurred to me.

With the new lease of energy and the joy of movement I was back doing runs, squats, and weight training. I also find cold-water swimming invigorating and helpful for my arthritis, I can travel and enjoy going to Scandinavia as they are really set up for that kind of thing.

My life has turned around, and I feel very positive about the future now my condition is under control. However, my wish is that others don’t have to make the arduous journey to diagnosis that I did. The current way the health system operates makes it difficult, when rheumatoid arthritis presents in so many ways, it flares then abates and there isn’t enough time for doctors to look at your full medical history, so they address the immediate symptoms instead of what is going on as a whole. That’s why I want to help Arthritis Action spread the word and improve awareness of the condition.