Nina's Story - Arthritis Action

Thinking back now, I feel like there has always been pain in at least one part of my body. It really came to a head with issues I was having with my right ankle which had been on and off for a while then became quite debilitating.

I’d seen a podiatrist, visited an osteopath for many years and had physiotherapy referrals. It was a GP in-house physiotherapist, who I self-referred to, who joined some of the dots. Having psoriasis and coeliac disease they asked if I had ever been assessed for arthritis and suggested a rheumatologist referral. I was finally diagnosed with seronegative inflammatory arthritis. This affects my ankles, but also fingers, and collarbones.

Next came the journey of finding the right treatment. This was complicated by gastric issues I have which limited my options. After working through a number of alternatives, it was a biologic treatment that proved the answer to dampening down most symptoms, helped me maintain a normal routine and manage daily life. I no longer wake up in pain and my joint stiffness is reduced.

In fact, having recently had to come off the biologic due to a chest infection, has reminded me of the impact of flares and constant pain of the past, as they have all returned in abundance.

I am an IT Consultant heading up a team. My employers would like me in the office 2 days a week, but they are very supportive if I just can’t manage this. I was open with my HR department from the start as I knew I would need their support. They have been fantastic, enabling me to see an occupational therapist, counselling, and also helped via the Access to Work scheme to provide a standing desk, ergonomic chair and dictation software. Their flexible attitude to my working from home, taking breaks to leave my desk allow me to continue my career.

I came across Arthritis Action via a counsellor at work, I had lots of information but I hadn’t been able to find a support group and I felt that talking with others in the same boat really was what I needed.

It has been fantastic meeting others like me living with arthritis. Knowing that I wasn’t being lazy, or dramatic about my situation – it was affirming hearing that. Even little things like recommending gadgets and adaptations, has all been so helpful.

I found that health professionals seemed to work in little boxes and didn’t have the time to discuss all the things I needed at my appointments. I asked about diet changes but was just told to look online. Having access to the Arthritis Action Dietitian Martin through my Membership, was amazing.

I enjoy my holidays and find that a hotter and more humid environment, plus the space to relax and pace myself is very beneficial to my arthritis. I just have to pace myself and take an extra day or two to prepare for and recover from the travel itself!

I also love walking around the open spaces in my north London neighbourhood, before diagnosis I found my routes diminishing as I could go less far without pain. Being out walking is so therapeutic for me, I clear my head, get some fresh air and see nature. It’s a big part of my life and when flares were at their worst, not being able to even get up or down the stairs made me feel so penned in and really affected my mental health.

I missed my independence, so often things I wanted to do for myself I no longer could, like changing a tyre, a bit of DIY or just cooking a meal. My hands had hurt for many years, I would be in pain and drop things. I love cooking but pans were heavy, I just felt so clumsy.

My journey to getting diagnosed has taken the better part of my life, from back pain in childhood, the ankle pain that was seen as an isolated problem and my stiff hands. It has taken a very long time for all the pieces of the jigsaw to fit together. Now that I am on the right path with my treatment and I have the knowledge and support that Arthritis Action and its groups have provided, I can be more confident about my future.