Fiona's story: Waiting years for an arthritis diagnosis

Fiona Scott, 65, West Lothian spent over a decade going back to the GP with joint pain, convinced, due to a strong family history, that she was suffering psoriatic arthritis but being told blood tests were negative. By the time she was eventually diagnosed she had additional health issues, including osteoporosis and fibromyalgia which, combined, have severely impacted her life.

Delayed arthritis diagnosis forced an early retirement

I had an itchy plaque on my scalp from my teenage years which doctors put down to cradle cap. Then, throughout my 40s, I kept going to the doctors suffering joint pain. I thought it was psoriatic arthritis because my mother, grandmother, great grandmother and siblings have it, but my GPs said it was seldom hereditary and blood tests were clear. They told me it was ‘wear and tear’ so I just put up with it.

As time went on they blamed my depression and obesity for my symptoms which I know happens to a lot of people but I believe both were to do with my condition. I used to love going for big walks, I loved dancing so much I was always the first one up at a disco and the last to leave. Joint pain meant I couldn’t do those things anymore, I couldn’t go to the gym anymore. At one point I did lose a lot of weight but the pain was still there and I ended up putting it on again because I couldn’t be active.

I still worked and really enjoyed it, I found it kept my mental health stable. I worked in social care, then in occupational therapy but lost both jobs because of my health. The last job I had was as a community safety advocate with Scottish Fire and Rescue Services, going into schools to teach children about safety and doing home safety visits which included installing fire alarms.  I absolutely adored my job but it did involve carrying heavy equipment to visits and tackling lots of stairs as Edinburgh has a lot of tenements so, in the end, I had to retire at 59 due to ill health. 

Arthritis community feel ‘invisible’

In 2019 I was finally diagnosed with psoriatic arthritis. I saw a locum doctor in 2018 and she referred me to a rheumatologist straight away. I felt angry but vindicated because I think I actually believed at times that I was a hypochondriac.

Three years ago they diagnosed osteoporosis and two years ago ‘severe’ fibromyalgia. I had asked my GP previously about fibromyalgia but been told I hadn’t got it. I could barely get up the stairs by that point, I can’t bring myself to even consider what a difference early diagnosis would have meant.

I feel trapped and depressed and I know that situation is not unusual in the sphere of arthritic disease.

They gave me methotrexate and sulfasalazine at first, since then they’ve tried several biologics but they haven’t helped and I do wonder if it’s just too late. I try and be optimistic with every medication then end up getting disappointed but I have to keep hoping, have to try and stay positive.

GPs need more training around arthritis

Arthritis has impacted my physical health, my mental health, my work, my finances, my social life and the lives of my family. My husband is supportive but he’s had cancer himself. I feel so guilty because we used to do so much together, go for walks, go on holiday every year and I can’t do any of that now.

I do think that there are diseases and conditions that are more visible, more high profile and that’s why raising the profile of arthritis is so important, to try and get more help. 

There is a lack of understanding about the impact of arthritis and how can we expect the government to understand when so many GPs have no idea, look how long it took me to get treatment and I know I’m not the only one.

The Government needs to start by helping GPs get the training and experience they need so they can recognise these illnesses. Making people wait for referrals and diagnosis only costs more money in the long run with medication and surgery that might have been avoided.