Sarah's story: Arthritis UK became my lifeline

Sarah Ennis, 42, from County Down in Northern Ireland, spent two years suffering pain and a fatigue that left everyday tasks feeling like ‘climbing a mountain’ before she was finally diagnosed with rheumatoid arthritis and fibromyalgia. Feeling unsupported and alone she says Arthritis UK became a lifeline.

Almost two years wait for a diagnosis of rheumatoid arthritis

I woke one morning in 2022 unable to get out of bed, the pain and fatigue were terrible. I went to the GP to be told I needed to lose weight, eat better and do some physio exercises, it was quite dismissive.

The pain and fatigue only got worse, and I felt like I had a fever.  I remember sweating as I walked to work in January even though it was snowing. It got to the point where I was so exhausted I’d be in bed by 6pm but, even then, I didn’t sleep well because the pain in my neck, shoulders, back and hip was so bad.

Then I started with pain in my hands and, as a PA who needed to type, it meant I couldn’t work and, by this point, the fatigue was terrible, I was exhausted all the time.

I went back to the GP who said that, as I was persistent, they’d do further tests which showed my CRP and white cell levels were raised so I got a referral to rheumatology three months later in June 2024 where a CT, MRI and PET Scan showed inflammation in my shoulders and neck and I was diagnosed with rheumatoid arthritis. It was a relief to know what was wrong and that there was treatment available but scary because arthritis is unpredictable and I worry what the future holds.

I was referred to a pain clinic where they suggested lidocaine infusions which I still have twice a year to dampen the pain and give me more mobility. The rheumatologist also put me on methotrexate which took a few months to work and I recently started on sulfasalazine too which seems to be helping. 

Arthritis fatigue was shocking

The fatigue was unreal and really affected every single part of my life, just getting dressed left me exhausted. I had to sit down to wash the dishes and, some days, had to choose between washing my hair or doing the laundry because I couldn’t manage both in one day.

At one point I wasn’t getting more than four hours broken sleep a night and could barely function but, before diagnosis, didn’t feel I could call in sick at work because I didn’t know what was wrong. I had to give up my hobbies, I was forgetting things and everyday tasks became like climbing a mountain. I'm stubborn, so I kept going instead of resting but the harder I tried the more difficult it got.

I’ve had to learn that I need to help myself, not to panic if the house is a mess or I need to cancel plans. Asking for help is still hard but I’m learning not to feel embarrassed or ashamed and trying to remember that I can still have a good quality of life as long as I make sure I’m looking after myself.

I try and do what my body needs but frustration and anger can get overwhelming at times and it only makes symptoms worse.

I had to take seven months off work but I’ve been back full time for a year now and they’ve been supportive, letting me work from home one day a week which really helps with fatigue.

Vital support from Arthritis UK

The doctor didn’t initially tell me I had arthritis, just gave me a booklet from Arthritis UK and said nurses would call the following week to talk about methotrexate but nobody contacted me and I felt very alone and frightened. I work for the NHS and it was disappointing that there was no support.

Arthritis UK became my lifeline, I went on the website because I felt depressed and anxious and there I found the helpline number which led to Karen from the local Arthritis UK support group calling me and talking me down when I felt so lost, she put me in touch with the support group and found me a place on a managing pain course which was all exactly what I needed because everyone understood how I felt. I hadn’t realised until the end of the course what a shell I’d become, my life had become very small and that course helped me improve my confidence, learn techniques and feel I wasn’t alone.

Last year I became a volunteer with Patient Voice and it’s been a brilliant opportunity for me. People go to the doctor and get a 10 minute window, Patient Voice helps us to try and get doctors to think about the person behind the diagnosis. I’d say to anyone newly diagnosed, you are not alone in this and there is no reason you cannot have the life you want, you just have to adapt, to rest, to plan, and sometimes just sit down and have a cup of tea.