Catrina's story: Delays and inconsistency in arthritis care

Catrina Kivlin, 66, from Perth, has osteoarthritis, Ehlers Danlos Syndrome (EDS) and fibromyalgia. She’s found inconsistency in care means she doesn’t always get the help and support she needs to manage her conditions.

Long wait for arthritis diagnosis 

Looking back, I was always hypermobile as a child so when I was diagnosed with EDS three years ago it made sense. I’d started with painful joints when I was around 40 but the GP dismissed it as ‘getting older’, it wasn’t until I finally got an x-ray and MRI at 55 that I was diagnosed with osteoarthritis. They never offered me any support.

The pain got worse and then started in my knees which I was told was degenerative osteoarthritis. Since then I’ve had a few operations on my hands for De Quervain’s which affects the thumbs and wrists. I’ve had steroid injections and they are considering a trapeziectomy to remove bone because they think hypermobility means a joint replacement won’t work for me. I’m on codeine phosphate for the pain and I eat well, take turmeric and I cold water swim year round which takes away the pain for about five hours. I’ve been doing it for five years, swimming in the sunshine and the snow, and really feel the benefit, it’s been absolutely brilliant.

No consistency of care

In 1985 I had a really bad dislocation in my knee which meant a brutal operation but it worked. My knees are now swollen and painful again and the GP can only give me steroid injections. They’ve said I have to see a physio before they will refer me to an orthopaedic surgeon even though physio hasn’t worked for me before. They just gave me exercises which I did every day for six weeks and I’m still in pain. They’ve now given me inserts for my shoes which, I’ve already tried, and it’s just caused more pain.

Thankfully I saw another doctor recently who was sympathetic when I told her I can’t walk, and she’s referring me to a surgeon. She also gave me lidocaine patches which have been brilliant. I think the care you receive depends on the doctor you see, what their speciality is, what their outlook is, there doesn’t seem to be any real clarity.

Arthritis impacts all areas of life

The impact of these conditions is immense, constant pain and I’m always tired. I work part-time but find myself having to do nothing Friday to Sunday so I can recover and be ready for work on Monday. I love my job as a lab manager but it’s no way to live. I’m physically and mentally drained.

It also impacts my home life, especially if I have an episode of fibromyalgia, my husband has to help me, especially up the stairs. We’re actually looking at moving somewhere on one level now.
There are so many people forced to live with these conditions and I don’t think politicians really understand the impact, I can’t open a jar, I struggle to walk. I’ve got a disability badge and sometimes feel people judge because I look okay, but they don’t know what’s going on in my body, in my head.

People with arthritis need to be heard

The Government needs to listen to what people need. I think pain relief is the biggest thing because with the right medication we could live a more normal life, I’ve got patches now which is great because before I couldn’t drive on the medication I was given which meant I couldn’t get to work. They need to put money into research because there are many people who want to work but can’t. They need a strategy. 

It’s all about them having an understanding of what’s needed and they need to listen to the people who know, the medics, charities like Arthritis UK and people living with these conditions.

I saw an ad for an Arthritis UK trial a long time ago and signed up to monitor my pain on an app to see if it was affected by the weather, then I went on the website and found information, I also get emails with tips and clips to improve lifestyle. I went to London as part of a committee of laypeople giving feedback to doctors and researchers, I’ve also been involved in clinical trials for other organisations.