My Journey to a Diagnosis of Psoriatic Arthritis

It’s a little off topic I know, but I had this blog on my previous website and I know it helped so many people – so I needed to include it here.

Following the birth of my daughter in 2016, something never felt quite right. My body constantly had a low level ache, and my neck constantly hurt. I put it down to the changes my body had gone through during pregnancy, the impacts of breastfeeding and co-sleeping for over a year; I just thought it was normal and at the time it was manageable.

In the summer of 2018 some of my fingers swelled, for about a week it was so painful I couldn’t open jars or do the poppers on my daughters clothes. However, after a week it subsided and the pain reduced significantly. I did visit my GP who carried out some blood tests, which all came back as normal. So again, life went on.

In January 2019 my neck pain began to increase. Every day I would wake in slightly more pain than the following day. We bought a new mattress and pillows, I started doing yoga, and I went for a massage. When none of these helped, I visited my GP again who thought I had pulled a muscle in my neck and referred my for Physiotherapy – which had a 12 week wait.

During this wait, my fingers swelled again so I returned to the GP and had further blood tests – all again coming back as normal. I asked if my fingers and neck could be connected, and was told no. I began to do my own research, and time and time again Rheumatoid Arthritis cropped up – a progressive autoimmune condition whereby the immune system attacks the joints. It has no cure, and whilst it can often be managed with (strong) drugs, it is degenerative. When I mentioned this to my GP he smirked, and told me I did not have Rheumatoid Arthritis and to stay off Google.

In the week that followed, things went from bad to worse. I was bedbound from crippling pain, and one morning woke unable to move. My husband called the 111 advice line and they sent an ambulance due to the fact I had been vomiting from the pain. I was given morphine, which gave me some relief, but I was still not given any answers to why I was in so much pain.

I went back to my GP and asked for a referral to a Rheumatologist and I was told no due to the fact that blood tests – mainly my rheumatoid factor – had come back negative. I argued that some people have rheumatoid arthritis and are seronegative – meaning blood tests come back normal – and I was still told no. I was just expected, at 27 and a mother of one, to continue like this. My mental health spiralled and I spent days in bed, feeling physically and mentally debilitated.

It was then that my lovely mum offered to pay for me to have a private rheumatology appointment, and within 10 minutes into this appointment I was diagnosed with Psoriatic Arthritis. A condition very similar to Rheumatoid, but also having spinal involvement- hence my back pain – there was inflammation on my spine. It was a relief to be told this, but also devastating.

I am now three months on; end of June 2019. Currently affected by the condition are my fingers, right elbow, right knee and my spine – the neck pain is the most debilitating and my movement is severely restricted due to it. I am taking an immunosuppressant called Sulfasalazine, which has yet to kick in. I am also on a cocktail of prescription painkillers to help me low-level function day to day.

I am due to have an MRI next week to explore the level of inflammation on my spine, and then I will likely be put on a biologic medication – an injection that I will give myself weekly. This will be to suppress my immune system and stop or reduce the progression of the condition. It comes with crappy side effects, such as having a very weakened immune system, but hopefully it will give me some quality of life back. Watch this space!

If you have a diagnosis of psoriatic arthritis then do feel free to reach out – I know how tough it can be.

I wrote this early 2020, so I promise an overdue update is on its way!