Wednesday 19 September 2018

'By the end of the day I was exhausted'

In Ireland around 915,000 people are living with arthritis, making it the single biggest cause of disability. Our reporter talks to three sufferers about their experiences

Allison Paisley developed the condition four years ago and is Chairperson of Young Arthritis Ireland. Pic: Gerry Mooney
Allison Paisley developed the condition four years ago and is Chairperson of Young Arthritis Ireland. Pic: Gerry Mooney

Arlenne Harris

The stereotypical image of an arthritis sufferer is someone who is elderly and infirm, but this isn't always the case and the condition can affect people of all ages.

There are currently almost one million people in Ireland with arthritis - 45,000 of those have rheumatoid arthritis while 1,200 children under the age of 16 suffer from juvenile idiopathic arthritis.

It is the largest cause of disability in the country and while the term arthritis refers to an inflammation of the joints, there are many different forms of the disease.

"Arthritis means joint pain and there are over 200 different conditions that cause it," says consultant rheumatologist, Professor David Kane. "Some like osteoarthritis are due to general wear and tear while other types such as rheumatoid arthritis are caused by your own immune system attacking your joints and making them inflamed. That is why it is really important to know which type you have so that you get the correct specific treatment."

Rheumatoid arthritis is one of the most serious forms of the disease and is more prevalent in those who have a family history. Professor Kane says while two decades ago, a diagnosis of rheumatoid arthritis often meant a lifetime of pain and reduced mobility, advances in medical science have made the future brighter for people with the condition.

The most common condition is osteoarthritis where cartilage becomes worn out in the joints but with a few lifestyle changes, risks can be reduced.

"There are ways in which people can reduce their chance of developing osteoarthritis which often affects the aged," says Professor Kane. "Firstly I would encourage people to protect their joints while they are exercising and playing sport and also get injuries dealt with properly. It is also important to stay fit and healthy, keep weight down and maintain a healthy diet - this will all help to keep arthritis at bay as we age.

"Giving up smoking can help to prevent rheumatoid arthritis and can slow down symptoms in those who have the condition," he added.

Brian Lynch, communications manager for Arthritis Ireland (AI) agrees and says research is ongoing and promising.

"As part of its vision to finding a cure for arthritis, Arthritis Ireland has raised €2.5m to establish two centres of research in rheumatology in Ireland - at UCD and TCD," he says. "In UCD, Professor Gerry Wilson's research interests include the genetic background of rheumatoid arthritis. He is currently undertaking research into the mechanisms linking the protein C5 or f30 with tissue damage in RA.

"While in TCD, Professor Ursula Fearon is examining components of joint inflammation at a cellular and molecular level to dissect the signalling and gene pathways that are disturbed in patients who have inflammatory arthritis and rheumatic diseases."

And in September, the Arthritis Research Coalition (ARC) biobank was launched to support research studies and clinical trial activities.

"Its primary aim is recruit patients with common rheumatic diseases and obtain bio-samples which will underpin clinical research," says Lynch. "A secondary aim is to increase national involvement in clinical trials of novel therapeutic agents. This coalition is supported by Arthritis Ireland and the Health Research Board Clinical Research Coordination Ireland."

"Adding to this," says Professor Kane. "Ireland is the most productive country in rheumatology research and there have been many advances in the past 20 years so this disease which was once extremely debilitating is now being managed to the point that patients are able to live full active lives."

One of those who suffer with the condition is Allison Paisley (31), who lives in Dublin with her partner Sean. Currently chairperson of the Young Arthritis Network, she developed the condition four years ago. Having lived with fibromyalgia for many years, she was used to pain but says this was something entirely different.

"In 2013 I started to develop joint pain and stiffness in my back, hips, knees and ankles. I was used to living with chronic pain having had Fibromyalgia for years - but these symptoms were new and different as the pain in my back made it difficult to turn in bed at night and I would wake up feeling like my spine was a plank of wood, plus my knees and ankles were constantly swollen and inflamed. A history of arthritis in my family made me suspect that inflammatory arthritis was the cause.

But I struggled for a year before seeking advice from my GP who advised me to contact the rheumatologist I had been attending for other chronic pain issues. After a six month wait I got to see her and she ordered a series of tests, MRIs and a nuclear full body scan. My blood test results indicated that there was a high level of inflammation in my body and the scans showed minor signs of inflammation in some of my joints. Her main concern was to start me on treatment to help relieve my symptoms rather than putting a name to my diagnosis. However, she said the description of my symptoms and the visible inflammation in the tests made it highly likely that I have Psoriatic Arthritis, a form of inflammatory arthritis.

Having to accept that I had a second chronic pain illness before reaching 30 years of age was very difficult. I had already made a number of adjustments to my life due to my health and I was concerned about the further impact arthritis would have into the future.

Daily tasks became difficult and painful to manage, even lifting and pouring a kettle to make a cup of tea. While normal routines such as washing and drying my hair became a struggle and I often needed assistance.

I noticed that physical activity eased some of my symptoms but, while walking the dog was helping to relieve the stiffness in my joints, the strain of her pulling on the lead would cause me to need ice packs on my swollen wrists and thumbs later on. By the end of the day I would be exhausted but would spend the night tossing and turning in pain so would often need a nap the following day to function.

I was started on a course on oral steroids to give me immediate, short term relief from the intense attack of pain and inflammation and responded well to this treatment so my rheumatologist recommended trying a medication called Methotrexate, a Disease-Modifying Anti-Rheumatic Drug (DMARD). While this is a serious medication to be on, thankfully the benefits have outweighed any unwelcome side effects.

Aside from medication I would recommend accessing additional services such as physiotherapy, occupational therapy and counselling. I've discovered that goals of all kinds are still attainable and while the road might be a bit longer, they just require careful planning and preparation with patience and self-management being the key."

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