Friday 20 October 2017

'I went from being a salsa dancer to someone who couldn't put on my own socks'

With 13pc of the Irish population affected by chronic pain, Deirdre Ryan sheds a light on what it's like living with fibromyalgia and rheumatoid arthritis

Deirdre Ryan has lived with fibromyalgia and the many setbacks it brings since she was 25. Photo: Colin O’Riordan
Deirdre Ryan has lived with fibromyalgia and the many setbacks it brings since she was 25. Photo: Colin O’Riordan

This is not a sob story, I'm not trying to get your vote, or win The X-Factor. My story is one of hope and resilience. My journey started eight years ago when I was 25, with a very gradual dull pain in my lower abdomen and groin.

I was an active, typical 25-year-old. I salsa danced, worked out, travelled, and worked hard in an insurance company. I thrived on being busy and social. All my blood tests were clear, an X-ray was clear, and yet the pain, becoming sharper, didn't ease without analgesics.

Then the fatigue set in, a wash of lethargy that swept over me like a black glue where every movement was an effort and I began to ache. A bone ache deep in my joints, I was sensitive to even touch. My whole system went haywire.

I developed allergies to pollen and animal dander, and new sensitivities to certain odours. Irritable bowel syndrome (IBS) ensued, weight loss, and non-restorative sleep came next. No matter how much I rested or slept I never felt refreshed. The pain, which was dull, was now sharp and often had me doubled over.

Test after test; laparoscopy, endoscopy, colonoscopy, barium X-ray, MRI, CT scan, I was scoped one end, then the other. I restricted my diet: doctor after doctor, "There's nothing apparent, except the IBS, you should be fine".

I was far from fine, my smiley face now expressionless; there was no laughter. My world shrank to a track from bed to couch. I took painkillers, slept, ate a bit, took painkillers, faced having a shower, worn out from the effort of getting back into pyjamas. Sometimes I would have a medical appointment. My mam often put on my socks, and dad tempted me to eat. I tried everything and anything; yoga, physiotherapy, osteopathy, acupuncture, massage, dry needling, restrictive diets. Numerous candles were lit. Then after waiting nine months, I saw a specialist who told me that all my tests were clear and it was only bursitis. I was devastated.

My GP knew it wasn't bursitis and tuned in to my drop in morale. I wasn't depressed at the beginning, I had energy to fight. The struggle to feel better and comprehend what was happening wore me down, and I was referred to a psychiatrist, which I know now was important because something like depression can affect the course and prognosis of chronic pain and this is often missed.

I was lucky my GP recognised it, but it did feel like I was being told 'it's all in your head'. My psychiatrist confirmed that I had good insight and my pain was very real, the depression was as a result of my persistent pain.

The shining light came in the form of a rheumatologist who found there was something wrong with how my hip functioned. He ordered an MRI with contrast and an image-guided steroid injection into my hip. I resumed physiotherapy and was referred for hydrotherapy.

Eventually an orthopaedic surgeon resurfaced my hip. The sharp pain in my groin was gone, but I was left with the ache in my joints, sensitivity to touch on certain points of my body, and the fatigue. Subsequently I was diagnosed with fibromyalgia and sero-negative rheumatoid arthritis, and prescribed the relevant medication. It was a relief to have a diagnosis but where would I go from here? Is this it?

Fibromyalgia is a neurological hypersensitivity syndrome resulting in over-activity of the sensory and autonomic nervous pathways. Symptoms include widespread chronic pain and sensitivity in tender points on the body, cognitive dysfunction or 'brain fog', fatigue and poor quality of sleep. A flare is when the symptoms are exasperated.

For me this usually means increasing my medications and doing less. Flares can last anywhere from a few days to a few weeks.

From that point the mission to find my own path to wellness began. I became a member of Chronic Pain Ireland and attended a self-management workshop. At first, I was extremely resistant to the possibility that there were some things I was doing every day that were contributing to my pain.

I dismissed pacing and routine. In 2011 I began cognitive behavioural therapy (CBT) and examined my thought processes and the way I was living. We set goals beginning with getting out of bed everyday, and worked on from there. My role of victim shifted to resuming life as a person who functioned. The biggest hurdle was losing the fear of the pain. I was terrified to do things in case it made the pain worse. I am on the perpetual hunt for more tools to help me live well.

In recent years I have repeated the self-management workshops with Chronic Pain Ireland and I exercise pacing everyday. I have participated in programmes like art therapy and gratitude journaling. I try to eat well. I learnt Yang-style t'ai chi and strive to practice it every morning - the standing meditation helps me focus for the day ahead. The most recent course - autogenic training - uses simple mental exercises to tap into the autonomic processes in our bodies using the brain's plasticity to restore our system back to normal functioning.

I'm still learning and practising, and hope it can help me sleep better and experience less pain.

I have been incredibly fortunate to have the understanding and support of my family and friends. At times I failed to recognise how difficult my illness is for them. It is painful to see someone you love suffer when you've only seen them thrive. But when you're awake at four o'clock in the morning in pain, it's difficult to appreciate the support around you. I especially find it difficult to ask for help, but flares have taught me that I need others, and their assistance, to move through difficult periods.

The voyage through pain and depression to living well is a very personal experience, and specific treatments that worked for me may not work for someone else.

Something that a lot of people in pain find difficult are the random recommendations from family or friends of what helped others. Even the remark 'you're looking well' while sincere, can be perceived to mean there's nothing wrong with you. Remember my appearance is not indicative of a life in pain and fatigue, it's invisible.

I do think as a society we expect disability or dysfunction to be obvious. The 'mypainfeelslike...' campaign has compiled a list of 10 things not to say to someone with chronic pain, watch the video on mypainfeelslike.ie.

Currently, I'm studying part-time to become a psychotherapist and I'm loving it. The experience of the past eight years will aid me in becoming a compelling therapist. I also volunteer and have learned to drive. I'm grateful for every new day and life is worth living.

I still experience flare-ups and there are challenges, but I have the tools to cope and am ever willing to upgrade my toolbox. There are times when my skills slip and I lose track of what's happening physically, or I don't pace myself and it impacts on the pain. Stress, especially with college, can trigger a flare if I am not mindful.

I know I'm not alone, research has found that 13pc of the Irish population and 27pc of Irish households are affected by chronic pain. I would encourage anyone on this journey to be their own advocate and fight. Exhaust every avenue you can, because no one else will do the work for you. Remember, as Mary Anne Radmacher said, "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow'."

* For more information on chronic pain, go to mypainfeelslike.ie and complete the pain questionnaire to help you communicate your pain to your healthcare professionals

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