It Was a Relief to Finally Have a Diagnosis But Where Would I Go From Here?
Meet Deirdre Ryan
Deirdre Ryan is a Governing Body Member of Chronic Pain Ireland and a Fibromyalgia and Rheumatoid Arthritis patient herself. We got in touch during the preparations of a joint webinar on Chronic Pain and access to new treatments, powered by FindMeCure Foundation and Chronic Pain Ireland.
We were amazed to hear how she found her own way to shift her role from being a victim of Chronic Pain related conditions to resuming life as a person who functioned. And here comes her story.
– How did it all start?
My journey started when I was 25 with a very gradual dull pain in my lower abdomen and groin. At that time I was an active and busy girl, I danced salsa, worked out, traveled, and worked for an insurance company. All my blood tests were clear including the X-ray but the pain was getting sharper and didn’t ease without analgesics.
When the fatigue set in, every single movement was an effort and I began to ache. My bone hurt and I was sensitive to even touch. I developed allergies to pollen and animal dander, and new sensitivities to certain odours. I was diagnosed with Irritable Bowel Syndrome, lost weight and no matter how much I rested or slept I never felt refreshed. The pain, which was dull, was now sharp and doubled.
– What other tests did doctors do to get to the diagnosis?
Test after test: laparoscopy, endoscopy, colonoscopy, barium X-ray, MRI, CT scan, I was scoped one end, then the other. Doctors were saying “There’s nothing apparent, except the IBS, you should be fine”.
I was far from fine, no smiles, no laughter. I took painkillers, slept, ate a bit, took painkillers, faced having a shower, worn out from the effort of getting back into pajamas. My mom often put on my socks, and dad tempted me to eat.
– Did you try alternative therapies?
I tried 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.
– What was your reaction to such a diagnosis?
I was devastated. 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. I know now that was important because depression can affect the course and prognosis of chronic pain and this is often missed. My psychiatrist confirmed that I had good insight and my pain was very real, the depression was as a result of my persistent pain.
– And there were more surprises after that…
I visited 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.
– How do your family and friends handle your situation?
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.
– How did your mission to find a path to wellness begin?
I joined Chronic Pain Ireland and attended a self-management workshop. 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 every day and worked on from there. 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.
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In recent years I have repeated the self-management workshops with Chronic Pain Ireland and I exercise pacing every day. I have participated in programmes like art therapy and gratitude journaling. I try to eat well. I learned 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.
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.
– What would you tell to people out there?
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 is 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.
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’.”
– Have you ever thought about joining a clinical trial and what is your opinion about clinical trials being a treatment option?
I was under the misconception especially at the beginning of my journey with Chronic pain that clinical trials were only for drug treatments. As a member of Chronic Pain Ireland, I would often receive requests to participate in research in relation to psychological approaches or assessments into perceived burdensomeness or catastrophising etc. I didn’t consider these as clinical trials but I understand now that they are. Living in Ireland I also would hear about trials in other countries but travel was too draining for me at that point. Now, even if I am not eligible for a trial I still find it heartening to see all the hard work out there to better understand my condition. I feel part of an international community striving to better understand and alleviate Chronic pain for all patients.
At no point in my treatment has a G.P., consultant, specialist, or other health practitioner suggested looking into clinical trials. This needs to change, I can understand clinicians don’t want to evoke false hope but patient input is the key to effective research and treatment advances. This needs to be addressed politically and within the healthcare system, not just for chronic pain.
– You’ve recently implemented FindMeCure search widget on Chronic Pain Ireland website where patients living with any type of pain can easily search and find clinical trials and get connected to the medical team running the study. What is your opinion about this new possibility for patients and the search itself?
While delivering CPI’s self-management talks the most frequent remark in relation to clinical trials is ‘I had no idea so much was being done!’ By providing the widget, and hopefully guiding people through the process with the webinars, people living in Ireland with Chronic pain can at least see what’s happening internationally, track trials, and at best participate. Chronic pain is extremely isolating, while we wouldn’t wish it on anyone it is a relief to see that we are not alone.
If you are also experiencing any kind of chronic pain, you can search the nearest to you clinical trial at www.findmecure.com. Just type your exact condition and age.
Start by asking your doctor about it or do your own research.