Tuesday 23 April 2019

'Doctors insisted I just needed to get fitter' - Woman (37) living with debilitating condition

Finally diagnosed with FM at the age of 34, Niamh Kane shares her journey to help others - and tells us why she remains hopeful about her future

Dubliner Niamh Kane has learned to manage her dilibating condition and vows not to let it rule her life
Dubliner Niamh Kane has learned to manage her dilibating condition and vows not to let it rule her life

There's one thing you quickly stop asking yourself when you have fibromyalgia (FM) - and that's "how much worse can it get?"

With no specialist currently practising in Ireland, as someone living with this debilitating condition you can get passed back and forth like a tennis ball between consultants before you might find one willing to help. Unfortunately, we live in an era that's got a pill for everything, but a cure for very little. Fibromyalgia being no exception, sufferers are also at a disadvantage because it can present as many different illnesses and people often see consultants in the double digits before they get a diagnosis.

Thankfully there is a strong online presence and support groups that keep us connected. Fibro Ireland (fibroireland.com) is a great resource for anyone who has or suspects they have this illness. There is no register to count the number of people living with the condition in Ireland, but the HSE estimates that fibromyalgia affects nearly one in 20 people across the globe.

FM is characterised by chronic widespread pain, nerve dysfunction and cognitive issues known as 'fibro-fog' that affect memory, concentration and speech. In its common form, it is accompanied by an accumulation of additional symptoms such as severe fatigue, insomnia, inability to regulate own body temperature and a hypersensitivity to light, sound and smells, along with other illnesses such as depression, irritable bowel syndrome (IBS), and migraines.

Myriad symptoms

While this list may seem exhaustive, it does not convey the full toll it takes on a person living with the condition. It is unfortunate that one chronic illness appears to beget another. Certainly in my case, I experience myriad symptoms and chronic illnesses alongside FM - these include myalgic encephalomyelitis (chronic fatigue), central sensitisation and chronic daily migraines.

The severity of fatigue experienced by patients is not to be confused with feeling 'tired'. It is likened to that a person might experience in an acute illness such as the flu, except that it never passes and patients are left to push through every day. The pain can vary from a burning sensation under the skin to tingling and numbing that spreads across the face and down the body. This is accompanied by a crawling sensation, stabbing hot needles and electric shocks throughout the body; you basically feel like there is a live wire loose inside your body.

Stiff muscles continue to tighten throughout the day, resulting in spasms and restless leg syndrome by bedtime. These in turn keep you awake, if the insomnia doesn't get you first. You are aching all the time but because the illness is invisible, people see you out and about and they think you're having a pain-free day, but unfortunately that's probably not the case.

Now aged 37, I've had fibromyalgia since I was a child. I was misdiagnosed after a viral infection and rapid weight gain as having a sensitivity to sugar. My parents were told to restrict my food intake and exercise me more. After activity, I would experience flu-like symptoms: fevers, chills, aches and burning pains all over. Doctors insisted I just needed to get fitter and they would go away. I rarely slept well; I used to get back up in the middle of the night and watch the shopping channel. Even from a young age, I had a maladapted autonomic nervous system that didn't allow for restful sleep.

Can you imagine being fatigued for 30 years and being told to exercise more on a restricted diet? As a child, I was miserable, especially when I had to miss quite a lot of school and often couldn't play outside. I was devastated when I had to quit art college. Inside, I resembled a cantankerous old dog walking around, trying to figure out how everyone else was doing it. I felt like a complete failure. This still haunts me because being too fatigued to finish projects is a common theme for 'fibro warriors'. I know there will be readers with FM nodding along while they read this.

I flew to India in 2011 to study Ayurveda and yoga and became a fully qualified Ayurvedic therapist. Ayurveda is a 5,000-year-old health system that offers a fully adaptable approach to living holistically. It is the sister science of yoga. It can work as a stand-alone healthful lifestyle or to complement allopathic (western) meds. While I did my best to treat myself naturally with Ayurveda and living a 100pc organic lifestyle, there was no doubt I was losing against the debt my body kept increasing and collecting. When I continued travelling after India, I would have to stay anywhere from three months up to a year in each place - I wasn't backpacking so much as bunking down and waiting for the fibromyalgia storms to pass.

I was completely deflated returning home to Dublin in 2015 without being 'fixed'. I knew I was running out of time but I still didn't know what to do. When I got back to Ireland, I hit the road hustling and got some freelance jobs. I started teaching dance classes. I also picked up work as an Ayurvedic massage therapist.

Out of my control

It wasn't long before I had to quit all of it, one after the other. Everything in my body screamed 'stop' but I was terrified to; it reverberated around my brain: "You're quitting! You're letting everyone down. Why can't you just push yourself?" My life as I knew it got slapped out of my hand like a dinner tray flipping its contents in slow motion to the floor and inevitably it was out of my control until everything hit the bottom.

I first got diagnosed with fibromyalgia at 34 after visiting a very understanding immunologist, Dr Joe FitzGibbon. He did the pressure point test and a tilt table test to look at the orthostatic intolerance (dizziness when standing up). Later I visited an endocrinologist, who said they didn't know enough about the connection to female hormones yet and that my ovaries looked well enough to have a baby if I wished (not my priority, thanks doc!).

Thankfully, I found a great pain specialist in St Vincent's Private Hospital. Dr Paul Murphy has helped me manage my pain when others wouldn't even see me. He ran a plethora of tests and designed a pain management protocol for me in 2017. He now sees me every three months to administer 31 Botox injections for my migraines, which has decreased them by up to 50pc. He is also looking at pulsed radio frequency and nerve block treatments for the chronic pain in my body, once further tests have been carried out.

While antidepressants are offered to people with neuropathic pain in the hope they will affect the neurotransmitters that control the pain centres and reduce it, I had a tough time of trial and error with these meds. I was hypersensitive to most of them. They would send me into manic states - some manic episodes I thought were great; I got lots ticked off my to-do list. But other parts were quite scary: the suicidal ideation, racing thoughts alongside audible and visual hallucinations.

This, I believe, is why it's imperative that mental health professionals be brought up to speed on all the illnesses that are being treated with neuropathic medicines. People who may not have a mental illness might still get adverse reactions to the anti-depressants they've been given for their pain and are then lost in the system of who handles the fallout.

Curb my enthusiasm

Aged 36, I was diagnosed with bipolar disorder (BD) - if illnesses earned air miles, I'd fly free for a year. Fortunately, the medication they gave me for BD has helped me; not only with the mental illness, it also reduces my anxiety around all my illnesses. Fear is a huge part of being ill. You cannot control the illness but you fight to not let it define you. Once I curbed my enthusiasm to make every day perfect, the desperation to find the panacea for my body lessened and a new normal began to emerge. I have gradually stopped looking to the extremes - acupuncture, hydrogen peroxide therapy and coffee enemas didn't benefit me much - and instead have a consistent routine, medication and Ayurvedic practice that also helps me manage FM. Meditation is non-negotiable for me as is a very gentle floor or sometimes bed yoga. I find it squeezes some of the spasms out.

It's so clichéd but gratitude has really been one aspect of getting my mind to look at all the privileges I still have in my life. If I'm still breathing, then there's more right than wrong with me in that moment. I will be forever grateful for my family's support, helping me emotionally, physically and financially through the worst of it. I'm so thankful for the people I have in my life now and I'm grateful to the ones who walked away too. I've been stripped bare but I feel more whole than I have my entire life. I may not be a success story yet but I'm quite happy about my to-be-continued…

You can follow Niamh on chronicbodylove.wordpress.com

What made a difference? My top products

Fibromyalgia is with you all the time, but certain things can help... here are my top natural products which make a difference for me.

* Magnesium Citrate (4g) daily: There are studies that show patients with fibromyalgia have low levels of magnesium. Supplementing with this important mineral can help to reduce the number of tender points associated with FM. It also aids migraines, sleep, depression and anxiety.

* Melatonin (10mg) at night: Melatonin is a neurotransmitter-like hormone that is a natural sleep aid. Those with FM often have sleep disorders. Melatonin helps to synchronise the circadian rhythm in the body and studies show it also serves as a natural analgesic. (In Ireland, you can only get melatonin on prescription from your GP).

* High-quality fish oil tablets 3,000mg DHA/1,500mg EPA daily: High doses of omega-3 fatty acids normalise microglial function and inflammatory states within the brain associated with the cognitive dysfunction (fibro-fog) of FM.

* CBD oil 1,500mg, 3 drops + as needed: While most claims for fibromyalgia and migraines are anecdotal at this point, many people find Cannabidiol (CBD) can help to reduce their pain as well as anxiety.

* Vitamin D 5,000UI in summer/10,000UI in winter: Vitamin D helps the body's immune system work properly and neurological functions, reduces inflammation, and assists calcium absorption.

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