The Fibromyalgia Road Map
By Madeleine Sara
All new experiences are like a journey. As we travel through unknown territory, we should keep in mind that since others will have taken this road before us, being able to benefit from their resources and experience, empowers us to better navigate our symptoms. Every aspect of Fibromyalgia has a number of triggers and approaches that can improve or worsen those symptoms.
Using a self-care map helps us meander towards better respite from the commonly reported aspects of the condition. Steering us away from the role of passive, medicated passenger (with persistent symptoms), we may use our own personal self-care toolbox to resume the active role of driver in our own lives, once more. With self empowerment comes hope, improved mental health and energy. Things for us may be different than they have been but we can feel more in control of the journey and the route we navigate to better health.
So where do we start?
In my many years of managing the condition, I have come to accept that the most valuable tools for a smoother journey around the symptom roundabout are:
Good nutrition
Exercise
Stress and lifestyle management
Sleep quality
Pacing
Keeping the brain active and alert
Like Newton’s Cradle, these aspects all have a knock on effect with one another in the way they affect our symptoms.
Nutrition
This can be an emotive subject, because so much of what we eat may be associated with mood, social experience, self image/ weight and preference. To be clear, I’m not talking ‘dieting’. This self-care tool involves long-term, healthy eating for symptom relief. It’s possible to educate our palate to enjoy different tastes, with perseverance and commitment. Healthier foods and drinks that I’ve found unpleasant and ‘foreign’ to my taste buds, have now replaced my previous unhealthy choices as favourites. Over the years my diet has changed from unhealthy, processed/ convenience foods that were high in bad fats, sugars, caffeine and chemical additives, to a diet that is high in wholesome nutrients, fibre, pre and probiotics; providing better hydration and health. This healthier diet, provides those all-important gut microbiota, the environment to thrive and digest my food, that the unhealthy diet had been depleting, over the years.
I won’t pretend the journey hasn’t been full of potholes and wrong turns. Over the years I began to learn that when I eat something good for me, from the moment I swallow I don’t feel that characteristic discomfort. Fibro fatigue and brain fog have also lessened. To consume unwholesome food, now seems as unwise as putting diesel fuel into a petrol engine. However, whenever I stray, the moment I swallow, a fight ensues, as the unnatural ingredients bully and bulldoze their way through my alimentary canal and down to my gut. I can then feel as bad as if I’ve been poisoned. It takes at least 3-6 weeks to re-educate our taste buds and set up healthy eating preferences. Indeed, there is always a transition period, as we scale back old habits to make way for new regimes.
Irritable Bowel Syndrome
Irritable Bowel Syndrome (IBS) a common symptom in Fibromyalgia and can result in 1: constipation, 2: diarrhoea or 3: a combination of the two. Before I took control of my diet, I suffered as a 3! This made meals out and socialising a nightmare.
The Mediterranean and Blue Zone diet regimes proved to be the best at managing these symptoms and are regarded as among the healthiest.
Recommended resources:
The Fibro Food Formula: A Real-Life Approach to Fibromyalgia Relief by Anna Walker, Ginevra Liptan.
Deliciously Ella: 100+ Easy, Healthy, and Delicious Plant-Based, Gluten-Free Recipes by Ella Woodward
The Clever Guts Diet: How to revolutionise your body from the inside out by Michael Mosley
The 8 week blood sugar diet by Michael Mosley https://cleverguts.com/clever-guts-diet/
Irritable Bowel Solutions by Professor John Hunter
Exercise
I’m not talking strenuous workouts here. Keeping active with gentle exercise, including Yoga, Tai Chi, warm water aerobics, walking, table tennis and line dancing are all great work-outs for mind and body, as well as muscle flexibility/ strength and balance. Exercise improves digestion, sleep, balance and brain function and helps minimize stress. I certainly get very stiff and in pain if I don’t move regularly throughout the day.
Recommended resources:
Toothbrush exercises; Resistance and strengthening; Balance and core strength www.bbc.co.uk/programmes/articles/1wBY4y9KMwy02YjVSMhTfBt/can-i-get-stronger-without-going-to-the-gym
Stress and Lifestyle Management
Modern society seems to allow very little respite from the frantic chaos noise and glare of everyday living. We are constantly bombarded inside and outside the home. There is no time to sit and reflect, soak up the quiet and tranquility of nature; enjoy a simple cup of coffee with family and friends, without social media, emails, texts, phone calls constantly intruding. These days, most people seem unable to walk or drive without a mobile phone fastened to their ear, despite the risks. A simple news interview will be ambushed by two rows of ‘Breaking News’ and ‘News Headlines’ tickertape distractions; plus details of the interviewee and reminders to ‘press green button’ to start programme from beginning or ‘red button’. Concentration is a hard fought battle in 21st century living. Learning how to relax appears to be a skill that many young people have been denied.
So if you writhe with impatience during a meditation session, you know you’ve got a problem. If you cannot sleep because anxious thoughts cycle round your mind over and over, then Meditation and ‘Pink Noise’ are things you badly need to embrace. Whatever is causing us stress in our lives needs to be addressed in some respect, to facilitate better relaxation and peace of mind. Knowing we certainly need not justify our symptoms to everyone, is part of that healing journey.
Recommended resources:
Mindfulness a Practical Guide to Finding Peace in a Frantic World by Mark Williams and Danny Penman. (2011 Piatkus)
https://relaxingwhitenoise.com/ (pink noise relaxation)
Restorative Sleep
It is so important to our overall wellness. The less sleep we get the more pain we feel (leading to painful, weak muscles and stiff joints and more susceptibility to lower pain tolerance /allodynia) and feel less inclined to exercise. Other symptoms include: fatigue, stress, depression and anxiety, brain fog, irritability, and low concentration levels, low oxygen intake, clumsiness poor food choices and sluggish digestion. So if you are not already implementing the recommended ‘sleep hygiene’ advice, it’s probably time to do so.
Recommended resources:
The Sleep Book: How to Sleep Well Every Night Paperback – 13 Feb. 2014
by Dr Guy Meadows
The Fibromyalgia Magazine UK– April 2019 Yawn, Yawn! by Madeleine Sara
Tart cherry, kiwis increase melatonin levels for improved sleep
Pink noise improves restorative sleep.
Calm by Ferne Cotton 2017 Orion Spring publications
Pacing
Think of it as the rest stops on the journey. Too much activity increases the likelihood of symptom flares, just as not enough activity makes us seize up and become more stiff and in pain. Consequently, taking time out for quiet rest and relaxation away from devices, commitments and social interaction, as well as gentle exercise, is recommended.
Recommended resources:
https://www.nrshealthcare.co.uk/articles/condition/fibromyalgia
The Fibromyalgia Magazine UK– June 2019 Bad Flare Days by Madeleine Sara
Keeping the Brain Active and Alert
Brain fog is a scary and debilitating symptom of Fibromyalgia. Sleep, good nutrition (including good fats, protein, fish oil, dark chocolate and coffee) all improve brain performance. Exercising the brain with crosswords, sudoku and memory puzzles, plus any activity that provides new challenges for the brain are another recommendation. Bad fats, sugary processed food and drinks all encourage brain fog and memory issues.
Recommended resources:
The Alzheimer's Solution: A revolutionary guide to how you can prevent and reverse memory loss (2017) by Dr. Dean Sherzai & Dr. Ayesha Sherzai
The Organized mind by Daniel Levitin 2014 (Penguin books)
On those rare good days it can seem as though the Fibromyalgia isn’t an issue. However, as it is a chronic condition, the symptoms will likely return following poor sleep, too much activity, an unhealthy meal, or a stressful situation that particularly pushes our ‘red alert’ buttons.
This chronic, as yet incurable condition requires constant, careful maintenance. Even with good care regimes, most days, we can be so swamped in fatigue, fibro-flu, pain and discomfort that everything slows right down and our self-care routines are put on hold, until we have the energy to resume them.
It goes without saying that when we are feeling unwell, every cell in our body seems to scream “Please, no more!” Addressing the things that increase our health and overall wellness will fortify our bodies, to handle any detours and potholes we encounter, with greater resilience. Good fuel, provisions, company, maintenance and rest stops are all important factors on this restorative journey to wellness. Symptoms can improve when we are ready to embrace these self-care challenges on a daily basis. Until then, we must remember to just BE KIND TO OURSELVES!
Madeleine Sara is a freelance writer with a degree in Psychology and a postgraduate RCSLT qualification. As a retired, Paediatric Therapist and fellow Fibromyalgia sufferer, she likes to apply her experience and knowledge to every challenge she encounters.