What is Fibromyalgia?
Article by Julie Clark.
Fibromyalgia is a condition of the body that can be very difficult to treat. It is one of those conditions that can live with you for a long time, like it has with me.
Fatigue comes with fibromyalgia, and can also be a feature of ‘Epstein-Barr virus’ (EBV), which is often caused by burnout or overwork. EBV infections are very common. In Ayurveda, the sister science of yoga, it’s classed as a low grade infection caused by a depleted immune system. Back in my flying days, my immune system was definitely depleted, but I’d also had brain surgery and was taking lots of different medications. At the time my immune system was shot to pieces.
Epstein-Barr virus (EBV) can occur in people of all ages, but 50% of children under 5 may carry EBV and it is almost always dormant. In the past decade, GPs are also finding that more people are being diagnosed with Chronic Fatigue Syndrome (CFS), with symptoms of low grade fever, mild thinking dysfunction and lymph node inflammation. EBV is sometimes called CFS but the symptoms are not always the same.
If you have fibromyalgia, you need to find somebody (a rheumatologist), who really understands this condition. In my experience in Australia, I was able to find a doctor in the John Hunter Hospital, Dr Stephen Oakley. He’s a specialist who really understands fibromyalgia complexities and how to self manage. There's many ways I've been able to manage my fibromyalgia since leaving the airline many years ago. The story starts with how I got the diagnosis.
How did I get it diagnosed with fibromyalgia?
Getting a diagnosis takes you to an area where you can work up from. It provides a flat foundation to build on. Without a diagnosis from a doctor or specialist, we can go around in circles… Using different types of alternative medicine... Spending sooo much money (thousands of dollars!) on different, promising therapies.
I went to see my GP, who referred me to a specialist. I highly recommend doing this if you have symptoms. I know many women who have fibromyalgia; who have been feeling so tired, so, so tired. They just can’t get over how they don’t know how or where to look for answers. But the thing is, once we know what fibromyalgia is, we can begin to understand the symptoms, and start to change our lifestyle. We can look at the symptoms as they come up, because the symptoms come up different each time.
Living with fibromyalgia
It’s really interesting to see the differences between daily management, self management, emotional, physical, mental and also spiritual pain when living with fibromyalgia. There’s no pill that makes the symptoms simply go away.
Once diagnosed, I had to decide what I wanted to be. That was the most important thing in my life I needed to change – to know what I wanted to be.
- Julie, a human being
- A mother
- A wife
But I was also someone who had their role in life taken away from them. I’d lost a job I’d loved at the airline. All of a sudden I seemed confined to a life of pain. I wanted to live my life to the fullest, but seemed to be battling brick walls every time I wanted to do something “for me”. You know, a daily walk, meet up with a friend for lunch. I just didn't have the energy.
The psychological effects of fibromyalgia come into play here. This is where you need a doctor’s or an allied health professional’s opinion and support.
I knew I had to make some changes in my life and walk towards becoming healthy. I had to start thinking about all those people who had played a part in my life up to the diagnosis, and who had helped me. I also had to think of those who had not served me well – and let them go. I achieved this through a series of various styles of mindfulness and meditation techniques that I’d learned over the last 20 years.
One thing that kept coming back to my mind during this time was how much I LOVED music. Being from a family of musicians, I was always the one, the youngest of the family, who really wished they could play something.
That got me thinking about something a gentleman said to me not too long ago:
“You know that you bring music to people’s lives? You bring harmony.”
Let's think about that concept of bringing harmony for a moment.
Can forced harmony be harmful?
Harmony for me means bringing people together. I've always been a people person. I have a really strong desire in my heart to make people feel safe, comfortable, warm and create companionship. I was trying to bring that to life every day… But I was actually making myself sick doing it. Yet, I think I had to go down that path to learn how to manage my fibromyalgia.
I am experienced in living with fibromyalgia and chronic fatigue (which has been with me since 1993, as far back as I can remember). Fatigue is a large part of fibromyalgia. Peripheral surface pain is another symptom. I’m no specialist, I’m only talking from experience of living with both, which sometimes blend and have crossovers.
I have used lots of meditation and quiet time since my brain surgery to quieten down my mind and bring things back into balance – by this I mean purely calming down those synapses in the brain. Letting them rewire.
Reboot. Reinstall a sense of stillness.
An alternative way to look at fibromyalgia
We are all human, so we naturally dream. Dreams of aspiring to be something. To cross a road we've never been down before. To work somewhere new: “I aspire to work in a team of people once again”, for example. But if your body, mind and spirit are not ready for that dream – it won’t happen. Fibromyalgia gives us a message to just be calm, content, and relax.
Feel into the systems of your body and seek advice from the professionals. Allow them to do their work. Allow them to give you medical support when needed – especially if chronic pain sets in. And you probably need rest. Good rest. Pushing pills down your throat won't be the right answer. The answer is often simply hidden somewhere else within your system: within your thoughts, or the way they are driven? Your self esteem? Weight loss? Where have you gone? What is happening to your body?
Just remember you’re still in there. You’re still very able.
I see fibromyalgia as an opportunity to literally help other people. It is a path to address diet, mindset and your own physical ability. I knew I needed to make changes, as I have suffered chronic severe arthritis in both hips, but I didn’t always understand that pain. I dabbled and researched and did all the typical things people do when they look at natural medicine. But trust me – you need your doctor.
Right from my heart: Go straight to your GP
In 2012, I was diagnosed with mild osteoarthritis and now it’s chronic. I did everything imaginable with natural medicine. Bought every tablet, pill, potion or remedy. Believe you me, I've tried it all! It’s unfortunately common for people to throw tens of thousands of dollars down the sink.
But the truth is your mind controls everything. Allow yourself to:
- meditate daily: one two or even three times a day
- have a rest like a baby, an afternoon nap
- try Yoga Nidra
- be nurtured by your family
- let people help you
- ask for help
- not be stubborn (it’s part of the condition)
- let things go that no longer serve you
- self love
Most of all, wrap yourself with a beautiful colour and know the importance of self love.
Do you focus on self love regularly?
There’s so many changes I've had to make in my life as I've travelled through. Many a young yoga teacher gives advice on conditions such as fibromyalgia, but they may not have actually experienced it. It is wonderful to gain advice from people, but always make sure you take it from professionals who have completed the relevant degree to be advising on such things.
Communication (especially with yourself) is the key to getting the healing process activated.
Your healing from fibromyalgia will be gradual. Don't look at weeks or mere months. It may take you 3, 4, 5 months to a few years to heal. It depends on where your mind is at. The more I began to research and find answers to why my body and mind were feeling certain ways, the more I simply wanted to know WHY.
Fibromyalgia: How to heal your body & mind
Fibromyalgia has become more prevalent in recent years, along with some of the therapies that can be used to treat it. This includes yoga postures and treatments including using warm oil, or Mahanarayan Oil, for pain on the surface. There’s also Shirodhara and Abhyanga warm oil therapies that can be part of a whole body massage.
It's important to find a massage therapist trained in these therapies, as a remedial massage therapist may not understand the surface pain of fibromyalgia, or how deep it goes into the nervous system. They might, but finding a good Ayurveda massage therapist, practitioner or doctor and being guided by them is the best move.
Some other treatments I've used include:
- Natural herbs i.e. Ashwagandha
- A rostrum liquid - delicate, small amount taken daily for a delicate system, little and often.
- Western medicine alongside these
For Epstein-Barr Virus, you can look to Ayurveda, the sister science of yoga. We recommend a two-fold therapeutic approach: some immune-busting herbs, like shatavari, as well as some other recommended herbs. Seek advice from an ayurvedic doctor, as this is not something to get over the counter. And always refer to your health care practitioner.
To reduce infection, concentrate on ways to reduce heat in the body. Practices should aim to cleanse the blood, clean the liver, the gall bladder, the spleen and the lymphoid system. There’s a multitude of herbs and medicines to take in treating these areas of the body. Work on having a heat-reducing diet and try a lifestyle that is “less fuelled”. This is essential for healing and rejuvenation. So the focus is on cooling, relaxation, good food and overall lifestyle management.
Fibromyalgia may take a while to heal, but it all comes down to psychology. It gives you an opportunity to make changes in your life. They can be good ones. Through the storm there will always be calm.
Take this moment now to sit in your chair, lie down on your bed, and close down your eyes if you feel comfortable to do so. Take 5 minutes just to ponder.
Can you make time for a 5 Minute Mediation?
If you've read this article to this point, I really want to ask you right now to look at the mindful practices All Ability Yoga are offering. We’re growing and learning this thing as we go. It started as a dream, but it sort of fell into a reality. AAY shows us we can all do something – what we choose to do is our journey.
I wish you, from the bottom of my heart, all you beautiful beings, a wonderful day.
About Julie Clark
In February 1993, Julie Clark was working as a flight attendant when she began experiencing persistent headaches. After a particularly tedious 13 hour shift inbound on an aircraft from Moscow to Heathrow Airport, her usual persistent headache had become intense. Somehow she drove 17 miles home and then collapsed in a heap. From that moment, she lost her memory and she later became a brain surgery survivor. In 2019, Julie became the Founder of All Ability Yoga. She loves bringing people together and believes that when you find your ability, yoga is always possible.