Lately, the subject matter of fibromyalgia has popped up in my life a lot. I have been living with this chronic pain condition for over 17 years, and over the last few weeks people in different situations, especially some of my coaching clients, have been asking me about it. I think more and more people, especially women, are starting to put the often puzzling symptoms together and are either being diagnosed or are starting to realize themselves that they may have fibromyalgia.
Fibromyalgia is a serious condition, and its symptoms are often baffling, so I thought I’d put together a few things I’ve learned.
First, a general definition: ’Fibromyalgia syndrome affects the muscles and soft tissue. Symptoms include chronic muscle pain, fatigue, sleep problems, and painful tender points or trigger points, which can be relieved through medications, lifestyle changes and stress management.’ This definition is from http://www.webmd.com/fibromyalgia/default.htm, a website I find helpful, but there are many others, and ultimately everyone who suspects that they have fibromyalgia or similar/related symptoms should, of course, see a physician (often rheumatologists are a good starting point) before going down the dark, gloomy spiral of self-diagnosis.
Another definition is this: ‘Fibromyalgia (FM) is a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling, and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety, and posttraumatic stress disorder. Other types of chronic pain are also frequently present.‘ *
There is, of course, a flood of information to be found online, but here are some things I wished I had known when I first started to learn how to live with fibromyalgia:
The main symptoms, chronic pain in the soft tissue of various parts your body, and the ensuing depression (sadness, anxiety, frustration, self-loathing, fear, irritability, loss of sense of purpose, etc.) come and go in waves. A lot has to do with the levels of stress you’re experiencing at any given time in your life. Although it may seem that stress is unavoidable, a lot of it can be managed and changed. This may require updating and implementing new skills when it comes to practicing better self-care and setting healthy boundaries. It may require getting some help so you can monitor and manage the severity of the pain levels as you learn to minimize your experiences of stress. This was a game changer for me. It put me in charge, at least to some degree, and taught me how to manage the varying symptoms of fibromyalgia.
Physical pain causes mental pain. And mental pain causes physical pain. The cyclical nature of this condition was one of the concepts along which my initial therapy at a clinic that specializes in fibromyalgia in Germany unfolded. Once I realized that physical pain causes mental suffering, and vice versa, over time I was able to arrange my life in a way that would break the cycle at its strategic weak points.
Let’s have a look what stress means and what it does: ‘Stress is your body’s way of responding to any kind of demand or threat. When you sense danger—whether it’s real or imagined—the body’s defenses kick into high gear in a rapid, automatic process known as the “fight-or-flight” reaction or the “stress response.” ’
So, living in a state of ongoing mild, moderate or severe stress is putting our minds and bodies into a state of constant hyper-vigilance. Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect activity. If you were an animal in this mode you’d be ready to run or fight at the slightest sound, like a branch cracking, because it may or may not represent a threat to your life. Hyper-vigilance may bring about a state of increased anxiety which can cause exhaustion.
Stress leads to hyper-vigilance. Hyper-vigilance leads to exhaustion. Exhaustion is another word for fatiguing our minds and bodies over long periods of time without sufficient, regular opportunities for deep rest, joyful mobility and mental replenishment. Exhaustion and ‘driving on empty’ over prolonged periods of time can lead to the physical and mental symptoms currently classified as fibromyalgia.
I find it important to mention that fibromyalgia is a classified illness. ‘The International Classification of Diseases (ICD-10) lists fibromyalgia as a diagnosable disease under “Diseases of the musculoskeletal system and connective tissue,” under the code M79-7, and states that fibromyalgia syndrome should be classified as a functional somatic syndrome rather than a mental disorder.’ *
Another interesting fact: Fibromyalgia predominantly affects women — as many as 90 percents of cases are diagnosed in females, according to U.S. government statistics. Men get the disorder too, but they experience it very differently. Males tend to get fewer and milder symptoms than women.
Many people, including physicians and other healthcare professionals, have used fibromyalgia as a throw-away label for otherwise undiagnosable symptoms. As a result the term fibromyalgia has gained the dubious reputation that it is ‘all just in her/his head’ which, combined with the fact that its symptoms usually don’t show any visible manifestations, causes many fibromyalgia patients to feel isolated and unseen, or even worse, doubted or dismissed while struggling to manage their daily pain levels. The majority of people I met in the treatment center for fibromyalgia in Germany named their family’s and friend’s doubt or dismissal of their symptoms as one of the main reasons for their experienced stress and suffering which in turn exacerbated their mental and physical pain levels.
So what does the mind do in this situation? In order to cope with the mental and physical pain, our mind offers resistance to the suffering it is experiencing. The mind uses coping mechanisms that often manifest themselves as egoic expressions of our unhappy selves. The ego tries to make us feel like a victim (sadness, self-pity, hopelessness, etc.) or it tries to hijack us into a state of superiority (denial, anger, irritability, etc.), both of which I have experienced and continue to deal with in various ways. To me, the key to staying in charge of my mind’s undulations is to find and practice ways to break the pain cycle at strategic points.
In order to make the physical pain more tolerable, I have found ways to incorporate several practices into my daily and weekly life. Resting, napping, gentle or vigorous physical activities, joyful mobility, interacting with animals, spending time in nature and surrounding myself with positive people, energy work (Reiki), and being present with myself and those around me are some of the main factors to consider. It took time to cultivate these things to a point where I could sustain a somewhat ‘normal’ life, but the important thing is to get started with whatever seems doable and then expand from there.
In order to make the mental pain more tolerable I have tried and found the following measures useful at varying times and to varying degrees: Presence/awareness work, meditation, coaching, thought-dissolving practice, communing with nature and animals, conventional and unconventional forms of therapy, medication, and again finding a supportive group of friends and people whom I can trust to let me be who and how I am on any given day.
I made the graphic called the ‘Pain Cycle’ to illustrate what I’m talking about in this post. It may offer a different perspective on what you or a loved one may be going through. I always find it easier to navigate things when I have a way of orienting myself.
Seeing my active lifestyle, now and then people have asked me what my secret is when they find out that I have fibromyalgia. The answer is, there is no secret. There are many ways to get educated and options to choose from to help yourself. Let me reiterate some of the things we all know but can’t be reminded of too often:
• Watch how much stress you allow into your daily life. Reorganize, delegate, be vocal about things you need, enjoy and things that are too much. Become brave(r). Don’t be afraid to break conventions. It’s your life. You’re in charge of it. You deserve to be happy.
• Rest. Sleep. It is crucial for a healthy energy reservoir and well-running metabolism. Nap — yes, really — 15-30 minutes can do wonders. Take ‘slow time’ for yourself — and not just to recover but to sustain and have reserves for the things that are meaningful and joyous to you.
• Speak up. Don’t suffer silently. Let your loved-ones, friends and colleagues know in your own words what’s going on. Secrecy will worsen your symptoms. Speaking up in a clear, objective manner is a great way to deal with your own inner turmoil and a welcome piece of information for those who would like to know how to support you. Remember, you are in charge.
• Don’t isolate yourself. Take time out as you need it, but reach out and be part of a community in whatever ways feel good and right to you. To find local support groups click on this link: https://www.fmcpaware.org/support-groups/browse-support-groups.html?sid=54:Support-Groups. There are many ways to live your life to its fullest with fibromyalgia, and reaching out to communities of people who are on similar paths and who are educated and able to help you is the first step.
• Let go of as many thoughts and activities that have to do with notions of ‘I should’ or ‘I have to.’ Watch for egoic thought patterns that no longer serve you and increase your pain levels. If you don’t know how, find a coach or a therapist to guide you. Start new practices — meditations, walks, joyful mobility, yoga, tai chi — and again find guidance if you don’t know where to start.
• Spend time in nature, be present with plants, animals and Earth. This is where you came from. This is what you will always be part of. This is what will always allow you to find your way back to peace and compassion for yourself and others.
• Find ways to express yourself creatively. This can be anything that lights you up and lets you tap into your natural gifts. Develop and share your gifts. Sharing is a bit part of health and healing.
• Oh, and did I mention rest? I usually have a list of things I want to do this day/week/month, and after organizing it by priority I usually have to figure out how to do what I want to do by weighing how much can realistically be done given a finite amount of energy each day. Being by nature a workaholic this took some time to learn and still takes daily discipline to keep up. But. It. Can. Be. Done.
• A great book that helped me with all of this is ‘The Power of Now’ by Eckhart Tolle. He speaks of the importance of separating yourself from the ‘pain-body’ which can otherwise turn into an overwhelming entity with paralyzing powers over a person who hasn’t learned to master this type of thinking, being and doing. Other works by Byron Katie, Don Miguel Ruiz and Thich Nhat Hanh have been essential to living in a more peaceful state of mind.
As I’m writing this post I realize how blessed I am to have found a way to write, ride, coach, teach and work with horses and people on a daily basis. I live a somewhat simple life, but it is perfect for me. It allows me to follow my calling and lets me live my life (for the most part) at peace and in balance. I’m hugely grateful to the animals and people who understand, support and accept me for who I am — passionate horse person, quirky coach, animal lover, hermit-like writer and person that can’t be hugged too tightly on certain days — what can I say, life is good.
Whether you are a person afflicted with fibromyalgia yourself or you know someone who is dealing with it, be mindful to acknowledge what is going on. Have a look, think what it really means and what you can do to make things better for yourself or a loved one.
Above all I encourage every brave soul to see what life has in store for you — not despite, but because of this condition that may, in fact, become a valuable measuring tool for how you want to create your most joyful and amazing life. Hooray for that! I cheer you on! Let’s live life to its fullest! 🙂
[First published 08-01-2017]