Surviving a diagnosis of Fibromyalgia
The necessary prescription for moving past a diagnosis of FMS.
Widespread pain Un-explainable aches Disturbed sleep Weakness Loss of fitness Memory Problems Pins and needles Disrupted sleep Headaches Light sensitivity…
The list of symptoms is long and the pattern is often missed by medics, but fibromyalgia syndrome (FMS) is relatively easy to identify if you are alert to its existence. For those who suffer with FMS, there is usually no awareness that the condition exists and a journey of many years in which medical cures have been sought and frustration, disappointment and self-doubt have set in. By the time a diagnosis is received, many people are already feeling quite physically and emotionally defeated.
Once a diagnosis of FMS has been provided, people can feel an immediate sense of relief. At last, an answer or explanation. However, this can be short-lived. Quite often, the diagnosis comes with no detailed account of what is the cause, what FMS even is and what you should do in the future to live with this condition. Google becomes the source of information which can often lead to unhelpful advice or extreme stories that create panic and fear.
I’ve spent many sessions, with patients, addressing these issues as an intervention in and of itself. Information is empowering, so here is the backbone of what we discuss:
What is FMS, what causes it and where does it end?
FMS is a complicated condition that has a great deal of theory surrounding it and not much science — partly due to the huge variety of presentations.
I find that using metaphors makes the theories very accessible. I ask people to perceive that the brain is listening out, with headphones, to the body for sensations and pain (through the nerves — wires that feed information back to the brain).
Often, through a prolonged experience of stress (caused by virus, relationships, abuse or other physical and/or emotional trauma) the volume on these headphones is turned up as a result of the experience of threat, real or imagined — the brain is hearing pain when there is no injury. This occurs on a biological / chemical / hormonal level and is not imagined.
The brain reacts to the high volume by hearing (perceiving) pain in areas where there is no injury, even the whole body. As a response it triggers injury reactions including inflammation, over-sensitivity of the ‘injured area’ and behaviors such as rest, tensing of the body and withdrawal to protect the ‘injured body’.
This is cyclical and the process, over time, feeds the condition. You may rest too much, push too hard when feeling well, worry about the condition and become hyper-vigilant, looking out for new symptoms to such a degree that new symptoms lead to increased anxiety. Over time, one’s mood can become bound to the body so that high pain equals low mood and high anxiety. A loop is formed that is difficult to break — and this loop keeps the volume up... the central nervous system (your nerves communicating pain to your brain) becomes over sensitized and it tends to stay that way so that more and more sensations feel like pain.
The outcome — FMS (more on this here).
Important things to know. FMS futures are uncertain — you can learn to manage your condition and you can live with it. Many people describe it as incurable, but this is not the same as a prognosis of endless suffering. Living with FMS is possible and suffering is not prescribed.
On a side note here, it is important to realise that pain is not as tangibly real as we experience it. In the case of a patient who has lost their leg, they can continue to feel pain in their foot — phantom pain. The brain creates the experience of pain and places it in the body rather than it experiencing pain out in the body. A difficult concept to understand, but put simply: pain is created and experienced in the brain despite the illusionary ‘feeling’ of it being out in the body. As an example, I once met a patient who would feel pain in random parts of his body until he placed his artificial leg back on and then it would immediately locate in his big toe.
The first challenge — embracing the new you.
This may read like an absurd concept, but it is imperative that this new you is embraced. Your body has developed new needs and you have to accept it — battling with yourself is self-defeating.
FMS thrives on anxiety and stress, if the body is excited by further stress on symptoms can worsen, so learning to be calm in the context of pain (and other symptoms) is key. Central to being calm is the ability to not react emotionally to your physical symptoms. Of course, you will always be immediately struck by your daily symptoms — but the true source of suffering comes from the overlay of anxiety, disappointment, depression, self-doubt etc and not your body.
Believe it or not but you can endure physical pain and disability — people do it every day. These negative thoughts and feelings are not symptoms of FMS but created out of your own reaction to your situation.
this is a new stage for your body
it’s not unfair, this is a consequence of your body and your experiences
your body needs you on it’s side, not fighting against it (read my piece on self-compassion, it may help).
Recognise that the repeated visits to your GP or clinician are often underpinned by panic and fear about the future or about not being cured. FMS is not a condition to be ‘cured’ but self-managed. Self-management can only begin after acceptance.
Then…manage your negative thoughts
The journey to diagnosis is often long and brings with it years of failed hope, disappointment and self-doubt. I hear patients call themselves pathetic, stupid, silly and more… usually always negative. If their body’s state and life isn’t hard enough they hammer into themselves with insults for not coping better.
I have risked my life many times with the following line:
Your misery is your own choice!
(which I say to patients to introduce the idea that removing suffering from their lives is in their power)
Your reaction to your body, your medical experiences, your lost life, your future…is your own choice. You may need help (perhaps therapy or a good friend), but you need to identify that replacing self-denigration with self-love is a primary need for you if you are to live and thrive with FMS.
Self love needs self-compassion and is enacted through self-soothing (read my piece on self-soothing).
The journey with yourself starts here
There are rafts of strategies for living with FMS, which include diet, mindfulness, pacing, medication — but truly, the work has to start with yourself, your relationship with your body and your power over your negative feelings towards yourself. This area of need is rarely addressed at the point of diagnosis, but is as essential as any prescription if not more.
Embrace your new body
Be kind to yourself
Start each day anew