Fibromyalgia: When Pain Doesn’t Tell the Whole Story
by Elke Franzeck
Part 1 of the series Fibromyalgia: Understanding, Caring and Living
Fibromyalgia cannot be understood by looking at pain alone.
Writing about fibromyalgia has a very particular meaning for me.
I am not writing only as an Integrative Clinical Therapist who studies the condition and seeks to understand the different possibilities for care.
I am also writing as a person who lives with fibromyalgia.
I know this reality through books, training and therapeutic practice, but I also know it through my own body.
And perhaps it is precisely in this meeting between science, professional practice and personal experience that I have learned one of the most important lessons about this condition:
fibromyalgia cannot be understood by looking at pain alone.
After all, what is fibromyalgia?
Fibromyalgia continues to be one of the most misunderstood chronic pain conditions.
For a long time, many people were told that their symptoms were “psychological”, that “the tests showed nothing” or that everything was simply caused by stress.
But the absence of a visible lesion on conventional tests does not make the pain any less real.
The pain exists.
The fatigue exists.
Sleep disturbances exist.
And the limitations that all of this can cause in everyday life also exist.
A condition that cannot be reduced to a test
The experience of fibromyalgia can involve different dimensions of life.
Among them:
- pain;
- fatigue;
- sleep disturbances;
- limitations in everyday life;
- difficulties with concentration and memory;
- hypersensitivity to different stimuli;
- emotional impact.
Therefore, looking only at the presence or absence of a visible lesion is not enough to understand what a person is experiencing.
Is it an autoimmune disease?
Currently, fibromyalgia is not classified as a classic autoimmune disease.
In autoimmune diseases, there are specific mechanisms through which the immune system reacts against structures of the body’s own organism.
In fibromyalgia, there are very interesting lines of research into possible immune alterations, neuroinflammatory mechanisms and other biological processes.
However, the available evidence does not yet allow it to be generally classified as an autoimmune disease.
Science continues to investigate — and that is important.
What we know today does not mean that all the answers have already been found.
So, is it a brain dysfunction?
I also consider this expression too simplistic.
Simply saying that fibromyalgia is a “brain dysfunction” can convey a misleading idea and, even worse, reinforce that old prejudice that the pain exists only “in the person’s head”.
It does not.
Today, one of the ways of understanding fibromyalgia involves the concept of nociplastic pain and changes in the way the nervous system processes and modulates pain-related signals.
We also frequently encounter the concept of central sensitization.
The “volume” of pain
We can imagine, in a very simple way, that we have an internal system that regulates the “volume” of pain signals.
In fibromyalgia, this system can become excessively sensitive.
Stimuli that would be only mildly painful — or even painless — to another person may be perceived with much greater intensity.
This does not mean imagining the pain.
It means that the way the body processes pain has changed.
I know this pain too
There is, however, a dimension of fibromyalgia that no scientific definition can fully explain.
It is the experience of living inside a body that does not respond in the same way every day.
I know that experience.
I know what it means to wake up and realize that my body has not kept up with my desire to start the day.
I know how apparently simple tasks can, at certain moments, require an enormous amount of energy.
I know what it means to reorganize commitments, manage priorities and accept that sometimes what I would like to do does not correspond to what my body is able to do that day.
Fibromyalgia has taught me that we do not start every morning with the same reserve of energy.
There are different kinds of days
- There are good days.
- There are less good days.
- And there are days when we need to carefully choose where to place the energy we have.
Pain and fatigue are not laziness.
Needing to rest does not mean giving up.
And respecting the body’s limits does not mean stopping living.
One of the difficulties of so-called “invisible” conditions is precisely this:
we may look fine on the outside while, inside, we are managing pain, fatigue and an enormous effort to keep going.
Fibromyalgia is much more than pain
Widespread pain is one of the best-known manifestations, but the condition can involve much more.
Persistent fatigue, non-restorative sleep, stiffness, difficulties with concentration and memory — often described as fibro fog — headaches, hypersensitivity to different stimuli and emotional changes may be part of some people’s experience.
And there is a complex relationship between:
- pain;
- sleep;
- stress;
- physical activity;
- emotional state.
When we sleep poorly, we may become more vulnerable to pain.
When we experience pain for long periods, we may sleep worse.
When we are constantly tired, dealing with everyday demands becomes more difficult.
A cycle is formed that we need to try to interrupt.
The body that does not always respond in the same way
Perhaps one of the most difficult things to understand, for those looking from the outside, is precisely this unpredictability.
One day may begin in one way.
The next day, the same body may respond completely differently.
This can mean reorganizing commitments, managing priorities and carefully choosing where to place the available energy.
It is not simply a matter of wanting or not wanting to do something.
It is about recognizing that the body’s capacity can vary.
And recognizing this is also part of caring for ourselves.
Understanding before judging
Fibromyalgia may be an invisible condition to those observing from the outside.
But invisible does not mean nonexistent.
A person may be smiling, working, talking or carrying out an everyday task while, internally, managing pain, fatigue and limitations that are not always visible.
Perhaps that is why understanding fibromyalgia also requires us to change the way we look at those who live with it.
It is not simply about asking:
“Where does it hurt?”
We need to recognize that there is a whole person behind the diagnosis.
A person with different kinds of days, different levels of energy, different needs and their own story.
A disease does not have to define a person
Fibromyalgia, therefore, cannot be reduced to a single word.
It is not just pain.
It is not simply psychological.
And it does not, by itself, define the person who lives with it.
Understanding it also means beginning to look at the body in a broader — and more human — way.
And perhaps it is precisely this perspective that allows us to move from simply trying to explain the pain to being able to understand the person who experiences that pain.
A condition can be part of someone’s story without having to become their whole story.
About the author
Elke Franzeck
Integrative & Transpersonal Clinical Therapist · Naturopath · Clinical Aromatherapist · Reiki Master
Originally from Porto Alegre, Brazil, mother of three daughters and one son, and grandmother of three, Elke Franzeck has lived in Coimbra, Portugal, for 17 years.
Her journey brings together training, experience and different therapeutic approaches, but one principle runs throughout her work: the understanding that each person carries a unique story and cannot be reduced to a technique, a diagnosis or a formula for care.
For Elke, care begins even before choosing an approach. It begins with listening, welcoming and respecting the story of the person who arrives.
Discover Elke Franzeck’s page in the Mundo Reiki Library.
Elke Franzeck
Integrative Clinical Therapist
Caring for the soul is also allowing life to flourish.