The diagnosis is preceded by a long journey

Eventually, you get your diagnosis. For me, it was early 2004. It's a long, rocky road before that. Today, you don't see questioning looks everywhere if you say, "I have fibromyalgia." Today you don't hear sentences like "fibromyalgia doesn't exist, it's when doctors don't feel like doing their job" as often. When did fibromyalgia actually start in my case? There have been and still are so many theories about what triggers the disease. There are many similarities among those affected that could be involved in the development of the disease. Here I would like to refer to and describe the results of a study that has identified possible causes.

Stepping stones along the way

So far, no specific gene causing fibromyalgia has been discovered. But if one case occurs in a family, there are likely to be more.  I am now almost 57 years old, my parents and grandparents did not know such diagnoses, but there were diseases in the family such as lupus, type 1 diabetes, Hashimoto thyroiditis, inflammatory bowel disease. These are autoimmune diseases. One study says that an autoimmune reaction seems to be involved in the pathogenesis (development) of the disease in some fibromyalgia patients.

I had two significant road accidents. Afterwards, the pain lasted for an unusually long time. After about 6 weeks, they were always told not to have any more pain. The subtext was "you are overreacting or not telling the truth". That was almost 40 years ago.

There were a lot of changes. The first one I remember is the first time my parents separated. I went to school in the morning and was picked up in the afternoon. We didn't go "home" but to a flat in the city. "This is where we live now" my mother said and that was the only explanation I got.

I have had ADHD - Attention Deficit Hyperactivity Disorder since childhood. But it was only diagnosed when I was 40. That can explain some of the concentration problems. ADHD and fibromyalgia

It would be tedious and boring for you if I listed all the events in my life that could possibly have played a part in developing fibromyalgia. Each incident on its own is not such a big deal. Everybody has a life. It´s probably the number of incidents and the effects they had on essential life skills and other important areas.

Study names 4 groups of topics

As part of a study conducted in Great Britain in 2018: What causes fibromyalgia? An online survey of patient perspectives (source below), 596 patients were questioned about the causes of their fibromyalgia. They revealed which events ignited or made their pain worse. These statements were then analysed and sorted by topic. Four subject areas were identified:

• Physical injury, bad health
• Emotional trauma, hardship and distress
• Stress and vulnerability
• Explaining and justifying Fibromyalgia

Physical injury, poor health, and change

What does that mean? Tales of physical causes of fibromyalgia. There was talk of assault and battery, accidents, assaults by third parties, operations, poisons and allergens, and physical illness. Injuries to the spine, especially the cervical spine, were particularly frequent. There were usually several physical incidents.

Emotional trauma, hardship and distress

What's that supposed to mean? Experiences that have primarily had an emotional or psychological effect. There were statements about poor mental health, loss, grief, shock and trauma, the effects of abuse, and excessive bullying. The difficulty of living an outwardly normal life with abnormally severe psychological and emotional conditions was also reported.

Stress and vulnerability

What is meant here? Burdens that the participants had to overcome in their daily lives. Caring for a relative, e.g. a parent (this may have been as a child), difficult situations in their professional environment, financial distress, relationship conflicts. In some cases, the ordinariness of these experiences was very different from the traumatic experiences described above. Sometimes a susceptibility to develop fibromyalgia was linked to the way in which disease was generally dealt with in families. I think we are talking about resilience here. Resilience is the ability to adapt well when faced with adversity, trauma, tragedy, threats or significant sources of stress.

Explaining and justifying Fibromyalgia

And that means? The majority of the participants offered clear explanations for the development and worsening of their disease, although they lived in an environment where the development, indeed the existence of the disease fibromyalgia was still questioned. Fibromyalgia was a logical part of their lives. It was remarkable that these reports were so unambiguous, clear and detailed, although their family environment, doctors and society rejected the disease fibromyalgia.

It is still not yet clear when and how fibromyalgia begins.

It has become clear that the causes of fibromyalgia are still very complex.

The results of the studies underline how complicated the development of the disease is and substantiate already acquired knowledge. This is particularly true for stress and vulnerability.

They also indicate that the participants independently told many similar stories about the development of their disease and what preceded it. In this respect, these findings are significant for further research and for all those involved in their treatment.

What does it all mean in the here and now?

Getting sick does not mean that you failed, that you were unable to cope in the face of trauma, stress and other difficult situations. You can be resilient and still get sick. Having resilience does not mean not feeling pain or not being affected by trauma. It means the ability to bounce back, so to speak. The question is, how often can you do that? The answer to this is different for each person. Learning to be resilient can also be part of a coping strategy.

I think it's important to look ahead. In the beginning, after the diagnosis, you start a journey into the past. Maybe we can help with our experiences to solve the mystery about the origin of the disease. But then it is important to look ahead, to continue the journey, to find a new path. To do the best we can, and that is enough.

Sources:

Fischer, A., Mittenzwei, M., & Jirikowski, G. (2018). Fibromyalgia as an autoimmune disease? - A pilot study. Physical medicine, rehabilitation medicine, spa medicine, 28(4), 10. https://doi.org/10.1055/s-0038-1668261

Furness, P., Vogt, K., Ashe, S., Sophie Taylor, S., Haywood-Small, S., & Lawson, K. (2018, September 25). What causes fibromyalgia? An online survey of patient perspectives. Retrieved May 19, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6158621/

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