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🌸 Fibromyalgia; Why is it playing with us?

These days when the disease seems to fade away, let’s take advantage of them!
Fibromyalgia is a disease that is as complex as it is unpredictable. For those who suffer from it or who accompany a loved one, it is synonymous with chronic pain, extreme fatigue, and sometimes despair. However, there are these days when the pain seems to go away, offering a respite, a break. But why do these moments occur? And above all, what do they mean?

These questions are as intriguing as they are divisive, because they touch on an often taboo subject. Through this text, I wish to explore these moments of calm, their mysteries, and what they teach us about the disease and about ourselves.

💭 Respite days: a medical enigma
Researchers agree that fibromyalgia is difficult to understand, and the fluctuations in symptoms add to this mystery. Why do some days seem more bearable than others? Here’s what we know:

A key role of the nervous system: Studies show that fibromyalgia is linked to a hypersensitivity of the central nervous system. These days of respite could be the result of a temporary “reboot” of this system, a pause in the transmission of pain signals.

The impact of stress and sleep: Better quality sleep or reduced stress can sometimes relieve symptoms. But these factors are not always enough to explain the long pauses observed in some patients.

External factors: Weather, diet or even hormonal rhythm can play a role. But here again, these triggers vary enormously from one person to another, making any generalization impossible.

🌟 A disease that cannot be cured
It is essential to remember: fibromyalgia cannot be cured. There is no cure, only approaches to relieve symptoms. These approaches vary from person to person: medications, alternative therapies, lifestyle changes, etc.

For my part, before I got sick, I was never sick. For 20 years, I did not have any real health problems. Like many people with fibromyalgia, I led a healthy and active life. This shows that this disease is not only linked to lifestyle or poor hygiene. It can strike anyone, without warning.

💡 Why is this subject taboo?
These moments of calm are often difficult to talk about. Why? Because when we say “Today, I’m better”, we are afraid that our disease will no longer be taken seriously. These days of respite can give the impression that fibromyalgia is not a serious or constant disease.

Let’s take a concrete example: after posting a reflection on these moments of respite, someone commented: “First of all, fibromyalgia is not a disease but a symptom… and finally, get the toxic people out of your life and you will have nothing left. Everything else is just blah blah.”

This type of reflection highlights the skepticism that sufferers face. It reflects a deep misunderstanding of what fibromyalgia is. Unfortunately, this type of comment can not only hurt, but also further isolate those living with the disease.

💡 The emotional impacts of moments of respite
These days of calm are not only a physical relief; they also play with our emotions:

Fragile hope: When one morning we wake up without pain, we say to ourselves: “It’s over. I’m cured.” We start to plan, to dream. But this hope can be brutally shattered.

Fear of return: Even in calm moments, there is often this anxiety in the background: “When will it come back?”

Guilt: Some patients feel guilty about getting better, as if these days called into question their diagnosis or their suffering.

🔄 The role of loved ones and external perception
Fibromyalgia does not only affect patients, but also their loved ones. The latter, whether they are partners, friends or children, often live in incomprehension in the face of the unpredictability of the disease.

A common example is when, after a moment of improvement, we promise something to our loved ones: “Today, it’s better. We’ll be able to go out, walk, enjoy ourselves.” And then, without warning, the disease strikes again, sometimes even more violently, during the activity or just before leaving.

This can be devastating, both for the patient, who feels immense disappointment, and for their loved ones, who do not understand this turnaround.

💔 Disappointment of loved ones and guilt of patients
When your body betrays you like this, loved ones may ask questions like: “But you were fine, what’s changed?” or even, “You don’t want to go out with us anymore?” These reactions are not always judgmental, but they remind us how difficult the disease is to explain.

As a patient, this can lead to deep guilt:

We feel guilty for having given hope to our children or those around us.

We feel guilty for having to cancel or change our plans at the last minute.

But it is important to remember that these “fibromyalgia breaks” are not a return to normality. They are unpredictable, limited, and do not mean that the disease is under control.

🌟 A lesson in balance
“Maybe you came here to find a clear answer. But the truth is that these moments of respite are not a solution, but a break that our body offers us to continue moving forward. They do not mean that the disease disappears, but that it gives us a moment of respite to breathe.”

Enjoy these moments. Take them as victories, without guilt, and with gratitude. And remember: you are not alone. Every day of respite is a strength. Every difficult day, a proof of your resilience.

🔬 The role of health professionals: A valuable help
Fibromyalgia is a complex disease that often requires multidisciplinary care. If you recognize yourself in these symptoms, it is essential to consult a doctor for an accurate diagnosis. Each patient is unique, and a treatment that works for one may not be suitable for another. General practitioners, rheumatologists, neurologists and therapists can play a complementary role in helping you find a balance between symptom relief and quality of life. Although fibromyalgia remains incurable, constantly evolving medical and therapeutic approaches offer avenues for living better with this disease.

🔬 What research teaches us and the importance of hope
Even if fibromyalgia cannot be cured, research continues to progress:

Therapies are emerging, such as neuromodulation or virtual reality therapy.

Researchers are also exploring the links between stress, sleep and inflammation to better understand the mechanisms of respite days.

These advances do not yet give us definitive answers, but they fuel the hope that one day, fibromyalgia will be better understood and better managed.

💛 Thank you for reading to the end
I hope you enjoyed this article and that it answered some of your questions or simply brought you a little comfort. If you want to discover other thoughts, shares or information on fibromyalgia and other subjects that are close to my heart, I invite you to explore my blog.

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👉 And above all, don’t hesitate to share this article around you: with your loved ones, your friends or anyone who might feel concerned. Together, we can raise awareness and create a community of support.

Thank you for being part of this adventure. Sophie

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