Fibromyalgia: “Misunderstanding and scepticism are the hardest things to deal with in this invisible illness.”

Hello Sandra, you wish to share your story with Carenity, and we thank you for that.

To start off, could you introduce yourself in a few words?

My name is Sandra, I’m 46 years old, married, and the mother of a 20-year-old son. I love reading and writing. I’ve been practicing meditation for 17 years now, along with self-hypnosis. I try to do gentle walking or use a stationary bike every day to help manage my pain.

Before your fibromyalgia diagnosis, had you already experienced persistent or unexplained symptoms? Could you tell us what you felt and how it developed?

I was diagnosed with advanced-stage fibromyalgia in October 2023 by a rheumatologist. But I’ve also suffered from chronic migraine for over 20 years. My medical journey has been marked by a long period of uncertainty. I saw dozens of specialists to try to find the cause of my migraine and other pain, but none could give me an answer until this rheumatologist in 2023.

How did the process of getting diagnosed with fibromyalgia unfold?

The rheumatologist explained to me that before being diagnosed with fibromyalgia, it’s truly an obstacle course. MRIs, scans, ultrasounds, and X-rays often reveal nothing abnormal, so fibromyalgia is often diagnosed by ruling out other conditions. Unfortunately, I had to figure things out on my own, because my general practitioner was completely at a loss and didn’t help me with my search.

What were your feelings when you first heard the word “fibromyalgia”? Was it relief, surprise, worry…?

When I was diagnosed, it was a real relief for me, and I cried tears of joy that someone was finally taking me seriously. It wasn’t all in my head!

What are the most prominent symptoms in your daily life? Which ones affect you the most?

The hardest part of daily life is the widespread pain that never lets up and makes every task difficult to start, intense fatigue, of course non-restorative sleep, significant digestive problems and constipation, and lately, more and more difficulty walking.

Fibromyalgia can have a major impact on quality of life. How does this affect you personally?

I worked as an administrative assistant for twelve years in a company that dismissed me for incapacity a year ago. I had wanted to reduce my working hours because it was becoming too difficult to manage full-time, but my request was refused, which led to a major loss of self-confidence and a fear of returning to work one day in an environment with unkind people who refuse to understand.

Do you have a current treatment plan? Does it include medication, natural approaches, or psychological support?

I’m on several medications for my chronic migraine, including an antidepressant and hospital infusions. For fibromyalgia, the rheumatologist prescribed tramadol, which I no longer take because of the risk of dependency; instead, I take paracetamol or ibuprofen. I also use a TENS unit (electro-stimulation) and essential oils to try to regulate the pain. I rely heavily on meditation, relaxation, and hypnosis to lower my stress, and I practice an adapted form of exercise every day. I’m also followed by a psychologist at the pain management centre, who gives me the support I need to keep going.

Have you ever faced misunderstandings from those around you or from healthcare professionals about your condition?

Misunderstanding and scepticism are the hardest things to deal with in this invisible illness. All the specialists I saw found nothing and offered no direction. Some said it was in my head, that it was just stress, that I was too anxious. Some of my colleagues didn’t really believe me, and even at times, my own family doubted the pain I was feeling. I think that’s the hardest part: having to explain over and over, so people take you seriously. It’s exhausting!

Fibromyalgia is often an invisible illness. Has this influenced your self-image or your relationships with others?

For the past six months, I’ve had to walk with a cane because my legs can no longer support me well enough. It was very hard to accept and to take the step of going out in public with a cane. But today, I fully embrace it because it allows me to stay independent.

What would you like to say to someone who has just been diagnosed with fibromyalgia or is in the process of getting diagnosed?

What I would like to say is that you need patience and courage for this long and difficult road. You have to look for natural solutions that make you feel better day to day, and be cautious with medication, which is often too strong and unsuitable. Surround yourself with kind people to talk to, keep researching to find tips, and sign up for forums like Carenity, they’re an important source of information and support!

Would you like to share a final word, a hope, or a thought for the Carenity community?

To all my friends on Carenity, thank you for all your advice. Thanks to you, I feel less alone in this fight! Illness isolates you, but when you know you’re not alone, you feel stronger!

A big thank you to Sandra for her testimony!

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