Fibromyalgia: "Sometimes it hurts so much that it feels like my bones are broken!"

Hello Lou974, thank you for agreeing to share your story with us on Carenity.

First of all, could you tell us a bit more about yourself?

Hello, my name is Lou, I'm 55 years old and I am a technical assistant in a primary school. I have five children who are now grown up. I like listening to music, cooking, reading, walking and swimming.

You have fibromyalgia. Can you tell us about the time when you were diagnosed? What prompted you to seek help? What were your symptoms?

I was diagnosed with fibromyalgia in June 2019 after more than 20 years of suffering. By simply changing doctors, I was able to get a diagnosis... 

I had excruciating pain that kept me up at night. I continued to work until my body could no longer take it. I had migraines, dizziness, nausea, tingling and burning sensations in my hands and legs, pain in my neck, lower back, pelvis and coccyx. I also had tinnitus and imbalance on my right side. I have constant abdominal pain, my hands and legs are constantly swelling.  

I used to have anxiety attacks. As soon as I am alone, I panic! I also have chronic insomnia. 

How did you feel when you were diagnosed? What did it change in your life? How did your family react? Do you feel like you have support?

I found it hard to accept the diagnosis. I had a very hard time with it. I closed myself off, I stopped leaving the house, but thanks to the support of my children, I was able to move forward!

I also have great colleagues who help me when I have problems. They understand that fibromyalgia is not a small thing!

What symptoms do you experience in the day-to-day? How incapacitating is your fibromyalgia?

I have chronic pain and fatigue, sleep deprivation and concentration problems on a daily basis. Sometimes it hurts so much that it feels like my bones are broken.

What impact has the fibromyalgia had on your social, professional and family life?

I am not as active as I used to be! I only work part-time and it exhausts me. I don't go out as much as I used to because driving hurts and it takes me days to recover.

My family is very present and understands me. It's not always easy for them because I sometimes have mood swings.

What kind of medical care have you received? Are you satisfied with it?

I've had good care! I've been given "long term illness" status under the French social security system, so everything related to my fibromyalgia (psychotherapy, physiotherapy, treatments) is covered. I'm also recognised as a "disabled worker" by the regional structure for the disabled. Everything was done for the best but I had to fight for recognition and coverage at the beginning.

A social worker from the French social security office (CPAM) helped me with all the procedures. I can no longer manage such simple things on my own. 

Are you taking any medication(s)? Is it helping? Have you had any side effects?

I take a lot of medication: anti-inflammatories, morphine when it becomes unbearable, various pills for everything that ails me.

The side effects are sometimes difficult to bear but I don't really have a choice.

You say that you are fighting for a professional redeployment. Could you tell us more about this? What steps have you taken? Where do things stand at the moment?

As far as my professional reclassification is concerned, a CPAM medical officer is going against the advice of my GP, the rheumatologist who made the diagnosis, the expert reports (4 in total from the regional structure for the disabled) and the experts. 

He claims that I can do any job!  

It's been five months since I returned to work and my health has deteriorated. I now have to use a cane to walk. I have excruciating pain all over my body. All the efforts I had made are going up in smoke...

I am therefore waiting for my redeployment but despite my illness I continue to work for a living!

How do you see the future? What are your plans?

I'm stressed because I have no idea about my future or what I'm going to do or what plans I have.

What advice would you give to Carenity members who are also living with fibromyalgia?

My advice is to tell them to fight, never give up, no matter how difficult it is, there are always solutions!!

Any last words?

Thank you to the Carenity team for allowing me to share my story, I hope it will help others in the same situation.

Many thanks to Lou974 for sharing her story!

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