NFA QuestionsCategory: FibromyalgiaFibromyalgia and work
Rosaria Mastronardo asked 4 years ago

Hello, my name is Rosaria Mastronardo. I am the contact person for Tuscany for the Libellula Libera association, which has been suffering from fibromyalgia for several years and is spasmophilic.I live in Italy in Florence. As you know, in Italy Fibromailgia is not recognized and we suffer from health problems and we have no protection.Do you have any suggestions to give me in order to raise awareness of the problem in these contexts?I have made several conferences on the matter but with few successes, many women quit because they cannot bear the hard workload.Thanks

1 Answers
Johnna Worster answered 3 years ago

It is such a hard thing to have an illness that people do not “recognize ” as an illness. I know that I stopped seeing one physician because he said he didn’t “believe ” in fibromyalgia.  It is insane to NOT recognize an illness that is so prevalent today. 
I was diagnosed with fibromyalgia before it was called fibromyalgia.  It was called “fibrocitis.” I started having issues with fibromyalgia when I was 19, shortly after the birth of my first child. It started with a complete and utter exhaustion that never seemed to end. I would get up in the morning more tired than when I went to bed, my whole body ached and I felt so unwell all the time. I went to doctor after doctor and was told at first that it was “post partum depression. ” I wasn’t depressed, I was happy, but I was exhausted and in pain. 
The issue got worse with the birth of each child. I had my 3rd child at 23, got my tunes tied (though I really wanted more children) I just didn’t want this “mystery” illness to keep getting worse and worse. I was so tired and just about to the end of my rope when I went to the doctor and happened to see a doctor that I had never seen before, he started touching spots on my body and every time he did, it was excruciatingly painful in each new spot he touched. I walked out of that office with a “DIAGNOSIS!!!” I felt like no matter what happened from that moment on, SOMEONE had FINALLY heard me, someone had finally given a name to what was wrong with me.
It has been 40 years since I first started having problems with “FIBROCOTIS,” now known worldwide as “FIBROMYALGIA.” It IS AN ILLNESS!!!!! It causes us to miss more work than most because our immune system is not as good and our illnesses (flush, colds, etc) last longer than other peoples.  This is what we our life is. FIBROMYALGIA  is the gift that keeps on taking. I have every single one of those spots (though you only need 11 to be diagnosed with fibromyalgia) and if someone accidentally touches one of those trigger spots, it is like being stuck with a knife. 
I am so sorry that your country is unwilling to understand that this illness DOES exist. It makes it difficult for our bodies to absorb vitamins and minerals and it makes it difficult for us to maintain a perfect work record because there are days when we can’t even get out of bed. 
It was difficult raising 3 children and working full time when my husband just thought I was lazy. He learned a valuable lesson from my rheumatologist years later though.
Though that doesn’t matter, he is some other woman’s problem now. I did my 33 years in his hell.