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"No one really knows anything about fibromyalgia, what it is or if it’s even a real disease."

Nov 8, 2019 • 3 comments

Staring down fibromyalgia, Carenity Italy member Rosaline was tired of fighting alone! She tells us about her daily battle to lead a normal life she can enjoy with her husband. 

Hello Rosaline, could you tell us a little about yourself? 

My name’s Rosaline, I’m a young retiree, 62 years old, and I’ve been living with fibromyalgia for four years. My husband, who’s also retired, and I continue to lead a very active life.

How did you hear about Carenity? 

I found your site thanks to Google. I was looking for a forum where I could talk about this illness which all too often is shrouded in silence.

How would you describe your illness? 

No one really knows anything about fibromyalgia, what it is or if it’s even a real disease.

What keeps bringing you back to the forum every day?

Thanks to you, I don’t feel alone anymore and when I was feeling like things were really bad, I discovered people who were having a rougher time of it than I was or others who were in good spirits.

How did your family and friends react when you were diagnosed?

My friends and family kept telling me to go see my GP, it’s only now that they really understand and they’ve studied the illness a bit. But still, it’s sometimes difficult to get them to understand that I can’t do certain things, without them making me feel guilty about it. Ignorance reigns supreme when it comes to fibromyalgia and the arrogance of a lot of medical professionals, who even though they don’t understand anything, like to pretend like it isn’t a serious or real illness, makes everything that much harder.

How does fibromyalgia impact your daily life?

It’s a constant, daily struggle against my own body and sometimes I ask myself if I’m going to make it. It’s a fight between what I want to do and what I can do and sometimes depression decides to rear its ugly head...

What sort of treatment are you taking now? 

Presently, I’m receiving treatment for ostheo-articular pathologies. The last rheumatologist I saw sent me off with orders to take a couple of aspirins and that was it.

What’s the hardest thing to live with? 

Not sinking into nostalgia, thinking of how I used to be. I always have a thousand things I want to do, but I feel lucky if I manage to follow through on even one of them.

What advice would you give to someone trying to get a correct diagnosis? 

I don’t really have advice for someone waiting for a correct diagnosis. I only hope that person finds a conscientious and knowledgeable physician.

Anything you’d like to add? 

Thank you Carenity, there were so many times where I felt discouraged or even desperate, but I was able to regain my strength by reading the different discussions on the platform. I realised there were a lot of us out there and I hope one day, soon, they’ll find a cure for this. 

A big thank you to Rosaline for sharing her experiences! What about you, how have you adapted your lifestyle around fibromyalgia? Share your experience with the other members by leaving a comment below.

Baptiste
avatar Baptiste Eudes

Author: Baptiste Eudes, Community manager Italy

Specialist in the field of health sports and digital communication, Baptiste joined Carenity in 2016 as Community Manager Italy. His objective is to help Carenity members to make the most of the platform and provide them with support and advice to better manage their daily lives.

Comments

on 11/9/19

My daughter and my best friend, both in their 30s, both suffer from fibro. Although they have both been diagnosed with the same illness their symptoms vary so it was difficult for them to get a proper diagnosis. Neither can work anymore and both had problems get the benefits they were entitled to.

When my daughter moved recently and took her prescription to a new chemist they initially refused to believe she could be on all the medicines. Another problem is that she is pregnant and is it a different hospital to where she had her daughter. In some ways they are brilliant giving her proper back support and seeing her every week etc but still insist that she will be able to have a natural birth which is really stressing her out. 

I am asthmatic, another invisible disability and the arguments we have over disabled parking is unbelievable. In one supermarket the security guard always keep an eye on her because she has had so much abuse. 

Both my daughter and my friend struggle on a daily basis which gives them depression. They are incredibly strong and brave in the face of such problems so young. 

on 11/9/19

Suffering myself for 6 years before i was officially diagnosed was destroying my confidence.  Im 72 and had it confirmed this year.  I fight through this illness, my hobby was gardening, i do bits as and when and now have a gardener come twice a month.  Dont let this illness drive you into the ground, pace yourself, its ok to go sit down every half hour.  I joined a Fibromyalgia Support Group and we have a private site on Facebook called HaltonFibromyalgiaSupport Group chat room. Its private sufferers can ask to be accepted and join in the chat room and talk to other sufferers confidentially.  I am now Treasurer of our 4 area groups, i wont let it get me down.  I hope this is helpful.  Google your own areas as you may find you have a support group near you.

on 11/14/19

I just got diagnosed with fibromyalgia about 5/6 weeks ago and just started on a 100mg of gabapentin it's helped a bit but not much but at least i can now walk to bottom of my street without my legs playing up but back is still killing me.

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