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A MyFibroTeam Member asked a question 💭
Bendigo, AU

https://www.google.com.au/amp/s/www.healthcentr...

Hope this helps you explain your illness to your friends and family.

October 29, 2017
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Answer Summary

Members expressed gratitude for a shared resource that helps explain fibromyalgia and chronic illness to friends and family who struggle to... Read more

Members expressed gratitude for a shared resource that helps explain fibromyalgia and chronic illness to friends and family who struggle to understand invisible conditions, with many planning to send it to loved ones who dismiss their limitations as excuses. Several members discussed the complexity of fibromyalgia as a central nervous system disorder affecting how nerves send pain signals to the brain, clarified its relationship to autoimmune conditions like rheumatoid arthritis, and shared that having multiple autoimmune diseases is common. A recurring theme was the emotional toll of hiding their conditions to avoid stigma, the challenge of finding doctors willing to treat fibromyalgia, and the importance of advocating for oneself while navigating pain management and treatment options.

A MyFibroTeam Member

@A MyFibroTeam Member

My rheumatologist described it as a CNS
It is a CNS as the isdue with fibro lies in the nerve endings.
Fibro is all about our senses. Taste, touch etc
When our skin touches something, our nerves CNS read that touch incorrectly and sends a signal back to the brain to read that sense as pain.
Itbis all about the nerves sending messages back to the brain as pain and that is why we are in constant pain because our brain is being sent the wrong signals all the time.
That is why a rheumatologist treats fibro and not a neuro.

October 29, 2017
A MyFibroTeam Member

Isn't that sad that we can't be honest, that we have to hide it. I feel like I wear a mask all day at work to act normal. It's very exhausting. Then I get home and crash.

November 3, 2017
A MyFibroTeam Member

We bought the book as well. As sometimes Dr. GOOGLE doesn't have all the answers. It's a very good book. My hubby has done extensive research, however every now and again he forgets thinking I'm well...I'm so sorry to hear many of ys have siblings that's not interested in us with our drama....my son has been like this for 2.6 years. It virtually broke my heart in 2! He is starting to get back to me and acknowledge my answers on his fb. He blocked me. I think it was because he didn't want to look at the pics I put through. So please know I pray that your relationships with siblings eventually come to their senses.
My heart cries for u. Xxx

October 29, 2017
A MyFibroTeam Member

Hj, thanks for posting that link! So many people (including doctors and nurses) need to read it. It would be great if they'd try the clothespin experiment and visualize it the way described. Our lives would be so less frustrating if people only understood.

October 29, 2017
A MyFibroTeam Member

@A MyFibroTeam Member
I got diagnosed in 1996. And youre right, there was no internet. I bought the book too. My rheumatologist didnt feel the need to educate herself so it was difficult at that time with so little known about Fibromyalgia to find a doctor who was willing to treat it. I am so glad more research is being done now.

October 29, 2017

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