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A MyFibroTeam Member asked a question 💭
Lewes, UK

I know this is a really common problem, but how is the best way to illustrate to non sufferers some of the things we have to put up with. My mum has been so supportive as has my dad although he is very much a closed book and you get little interaction with him, however with my mum I am now getting fed up with the well meaning comments.

If you exercise you will feel better
Just go out for a little walk
If you lose weight you would be better
Plus knowing all about symptoms and telling me what… read more

May 14, 2017
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Answer Summary

Members rallied around someone frustrated by well-meaning but dismissive comments from family about fibromyalgia, with the overwhelming... Read more

Members rallied around someone frustrated by well-meaning but dismissive comments from family about fibromyalgia, with the overwhelming consensus being that educating loved ones requires finding simple, relatable resources rather than expecting them to fully understand without lived experience. Several members shared helpful tools including the Spoon Theory analogy, Fibromyalgia for Dummies book, the American Fibromyalgia Syndrome Association website, Pinterest visuals, and a party analogy explaining how the brain misinterprets pain signals when serotonin levels are low and nerve messages are amplified. A recurring theme was the emotional toll of invisible illness, the importance of setting boundaries around discussing symptoms with those who don't understand, and the wisdom that sometimes letting go of the need for validation from certain people is essential for preserving your own peace and energy.

A MyFibroTeam Member

Pinterest has great pictures and tips on fibromyalgia, on how to explain it to those who don't understand. Just type in fibromyalgia.

May 15, 2017
A MyFibroTeam Member

Ive had Fibromyalgia for 36yrs and dear if your gettin negativity from loved ones or anyone for that matter you just have to stop talking about your symptoms to them. It took me so so long to learn that. But life got better when I let go of that. They love you but unless they have a chronic pain diorder or have had one they just dont get it. And they never will.

October 18, 2017
A MyFibroTeam Member

found the free version at online.slidehtml5.com/ymyt/ueoa/ueoa.pdf I grabbed it myself Ah google is a wonderful thing lol

May 14, 2017
A MyFibroTeam Member

Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in those of us with this condition.

The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn simple things like mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. However, we don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why we have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the nerves and brain turn into actual pain.

Other substances in the patient's brain amplify a host of other signals—essentially, "turning up the volume" of everything. That can include light, noise, and odor on top of pain, and it lead to sensory overload. This can lead to confusion, fear, anxiety, and panic attacks.

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Or as I heard someone once say, it's like having flu, all the time but without the snot!

May 18, 2017
A MyFibroTeam Member

Try The Spoon Theory. It is not about fibro, but is about dealing with chronic illness and its effects. I hope it helps. https://butyoudontlooksick.com/articles/written...

May 15, 2017

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