Mod S2S Mentor

World Fibromyalgia Awareness Day 2018

May 12th is the world-wide day of awareness for the invisible and debilitating condition known as fibromyalgia (pronounced fy-bro-my-AL-ja) and other illnesses like it. It affects 3-6 percent of the world’s populations, and is most common in young to middle aged women. Millions around the globe will be holding various events such as virtual walks and sharing their stories to raise awareness. But what is this actually all about?

What is Fibromyalgia?

Fibromyalgia is a complex chronic pain disorder that affects people physically, mentally, and socially. It has a huge array of symptoms, due to there being many kinds of pain and fatigue, though the most common are widespread muscle pain, headaches, fatigue, problems sleeping/non-refreshing sleep, digestive issues, and many others. Usually people don’t have all the 60+ symptoms of fibro, but many have quite a few at once that can increase in intensity known as a flare up. Researches believe the root of the condition is the change in how your brain processes pain signals. It can last for years or be life-long.

(Credit: Holly Hoffmeister Toulouse)

How Do You Get Diagnosed?

This disorder is tricky because there’s no official test to confirm you have it. The main way people find out they have fibro is they test negative for any other illness with similar symptoms and there’s no other explanation for why they feel the way they do. It’s really hard to live with because there’s no official treatment and the pain/fatigue can make daily tasks nearly impossible when the symptoms flare. Some try gentle exercise, yoga, Tai Chi, diet changes, but varies on the person on how they manage their symptoms.

(Credit: Kalani J. Brickhouse)

Why is Awareness Important?

There’s a lot of misunderstanding with invisible illnesses like fibromyalgia. Because it doesn’t show many external physical symptoms, people can’t tell you’re sick just by looking at you and often don’t believe you’re sick at all. Even some doctors don't understand fibromyalgia that well. This stigma puts a lot of doubt and guilt on people who are dealing with these symptoms that they’re being told is all in their head, even though they clearly can’t do what they used to. Therefore a lot of people with fibro experience depression and anxiety due to the misunderstanding around their struggle. Awareness helps make this invisible illness visible so people understand what this condition really is. There's also no cure for the illness due to its mysterious nature, so awareness can help further research how to help people suffering from this disorder.

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While I’ve not had an official diagnosis yet, I’ve hit all the requirements to be diagnosed with fibro and experience a lot of the symptoms, changing my lifestyle and how I envisioned my future. I'm only 17, and yet I feel like my body is an old, haunted temple, crumbling and falling apart. A lot of my mental grappling with accepting and adapting to fibro is from myself, as it put my ambitious creator and excelling student persona on sudden hold. I want to do so much, share my stories with the world, and now I can hardly get out of bed. It’s invisible, but incredibly real, and I’m not the only one.

Here are ways you can show support for those struggling with this disorder, not just on May 12th, but throughout the month and after (Taken + edited from Awareness Days UK):

Think Purple 
Wear a purple fibromyalgia shirt, bracelet, hat, etc., not to draw attention to yourself, but to spark a conversation about what FM is. Or just anything purple if you have it. If you have an outside light, change the bulb to a purple one. 

Create a Facebook Page (With your parents' permission first! Or have them make one for you)
You can post articles, graphics, links to your favorite FM groups or blogs, anything you can think of to help raise awareness. Post the link to your page on all your social media accounts (except here on NMG because social media links are not allowed).

Join some national organizations such as:
– National Fibromyalgia Association
– National Fibromyalgia and Chronic Pain Association
– Fibromyalgia Action UK
– Monthly newsletter sign up from Emerge AU

Join a live or virtual Together Walk
You/your parents can start or join a local fundraising event through a virtual walk.

Make Posters
With info about FM and put them up in local store windows, your school, libraries, or bookstores. Be sure to get permission.

Have a yard sale or garage sale
To raise money and awareness. Let people know where you will be donating the money you raise. Perhaps order some brochures to hand out. (And maybe involve your neighbors for a streetwide one) 

Share your story
You can write it out and email it to those you want to help understand what your life is like because of fibromyalgia. Share the symptoms and the struggles. Post a condensed version on social media, letting people know your goal is to raise awareness.

Whatever you decide to do in order to make your impact for those suffering from fibromyalgia, every little bit helps get the word out there and helps those who suffer from this horrendous chronic condition. 

Do you know someone suffering from fibromyalgia or a similar condition like chronic fatigue? Or are you yourself dealing with a chronic pain illness? Share your thoughts and experiences below :) And feel free to ask questions about fibromyalgia if you have them! I just have my own experience and my research, so also feel free to do your own information hunting.

Sources/More info:
https://fibromyalgianewstoday.com/2017/05/08/international-fibromyalgia-awareness-day-may-12-spread-the-word/
http://www.fmaware.org/
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

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Replies

  • It sounds awful and I think my grandma has a type of it but I am not sure.
  • I'm sorry, Katharine. It must be so painful. I hope you don't experience this for much longer. No one should live with such pain. <3333
  • This sounds AWFUL. I hope yours isn't lifelong. Hmm...I'm wondering if sometimes I get it, just a little.
    • Mod S2S Mentor
      Thanks Caroline <3 Well, occasional aches and pains doesn't mean you have the condition, as it's not something you can get just for a little bit. Symptoms of fibro are often symptoms of other conditions (as there's like 60 possible symptoms), which is why you get tested for other things to make sure it's not something else. While feeling exhausted/fatigued/in pain once in a while is generally normal (depending on what caused it), if you have any abnormal symptom(s) for a while that don't seem right, I'd check with your parents and see a doctor just to be sure <3
  • I told my friends, and am planning (hopefully, fingers crossed) to tell my class! I want to raise awareness about this!
    • Mod S2S Mentor
      Oh my gosh Emily ;A; I honestly wasn't expecting anyone to go and spread the news about this, I just, I'm so happy?? Thank you so much for wanting to help and going out to do it, it means so much you don't even know <3333
      • You’re welcome! UwU. This is important, and more people need to know about it!
  • My grandma has this.
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