26 People With Fibromyalgia Give Advice to Those Newly Diagnosed

Fibromyalgia may affect an estimated 10 million people in the United States, but because of its complicated and varying symptoms, many doctors don’t even understand what it’s like. Can you imagine getting a diagnosis for something your own physician can’t even explain to you?

In addition to fatigue, pain and problems with cognitive functioning, the uncertainty for those just learning they have the chronic condition can be both isolating and frustrating. Thankfully, there are plenty of people out there willing to help, and the online communities for the chronic condition are incredible resources for support.

The Mighty teamed up with the National Fibromyalgia Association and Fibro Today‘s Fibromyalgia Awareness page to ask their Facebook communities to share advice to those newly diagnosed with the chronic condition.

Here are some of their responses:

1. “Don’t let anybody make you think it is all in your head.” —Tudy Ellis


2. “Maintaining a positive attitude is tantamount to your health.” —Sonja Tapparo

3. “One day at a time.” —Karen Bond Hinson

woman on bench

4. “Don’t give up.” —Michelle Molhan Zang

5. “Educate yourself because many times you will end up knowing more than the doctors you go to!” —Lorraine Grecco

purple bokeh

6. “Put you at the top of your to-do list.” —Debra Siddall-Montanez

7. “Don’t beat yourself up for not being able to accomplish what you could in the past.” —Sally Seneca

clouds and sunbeam

8. “Be gentle and kind to yourself.” —Diane Jones Mangum

9. “Sleep, sleep and more sleep.” —Cindy Sue Stingle

pillows on bed

10. “Just know what works for one person may not work for another.” —Kate Fuller

11. “Get a strong support group, family, church or just one friend who won’t leave a relationship with you because you are ‘different’ now.” —Deb Maddalena

12. “Remember you are not alone in this fight. There are millions of us out there. We will always listen and never judge.” —Cheryl Whitwam Cook

flowers at sunset

13. “Don’t care about what other people think.” —Naom A Vell

14. “Hold on… it’s going to be a rough ride. Never lose faith and it’s OK to feel like crap sometimes.” —Cynthia Loya

woman covering her head with pillow

15. “Never ever give up!” —Susan Wade

Woman holding chalkboard over face

16. “Realize that because you look well, people and even family, will tell you to snap out of it. Ignore them.” —Millie Phillips

17. “Listen to your body and act accordingly.” —Terri Osborne

Woman in pain rubbing shoulder

18. “This is real… you’re not going crazy.” —Beverly Chupik

19. “Do not fight your fatigueit will roar back and you’ll be worse.” —Dottie Jones Finnell

crumpled paper

20. “Pace yourself.” —Alicia Franquero Tavis

Butterfly on branch

21. “Warm baths will be your best friend.” —Deeps Jani

Candles by bathtub

22. “Give medications and natural remedies time to work.” —Laura Jones-Brown

23. “Take the time to educate yourself.” —Jennifer Miller Tidstrand

24. “Walk as much as you can.” —Satya Susan Bain

Woman running on the beach

25. “Rest when you need to.” —Jenni Johnson Smith

26. “Find a doctor who is understanding and will work with you for your quality of life.” —Ciera Haynes-Brodowska

Doctor and patient are discussing something

For more information, be sure to visit the National Fibromyalgia Association’s website and Facebook page, and FibroToday.com on the web and Fibromyalgia Awareness Facebook.

*Some answers have been edited for brevity and clarity

Editor’s note: These responses are based on individuals’ experiences and should not be taken as medical advice.

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