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
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
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
8. “Be gentle and kind to yourself.” —Diane Jones Mangum
9. “Sleep, sleep and more sleep.” —Cindy Sue Stingle
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
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
15. “Never ever give up!” —Susan Wade
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
18. “This is real… you’re not going crazy.” —Beverly Chupik
19. “Do not fight your fatigue; it will roar back and you’ll be worse.” —Dottie Jones Finnell
20. “Pace yourself.” —Alicia Franquero Tavis
21. “Warm baths will be your best friend.” —Deeps Jani
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
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
For more information, be sure to visit the National Fibromyalgia Association’swebsite 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.