Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Bellingham, WA

Were you understanding? Did you get it?
I used to get frustratated when my Mom when she took so long to get ready. I did not understand how one day you could be layed up and others you were fine. I apologize Mom.

December 8, 2021
 · 
Reactions

Answer Summary

Members reflected on whether they knew anyone with fibromyalgia before their own diagnosis, with the overwhelming majority saying they had... Read more

Members reflected on whether they knew anyone with fibromyalgia before their own diagnosis, with the overwhelming majority saying they had never heard of the condition or knew anyone who had it, leading many to feel confused, terrified, or isolated when first diagnosed. Several members shared painful memories of witnessing loved ones (mothers, aunts, grandmothers) suffer without recognition or support, often dismissed as hypochondriacs or told their pain was psychological, which deeply shaped their empathy once they experienced fibromyalgia themselves. A recurring theme was the invisibility of the illness, with many noting that even after diagnosis, friends and family struggled to understand because people with fibromyalgia often appear healthy on the outside, masking the daily reality of chronic pain, fatigue, and the emotional toll of not being believed.

A MyFibroTeam Member

Wow, I guess I am very lucky to have had two different doctors that had attended sponsored conferences on fibromyalgia and how to effectively treat us. And it taught that it is a Neuro Muscular disease. Or Brain, Nerves and Muscle disease that can also effect connective tissue. Because I cannot take nsaids pain control or 90% of narcotics they put me on immune suppressants. They help a bit when its winter and about 75% the rest of the year.
My family considers it a virus that you can catch like a cold or the flu, with the exception of two of my aunts that contacted the Fibromyalgia Treatment Group in Boise Idaho and asked for educational materials so the could learn about and be more supportive of me

December 12, 2021
A MyFibroTeam Member

My aunt had fibro. I am not sure when she was diagnosed. But when I was starting with symptoms, i remember people saying she was a hypocondriac and complained all the time. I knew she was telling the truth. Even when I was struggling to accept my dragnosis, I came across several people who had it. I accepted them quicker than my collegues.

December 10, 2021
A MyFibroTeam Member

No I knew absolutely no one who had Fibromyalgia from what I know Now most people don't tell people that they have Fibromyalgia because so many people don't understand at all.

December 9, 2021
A MyFibroTeam Member

Kimberly, so sorry that you don't have control over your pain. I never knew anyone with fibro, but now know many. I also have IBS osteoarthritis and now a new diagnosis of PLS. Some fibro people appear normal, but you don't see them when they get home. I try to do things but may pay for it the next day. Gabapentin has really helped my sciatic pain. Good luck.

March 11, 2022
A MyFibroTeam Member

I absolutely do not know anyone who had fibromyalgia and I never even heard of it actually. Once I was diagnosed then I had a few people at my church tell me they had it. They do not appear to have it as bad as I do seeing all the activities they are able to do. 2 of them said they only had Fibro. Everyone that told me they had it are in their late 70's and I wondered if their issues are really only from being older. Thru medical tests I found I have many different things wrong with me. Even these women have told me get more exercise, take naps & eat better. They weigh more than me! But even when I lost weight and wore a size 4, my symptoms never eased up. Due to a herniated disk in lower spine, I can not walk very long or my sciatica will act up and then I can barely walk and can not sit upright.

March 6, 2022

Related Questions

View All
A MyFibroTeam Member asked a question 💭
Walnut Creek, CA

A MyFibroTeam Member asked a question 💭
Jefferson, NY

A MyFibroTeam Member asked a question 💭
Western Cape South Africa

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In