Living with Fibromyalgia is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Fibromyalgia is a chronic and complex pain disorder that affects millions of people worldwide, with a higher prevalence in women. It is characterized by widespread musculoskeletal pain, tenderness, and heightened sensitivity to pressure and touch. The exact cause of fibromyalgia remains unknown, but researchers believe it may be a combination of genetic, environmental, and neurological factors. Trauma, infections, and stress have also been linked to its development.
Apart from the primary symptom of widespread pain, individuals with fibromyalgia often experience fatigue, sleep disturbances, headaches, irritable bowel syndrome, and cognitive difficulties, commonly referred to as “fibro fog.” Diagnosing fibromyalgia can be challenging as there are no specific laboratory tests, and symptoms can be subjective.
Treatment for fibromyalgia is typically multifaceted, involving a combination of medications, physical therapy, exercise, and lifestyle adjustments to manage symptoms and improve quality of life. Support from healthcare professionals, family, and friends is crucial in understanding and addressing the unique challenges faced by those living with fibromyalgia.
LivingWithFibro.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- Sore throatby SueT on January 7, 2025
Sorry not been around lately but have been feeling very sad and sorry for myself with everything going on. My aches/pains in the back and other places seems to keep increasing. I had to stop taking the Ibuprofen and Omeprazole as was making more pain below the belly button. So am back to no tablets except Paracetamol which doesn’t really help-only when have headache. Then few weeks back my stomach was acidy more than usual, coming up to the chest and throat. So, now my stomach isn’t too bad but the throat is still very sore and my voice is a bit croaky. It’s like I have a cold but […]
- Last Chance to Support Ben’s Friends in 2024 – Every Donation Counts!by Ben on December 30, 2024
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and it lays the foundation for the vital work Ben’s Friends will accomplish in 2025. While we haven’t quite reached our campaign goal yet, there is still time for you to help. 1) Donate Today With just two days left, your donation can make a lasting impact. Every dollar helps us support individuals navigating rare diseases, ensuring no one faces their challenges alone. As […]
- From Isolation to Connection: The Role of Community Supportby Ben on December 19, 2024
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our community members. In just a few moments, she captures the essence of why your support for Ben’s Friends is so crucial. Watch Jaz’s Powerful Message Now Jaz’s words remind us of the profound difference we make together. Your donation helps transform loneliness into connection, fear into hope, and isolation into community for those facing rare diseases. Thank you for being […]
- See How Ben’s Friends Changes Lives + Double Your Impactby Ben on December 16, 2024
Campaign Update: If you have already donated to the campaign, THANK YOU. We are well over $15,000 for the campaign and the Matching Gift Challenge is really heating up (over 20 donors have already had their donations matched). If you want to double your impact there is still time. Donate today! As we continue our year-end campaign, I wanted to share with you the incredible impact Ben’s Friends has on those facing rare diseases. Here are just a few testimonials from our community members: What Ben’s Friends Means to Richard See how Ben’s Friends changes lives – watch more of our member […]
- Exciting Update: Double Your Impact for Rare Disease Support!by Ben on December 13, 2024
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: Thanks to the incredible generosity of supporters like you, we’ve raised almost $11,000 towards our $50,000 goal. This is a fantastic start, but with just three weeks left, we still have a way to go to ensure we can continue providing vital support to our rare disease communities in 2025. Exciting News: Double Your Impact! An anonymous donor has stepped forward with an […]
