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
- Volunteer Opportunity: Marketing Manager (Email + Social Media)by Ben on March 11, 2025
Do you have experience with marketing and a knack for crafting engaging content? Ben’s Friends is seeking volunteers for two distinct Marketing Manager roles—one focused on email marketing and the other on social media. Both roles play a vital part in helping us communicate with our members and supporters. Key Responsibilities Email Marketing: Create and manage regular email newsletters, primarily using the email marketing platform Kit. Social Media: Develop and schedule content across our social media platforms to engage our community and raise awareness. Qualifications Email […]
- Personality and Fibromyalgiaby SophieJo on February 2, 2025
I am interested in finding out how closely the community here, align with the following symptoms… 21 Personality Characteristics often associated with Fibromyalgia: Has a low self-esteem Is a perfectionist Has high expectations of one’s self Wants to be good and/or be liked Feels dependent on others Is conscientious Has strong feelings of obligation Pleases others to try to gain favour or avoids others to avoid getting hurt Tries hard Is hard on one’s self; self-critical Is overly responsible Has difficulty making decisions Follows rules strictly Has difficulty letting go Feels […]
- The neuroscience of chronic painby SophieJo on January 26, 2025
Hi Everyone, I am new here and new to having any type of support for my fibro. I have also had Fibromyalgia for 35 years. I was wondering if anyone has come across the neuroscience of pain which involves unlearning your pain (e.g. Dr Howard Schubiner’s research) and brain retraining (e.g. Dr Caroline Leaf’s research)? If so, have you tried any of the recommended methods? Have you had any success for your Fibromyalgia? I would love to hear your feedback on this. Breakthrough with Healing Chronic Pain | Howard Schubiner | Talks at Google 16 posts – 2 participants […]
- 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 […]
