Welcome to Living with Fibromyalgia Patient Support Community!
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.
This is an online support group for patients, friends and families affected by Fibromyalgia.
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
- How to cope with young diagnosis?by FlorSilvestre12 on August 12, 2023
One of the things I struggle with the most is having debilitating fibro decades before average onset (I’m in my late twenties). It makes me feel like I’m losing so much more of my life than even people with this condition are supposed to lose. Every time I tell someone I have fibromyalgia and they remark “But you’re so young!” it hurts. Sometimes I find myself wishing I was old, so I wouldn’t have to deal with this for all these extra decades. I’m approaching the one year anniversary of my diagnosis, and it’s hard for me to picture living like this for even ten more years. I […]
- Hi, I’m M from the United States. Diagnosed at 28by FlorSilvestre12 on August 12, 2023
Hello, I’m M (he/she/they). I’ve been hypersensitive to pain my whole life but was mostly able to live around it until 2022, when my pain stopped going away. I lost my last job in the spring of that year and have been unable to return to work. I was diagnosed with fibromyalgia and myofascial pain on Halloween of that year at the age of 28 and began applying for SSDI and SSI with the help of a lawyer in December 2022. I’ve been in and out of physical and occupational therapy and have tried many medications under the guidance of both my primary care doctor and doctors and nurses at a pain […]
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% of rare genetic disorders start in childhood. Similar to Ben’s Friends other support communities, membership is free. The community is a safe place to express yourself and ask for assistance. Participation can be anonymous. There is […]
- Heads up! Happening soonby Ben on August 7, 2023
One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of livingwithfibro.org and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on “Community” and you’ll be on the old familiar page again. So why are we doing this? Well, there are a few reasons: We want to give a first impression of a community that is dynamic and welcoming to newcomers, something that we’ve heard that the home […]
- 7 Things to Look for When Choosing a Doctorby BF_Writer on June 6, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. Since many of our members deal with rare diseases, they often encounter medical practitioners who know very little about their condition. So instead of just being recipients of care, patients should […]
