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
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby Ben on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that no one faces a rare disease alone. Thanks to donors like you, we have recently: Redesigned our community sites for easier navigation Launched the Warrior Moms support site for caregivers Created an online training facility for moderators and interns But there’s so much more to do in 2025, and we need your help to make it happen. With less than […]
- Ketamineby Dawnie on November 10, 2024
I am trying to get ketamine therapy because they promise amazing results. I live in Bar Harbor Maine which is conservative regarding meds and am treated like a drug addict. Although I am in so much pain and have suicidal ideation often I get no help. Has anyone tried ketamine therapy?Does it help? I take oxycodine, antidepressant, a lot of Tylenol but often can’t get out of bed. I have no quality of life. 4 posts – 3 participants Read full topic
- Anyone else have a fake knee?-Flare effecting itby Heatonpatti on September 14, 2024
Lost track of number of days now in flare but yesterday I woke up to yet another new symptom. The outside of my left leg was extremely tight as well as my thigh. I could feel it at my hip and in my knee. Along with that came significant stiffness in my leg and my knee as well as it felt like it was tightly wrapped with a band. i did not have any of these symptoms or any problems with this joint since replacement. Due to the nature of the symptom I was thinking IT Band Syndrome. Today the outside of my leg is not as stiff as yesterday but still pretty stiff as well as my fake knee is […]
- New Here- Day 14 of Flare- Concernsby Heatonpatti on September 11, 2024
Hi everyone, this is my first post. My name is Patti and I am 54 years old. I have been suffering for 24 years with chronic pain. So 24 years of untreated Fibro, I can’t seem to find any information that explains the outcome of that. I recently had 2 major life events happen at once, Very emotional events. Needless to say I went into a flare. Today, day 14, I have improved physically and mentally just a bit over the last 6-7 days. My concerns are the lingering affects. Less mobility, stiffness, partial numbing of left leg, both hips flexors, brain fog. oh and my feet!! OMG MY […]
- How to cope living with fibromyalgiaby Arrowsmith25 on September 5, 2024
Continuing the discussion from Is anyone else having trouble with this web site? I cant get into chat and it says 2 members on line but doesnt show who.?: 2 posts – 1 participant Read full topic