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
- Interstital Cystitisby rosebud74 on June 7, 2025
I have just looked on previous posts for this illness, which has helped. I also suffer from Pancreatic Insufficently together with Chronic Pancreatitis. (My body does not produce enough enzymes to digest food.) This is also very painful if I do not take the right amount of enzymes when I eat. It is very hit and miss on how much to take. Since Good Friday I have had 4 UTIs and 3 lots of antibiotics. Last Saturday my Dr phoned me and when he told me I have got Interstital Cystits as well as Fibromyaliga. It just pushed me over the top! Apart from antibiotics and pain killers and drinking plenty […]
- How Are You Today?by Mary_M on June 6, 2025
Hi all I have been off Chatline for a few years. Hi to all. I am settling a lot more. Had Covid booster and was terrible for only 1 day?? Surprising for sure. Terrible drought in South Australia but finally we have rain. Depression is the worse thing for me. I have been up and down all my life. Today ok. Here we are in 2025 and I am going quite well except the lack of understanding of others. I must stop sharing with others as i feel like a moaner. I take antidepressant and o.t.c. Panadol. Able to walk quite well in parks, along the beach. Went away for 3 weeks motoring in New SouthWales so […]
- Pain Meds – What Works For You?by Barb3 on June 5, 2025
Hi my name is barbara i have had fibo for 15 yrs i have tried pain meds exercise cymbalta and lyrica i was allergic to cymbalta–the lyrica 200 mg a day helps some but i still have a lot of pain. my question to group have you found other things that work? 4 posts – 4 participants Read full topic
- How are you?by JayCS on June 2, 2025
What a question, ey? Regularly makes our head spin on overdrive! But seriously: how are you today? Any good moments to look forward to? I started the day weary as always, but have managed to poke my head outside quite a bit for fresh air and sun, and feeding our two guinea pigs is always a joy as well as a chore, cos of they’re joyful squeaks when they’re getting fresh food. Now need to get fresh and outdoors quick! 1 post – 1 participant Read full topic
- Welcome New Members!by VisitingModerator on June 1, 2025
Hi all, It seems really rather quiet round here, so I thought I’d lift my head above the parapet for the first time in a long time and welcome the new members who joined through March/April/May. If anyone who joined earlier than March wants a bit of a “Hello!” please just say and I’ll do you a welcome. First, a tiny about me. My name is Richard and I’m a moderator on one of our other rare disease support forums. I’ve been hanging around one or more of Ben’s Friends patient communities for up to 8½ years. My home community is https://avmsurvivors.org and we have quite a lot […]
