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
- Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Communityby Ben on December 2, 2025
Hi everyone, Today is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options. 1) Share our campaign with friends or family This is one of the most helpful things members can do. Even if you cannot donate, you can still make a big impact by spreading the word. Here are a few copy-and-paste messages you can use. Email or Facebook: I am part of a rare-disease support community that has made a real difference in my life. If you are able, would you consider supporting Ben’s Friends […]
- Our Community Is Coming Together. Here Is How You Can Helpby Ben on November 25, 2025
Hi everyone, As we approach the end of the year, our entire Ben’s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can help strengthen this space we all rely on. Most importantly, there is never any expectation to give financially. Just being here, supporting one another, and sharing your experiences already makes this community special. If you do want to be involved, here are a few meaningful ways to support: Share your story Member stories are at the heart of this campaign. Sharing what […]
- Fatigue flare… – Relax!by JayCS on September 24, 2025
I just caught myself tensed up while disinfecting my bird baths and feeding bowls… That increases fatigue with feeling sick/ill plus slight nausea and pain, mainly after the tension resolves: post exertional malaise. In many situations I’ve learnt to relax unconsciously, so don’t need to remember. But some I do, and being in a fatigue flare for a few weeks, I need to remember this more. Yesterday I needed to talk with a phone company, and was surprised how well it went altho it was 15 minutes, usually well above my limit. But I remember I was in a relaxed mode, was well prepared, wary / […]
- Lactulose as a laxative is good for blood lipids too, and a prebioticby JayCS on September 4, 2025
I was looking into these detailed posts of mine about magnesium cos of now needing a laxative… Medications – Other Options (incl. Magnesium types – detailed) Complementary Therapies The various lists above have made looking up the types complicated, here it’s re-arranged & bits added: After all is said and done it still looks to me as if magnesium malate & (bis)glycinate are best for FM. Firstly, things that can be said about magnesium generally are: improves mitochondrial activity, e.g. energy. It’s important for so much (muscles, […]
- Leg Exercise Machineby rosebud74 on August 28, 2025
I use a leg exercise machine. It is electric and you put your feet on the foot plates and your legs and feet just glide back and forward. I have had this for many years, which is a tremendous help to me when my legs hurt so much that walking is difficult and I am too tired even to go out. I used this machine this morning and put it a little way forward so my legs and knees stretched. As the plates guided back and forward I tried to swing my arms at the same time. Within 10 minutes both my legs and arms were without pain. This saved taking more painkillers. You can get this machine from Amazon […]
