Finding support for Fibromyalgia? Connect with people like you.

A welcome banner for Living with Fibromyalgia community featuring a group of hands symbolizing unity

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.

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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

  • Tinnitus
    by SueT on June 5, 2024

    Hi all, Does anyone have problems with tinnitus with the fibro-along with everything else? I’ve have it for some years but just lately has got a lot worse and more annoying, especially at night. I have had a hearing test as I thought it might be too much wax, but he said they were all clear and suggested a cream just on the inside of the outer ear as I also have dry skin there. There is a lot of ‘whooshing’ and other noise and just getting too much. Anyone got any ideas? I try to ignore it but it does get too much. I have arthritis in my neck and jaw-maybe that is making things worse […]

  • Lupus (SLE) Research at Home Opportunity
    by ModSupport on May 6, 2024

    Have you heard? Ben’s Friends has partnered with Sanguine Biosciences, a provider of at-home clinical research services, to share an at-home study opportunity for those interested in advancing lupus (SLE) research. Together, we can make sarcoidosis research happen. The goal of this research is to allow researchers to enhance our understanding of lupus (SLE), in support of developing new diagnostic and treatment options for patients living with the condition. We’ve made it easy to participate. Collections can be done completely in the comfort of your own home. A one-time blood donation is […]

  • What are top 3 treatments that helped you?
    by Freedom on April 22, 2024

    Hi everyone, I just posted about how LDN, Myofascial release and Savella have helped me. Would any of you be interested in sharing what your top 3 treatments have been most helpful to you? And, you could also include why they were helpful? It could include sunshine to a specific supplement. There is no right or wrong answer. 6 posts – 3 participants Read full topic

  • Savella, LDN and Myofascial release has helped me
    by Freedom on April 22, 2024

    Hello everyone, I thought I would take a moment and share the top three things that have helped me the most with my fibromyalgia symptoms. I started taking low dose naltrexone about 4 years ago. This took the edge off the debilitating pain. Just the edge. It wasn’t the all in all. I take 4.5 mg every morning. Then a little over a year ago, I started physical therapy where I received myofascial release twice a week. This has been extremely helpful. My muscles, ligaments, and tendons will spasm or are generally tight or are not flexible. Myofascial release helps keep my body moving. […]

  • Advise
    by evetech on April 20, 2024

    need help, its regarding my medical leaves What can i provide to make aware of discrimination towards my health, my family status 3 posts – 3 participants Read full topic