Finding support for Fibromyalgia? Connect with people like you.

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.

Read More…

 

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

  • I’ve been gone a long time
    by Freedom on April 5, 2024

    I haven’t been on this site for soooooooo long. And I miss it a lot. I couldn’t remember my password. I didn’t recognize the home page. It was strange But, when I saw some of my fibro friends/ family were still here, I knew I was home. I still have fibromyalgia. I now have awful migraines and occipital neuralgia. Uh. I had an occipital nerve block about 6 weeks ago that was successful. But, last Saturday, when I was taking a nap, I accidentally pushed my head into the end of the couch which caused a migraine. I’ve had 4 migraines since then. I get discouraged more easily […]

  • Interstitial Cystitis and Increased Nerve Pain? What’s helped you?
    by SaraZ553 on January 23, 2024

    I have Fibromyalgia, chronic pain and my nerve pain has been exceptionally bad for over 6 months. I was recently diagnosed with Interstitial Cystitis (chronic bladder inflammation). My doctor advised me that IC can have an impact on overall nerve pain in the body. I am wondering what you all have tried to help with IC pain and the increase in overall nerve pain associated with it? Also, I’ve had increased nightmares and worse chronic fatigue. I’ve tried medications, natural sleep supplements/vitamins, relaxation music/meditations before bed, a “nightmare pillow” filled with lavender […]

  • Upper back and chest pain
    by Norma on January 17, 2024

    Has anyone ever experience a sharp pain in they’re upper back, chest, and side under the arm? It almost feels like a pulled muscle but I haven’t done anything for it to be hurting. This pain is kind of intense and I don’t know what causes it. Some times muscle spasm in my arms accompany this. 8 posts – 5 participants Read full topic

  • New to the Group/ my journey
    by Scoronado0881 on January 14, 2024

    Hello! I just want to start by disclosing that I haven’t had my first rheumatology yet, but if it isn’t fibro or auto immune, than I don’t know what else this is! I’m scheduled for FEB. 5, but on a wait list for earlier appointments if one opens. My journey started in 2014. I always had muscle and joint pain. Never localized to one area. Joints and muscles everywhere are stiff and painful. I suffer from crazy fatigue all the time. I mean I can get 8-10 hours of sleep and wake up feeling like a bus hit me! I also wake with pins and needles or numbness in both arms elbows to fingertips […]

  • Looking For Your Fibromyalgia Stories!
    by ModSupport on January 10, 2024

    @trust_level_0 Dear Fibromyalgia Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly from you, our members, to ensure the information is authentic and speaks directly to the reader. […]