Living With Facial Pain 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.
Chronic facial pain syndromes effect as much as 1% of the population. Two of the better known conditions are Trigeminal Neuralgia (TN) and Glossopharyngeal Neuralgia (GPN) even though they are among the rarest. Pain specialists have attempted to classify other Facial Pain Syndromes by a number of names including atypical facial pain, Type 2TN, Type 7TN, Atypical Trigeminal Neuralgia (ATN), Trigeminal Neuropathic Pain (TNP) and Atypical Facial Neuralgia (AFP). Recently the term Persistent Idiopathic Facial Pain (PIFP) has been used to describe facial pain that is continuous or lasts most of a day. There simply is no consensus, even among practitioners.
While this site continues to provide Support for TN and GPN, we have come to realize that many other facial pain patients attempt to deal with their disease within the GPN or TN communities. While there is much in common in dealing with the day to day challenges off Chronic facial pain, there is often frustration among the groups when it comes to treatments both drug, surgical and other interventions. For that reason, we have expanded our opportunities for continued Peer to Peer support to include other Chronic facial pain syndromes. We have chosen to lump them into the Persistent Idiopathic Facial Pain category, while maintaining both the TN and GPN categories.
LivingWithFacialPain.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
- Practitioners don’t know what to doby cathieebee on March 25, 2025
Hello, Long story short, I was involved in a car accident, which led to being diagnosed with trigeminal neuropathy after having spent 4,000 dollars in dental surgeries, sought out six dentists, two endodontists and one maxiofacial oral surgeons. I started on 10 mg of nortriptyline and began seeing an oral facial specialist (chiropracter). After i stopped seeing the chiropractor, i realized a lot of the pain was due to her touching my face. I am now on 50 mg of nortriptyline, and I’m feeling […]
- Volunteer Opportunity: Marketing Manager (Email + Social Media)by Ben_Munoz on March 11, 2025
Do you have experience with marketing and a knack for crafting engaging content? Ben’s Friends is seeking volunteers for two distinct Marketing Manager roles—one focused on email marketing and the other on social media. Both roles play a vital part in helping us communicate with our members and supporters. Key Responsibilities Email Marketing: Create and manage regular email newsletters, primarily using the email marketing platform Kit. Social Media: Develop and schedule content across […]
- Getting off medicationby Helen1 on January 3, 2025
I have been suffering for 14 years now. Though way more under control and on minimal meds I do wonder if I will ever not need them. I have whittled the cocktail down to low dose amitriptyline for about 6 years now. Iv had a review gp couldn’t really be bothered to discuss it and signed me up for another prescription. I worry getting older. I am different now after all the years of treatments and what these meds may have done to my brain. I’m 48 now and perimenopausal and wondering if […]
- Last Chance to Support Ben’s Friends in 2024 – Every Donation Counts!by Ben_Munoz on December 30, 2024
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and it lays the foundation for the vital work Ben’s Friends will accomplish in 2025. While we haven’t quite reached our campaign goal yet, there is still time for you to help. 1) Donate Today With just two days left, your donation can make a lasting impact. Every dollar […]
- From Isolation to Connection: The Role of Community Supportby Ben_Munoz on December 19, 2024
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our community members. In just a few moments, she captures the essence of why your support for Ben’s Friends is so crucial. Watch Jaz’s Powerful Message Now Jaz’s words remind us of the profound difference we make together. Your donation helps transform loneliness into […]
