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
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby Ben_Munoz on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that no one faces a rare disease alone. Thanks to donors like you, we have recently: Redesigned our community sites for easier navigation Launched the Warrior Moms support site for caregivers Created an online training facility for moderators and […]
- Pitty partyby Baukje on November 22, 2024
I’ve been in pain since july/august, it began with a pressure behind me eye, and gradually became pain on the left side. Atypical facial pain or tn2. MRI showed nothing wrong. Been on carbamazapine for three weeks now, but everytime i think it gets better,t the next day its worse. Normally, I’m a very positive and hopeful person, but over the past few weeks—especially these last days—that hope has been fading. The pain, the process, trying medications that don’t work, the diagnosis, […]
- Underbiteby JoyousJai on November 16, 2024
Hi. My name is Janice and I was diagnosed with TN in 2019. It went into remission for 3 years and now has decided to return. While doing some research I found an article about how fixing an underbite might help with TN. Has anyone heard about this? Has anyone had there overbite fixed and it relieved TN? 1 post – 1 participant Read full topic
- Carbamazepine positive experiencesby Baukje on November 4, 2024
Hi all, after many visita to different doctors and specialists, today i’ve been sort of diagnosed with tn2 or atypical facial pain. My pain is in/behind my left eye, left nosebridge en under my eye. I have a non stop feeling of pressure and my left temple hurts most of the time. I am getting an mri to rule things out. Finally after months of agony and fear. My neurologist prescribed me carbamazapine. I am hopefull i can get some relief. I was wondering if i could read some positive […]
- DTR Disclusion Time Reductionby Karily on November 4, 2024
Has anyone with TN tried the DTR Procedure with a dentist? If yes what was your outcome? Who did you see? How many times did you have to go back to the dentist? What were your TN symptoms? How much did it cost? Thanks in Advance for any information… Kari 13 posts – 4 participants Read full topic