Finding support for facial pain? Connect with people like you.

A welcome banner for Living With Facial Pain community featuring a hopeful patient and caregiver

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.

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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

  • Pain Flare up after being on Cymbalta for three years
    by Ann313 on May 25, 2024

    I was diagnosed with infraorbital neuroglia three years ago by a very capable and compassionate neurologist. I went on 60 mg of generic cymbalta and have been pain free with some very minor hints of soreness in the top of my left cheekbone (my one pain area). I suffered with burning pain there on and off for two years before my diagnosis and treatment. The generic cymbalta has worked so well with no side effects for three years. However, I do know stress is a trigger. Three days ago, I […]

  • My only symptom is numbness in the gums
    by Justin on May 22, 2024

    I am a patient from China and I have already introduced myself in a previous post. I had MVD surgery in March, my gums and tongue hurt before the surgery, and now two months after the surgery, I am left with gum numbness, although there is no pain, but the numbness is very irritating and frustrating. My surgeon said that some people had a remission period of up to 6 months (during the surgery the doctor said that my trigeminal nerve was compressed by an artery and had indentation). Today I saw […]

  • Has anyone noticed that the pain in the inside of the mouth disappears when eating?
    by Justin on May 11, 2024

    I was diagnosed with ATN and my symptoms were persistent 7×24 numbness and tingling in my upper left gums. I found the pain relieved while I was eating, and even felt completely painless. So for a long time, the doctor gave me a diagnosis of BMS, until I did a trigeminal nerve MRI. I now suck on candy every day, and it helps reduce pain. Has anyone noticed a change in pain when eating? 6 posts – 6 participants Read full topic

  • TN patient from China
    by Justin on April 25, 2024

    Hello, I just learned about this forum. I am a TN patient from China, it should be ATN and TN2.I read most of the posts and I feel like I’m not alone. Here’s my story. I started to feel numbness on the left side of my tongue in September 2023, and the dentist diagnosed me with BMS and said that it was caused by depression, which I did not agree with because I am an optimistic person. From January 2024, the symptoms progressed to persistent numbness and tingling in the left gum, which […]

  • I am Diagnosed TN Little Brother – trigeminal neuropathy and TMJ
    by Alihope on March 15, 2024

    Hello, First time posting! I am a victim of Dentists yet again hitting a nerve and damaging it leaving us with lifelong pain and suffering. Dentists then wonder why they are hated. I am 32M, healthy before my infamous dental appointment last year. I was living the life I dreamed in Sunny Southern California. Till that day, my 2023 was just me trying to find a solution to my pain. My work, life and enjoyment suffered considerably. I always wonder what I could have achieved in 2023 if it was not […]