Welcome Members!

Welcome to Living with Facial Pain Patient Support Community!

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

  • Disability Difficulties
    by myfacehurts on October 18, 2023

    Hello, all! This is my first post but Lord knows I am not new to facial pain. I’ve been on a nearly 8 year journey to find relief. In the past couple of years, I’ve become unable to work full time but I do maintain VERY part time work as I need some funds to live on as I’m navigating this disability process. I have applied and been denied social security disability and I’m currently seeking the help of an attorney, so if anyone has recommendations in the Columbus, Ohio area, please let […]

  • 📢 Calling mothers of children with rare diseases of all ages
    by ModSupport on August 12, 2023

    Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% of rare genetic disorders start in childhood. Similar to Ben’s Friends other support communities, […]

  • Deciding to have tooth extracted or not
    by Swarls on June 10, 2023

    I am looking for opinions here, what would you guys do? There are no signs of inflamation in the gums and my dentist and specialist has told me everything looks good… But i am in so much pain, especially as soon as i speak or smile, if my tongue touches the gums on the backside of my dental implant/front tooth or if my lip rubs against the gumline on my left front tooth. I´ve gotten to the point that i am forced not to speak to my own daughter because it hurts, and she is only 9 years […]

  • Botox for TN2
    by Pacey on May 28, 2023

    I have TN2. Has anyone had Botox for it. If so did it work, how long did it take to work and did you have any side effects. Thanks. 9 posts – 7 participants Read full topic

  • 7 Things to Look for When Choosing a Doctor
    by BF_Writer on May 19, 2023

    Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. Since many of our members deal with rare diseases, they often encounter medical practitioners who […]