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
- Sphenopalatine nerve radiofrequency therapy did not help with my atypical facial painby Justin on September 13, 2024
Hello everyone, I am Justin, a patient from China, because of persistent upper gum swelling and pain, I had a sphenopalatine nerve RF pulse this week (they don’t do radiofrequency thermocoagulation here, that will damage your nerves), the operation was under local anesthesia, I can communicate with the doctor, the RF needle entered from near the cheekbones, after locating my gums, the treatment started 2 times, 5 minutes each time, I could feel the constant beating current on the gums. The […]
- Suffering Sucksby KM1 on August 5, 2024
Continuing the discussion from It’s time for MVD: Hi Amanda, I’ve had bilateral TN for many years. I had the Rhizotomy procedure on my right side at Lahey Clinic- Burlington Ma., because I felt at the time, it was the less invasive procedure before I considered anything else. It has been successful since 2014. Yes, I have some numbness on the right side of my face, but I have gotten used to it. No pain! I had my MVD surgery at Lahey Clinic in Burlington Ma. in 2018 by Dr.Rhamachandran […]
- It’s time for MVDby Amanda7 on July 30, 2024
Been suffering with TN. Since 2017. It can no longer be managed with the meds I am taking. Doctor just upped my dosage again. Contacted the Mass General facial pain clinic to see if I am a candidate for MVD. My doc original referred me to RI for gamma knife. I read up on the Mass General program. Any advice? 12 posts – 6 participants Read full topic
- What is the general consensus of PRF – Pulsed Radiofrequency for ATN/TN2?by Paingoawayplease on July 29, 2024
Hello, My pain specialist proposes to to PRF, pulsed Radiofrequency. He stated that there is no chance of worsening pain. There could be a pain increase in the first few days after. The pain specialist is very experienced in patients with atypical odontalgia /persistent dentavoliar pain. I can find very little on PRF in the forums. I know the motto is dont treat dental injury with surgical procedures. Is there any literate/experiences available, besides the few u found on the search forum? Is […]
- Is painless twitching a sign of nerve recovery?by Justin on July 17, 2024
Hi all, I’m back again, it’s been almost two months since my last post and almost four months since my MVD surgery. At the moment I feel new symptoms, I can feel my left upper gingival nerve twitching in my mouth, if I close my mouth this feeling is more intense, but this twitching is painless, my wife thinks it is a sign of nerve recovery, but I am still upset, I don’t know if anyone here understands this twitch, any opinion would be greatly appreciated. 7 posts – 5 […]