Welcome Members!

Welcome to Living with Central Pain Syndrome 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.

Life with Central Pain Syndrome is a dedicated patient-to-patient support community for patients and families affected by Central Pain Syndrome and Chronic Pain. LifewithCentralPainSyndrome.org is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with chronic pain disorders.

If you or your family has been affected by Chronic Pain Disorders, consider LifewithCentralPainSyndrome.org your second home. LifewithCentralPainSyndrome.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

Central Pain Disorder is an Umbrella term to describe chronic pain that occurs despite healing and with no obvious injury to tissues. This may be the result of damage to the nerves that transmit pain (neuropathic pain), but chronic pain also affects the entire nervous system, sometimes in a permanent way. many chronic pain disorders can manifest in a specific way and accordingly have a different name. These include Central Pain SyndromeAllodyniaComplex Regional Pain Syndrome(CRPS)Reflex Sympathetic DystrophyHyperalgesia and others The pain is real but the cause often unknown making it hard to treat. Any patient with a chronic Pain Disorder can find help and support here.

This site is a virtual 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.

Read More…

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 DISCUSSION

  • Spotlight on Our Moderators
    by BF_Writer on August 25, 2022

    Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think that’s one of the ways our forty-some community network is special. Each community reflects the needs of members and the personality of its […]

  • “Rare Diseases Doesn’t Have Us” – Foot and Float to Raise Awareness
    by BF_Writer on August 25, 2022

    Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”. We started the night before departing for Glacier National Park. McKenna caught her first West Slope Cutthroat Trout You Can’t Rollerskate in a Buffalo Herd! Nothing cooler than running into the main herd at […]

  • When “Rather Rare” Becomes “Done Well”
    by BF_Writer on August 25, 2022

    Ben Munoz – November 1, 2019 I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but also because that is what I call, “rather rare.” Imagine, if you will, that 8th grader, well into the school year, dealing with all of the middle […]

  • Our New Ben’s Friends Classroom
    by BF_Writer on August 25, 2022

    Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides. It will all be set up for independent learning, at your convenience. Of course, there are no grades and certainly no report cards. But there are […]

  • Spotlight on Our Board Member: John Stamler
    by BF_Writer on August 25, 2022

    Ben Munoz – November 9, 2019 John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast. John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what they believe in. He also talked about his experiences related to a rare heart defect which eventually led to his joining Ben’s Friends as a patient […]