Online Support Group for Chronic Pain Launched

Online Support Group for Chronic Pain Launched

By Ed Coghlan

I was driving with one of our columnists to a meeting this weekend in Southern California and we discussed a number of things, including the isolation that people with chronic pain often feel. Friends and family often don’t really understand what a chronic pain sufferer is going through.

As Rachel Noble Benner wrote in the Washington Post last year “I have worked with people who had full, rich lives as corporate leaders, mothers, athletes and professors before their chronic pain. However, by the time I saw them they were isolated, overmedicated and depressed, and they believed their life was devoid of meaning.”

It’s that sense of isolation that a New Jersey-based non-profit is trying address. Livesupportgroup.com has been started for a very simple reason, to let people with chronic pain get online and talk with each other.

Robin Viola-Pfeffer is the founder and in an interview with the National Pain Report she said, “Social media doesn’t really let you have a conversation—you can comment and others can comment—but a real support group where you can talk with others didn’t exist. We felt it should.”

There are two groups, one on Wednesday and the other on Saturday that meet online and discuss issues of importance to them.

“We have about 300 people signed up—all suffering from chronic pain— and it’s growing fast,” she said. “It’s free, easy to join. It’s been amazing to watch and listen as these groups have developed. People are being helped. There’s nothing quite like peer-to-peer support for chronic pain sufferers.”

Viola-Pfeffer has suffered from Crohn’s disease for 40 years. She and her husband Adam Pfeffer, who serves as CEO, believe the effort can grow.

Steve Ariens, a retired pharmacist who is a contributor to the National Pain Report, has joined the effort. He sees an opportunity for significant growth.

“We are going to launch a third group designed to attract people with fibromyalgia and chronic fatigue,” he said, which is expected to be up and running by the end of March.

Signing up is very easy. Simply register at www.livesupportgroup.com. It’s free. You don’t have to give your full name. It’s designed to be a safe place.

If you choose to participate, let us know what you think about the experience.

By the way, Viola-Pfeffer and Ariens both indicated that they plan to offer their digital infrastructure to other non-profit groups.

Chronic pain affects more people than cancer, diabetes, heart attack and stroke combined. The Institute of Medicine estimates there are more than 100 million sufferers in the United States, costing the nation as much as $635 billion a year in medical treatment and lost productivity.

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Authored by: Ed Coghlan

There are 8 comments for this article
  1. Susan Dixon at 2:49 pm

    I am a member of Live Support Group.com, which is wonderful. Due to the article published by the National Pain Report about Live Support Group.com, I’ve now signed up with NPR to receive their newsletter. I enjoyed the article about LSG very much.

  2. Martha Arntson at 7:07 am

    I see my P.M. nurse tomorrow, she had asked me to compile a list of information for her as to where I read articles on P.M., the CDC’s involvement in the new “addiction movement” to stop prescribers from treating their patients as outlined in the manuals for Pain Management Professionals. So I am writing to see if anyone has any other outlets for talking about these issues? Thanks

  3. Chris at 8:22 pm

    I am new to this group, and I would like to Thank you Ed for posting this information. And Thank you Robin for caring enough to start this, and all the others who do what you do. I did not know what to think about something like this, how free I would feel about sharing. What struck me at first was, to hear my thoughts; hear my days described, in another person voice. Being armed w/ the knowledge that my experience is not unique. I do not have to try and explain, then justify, my condition; situation, knowing that unless they have chronic pain, they will not truly understand. And, each time I have been apart of a the group, I leave w/ useful information. Just to be clear I am not someone who has done this before, I have left feeling better. So again I would like to Thank everyone.
    Chris

  4. Elton L. at 7:42 pm

    I’m just giving an updated comment about how the group has been helping my issues with my chronic pain situation. My name is Elton from Virginia and I’m so happy to be a member of this non profit organization in so many ways and I really have to thank Robin and Adam for taking the time to develop Live Support Group because it really is a place that everyone shares each other’s complexed health conditions new techniques that may help ease pain and Steve is a very knowledgeable profession pharmacists that keeps you in the know about sideeffects both good and bad and he has a great sinceof humar! Everyone on the site respects, care and loves one another and it is a very special family and I’m proud to be a part of. So it will definitely benefit you by becoming a member of Live Support Group. So come join the family!

  5. Jean Price at 1:48 pm

    Dr. Coney…it’s nice to see doctors helping their patients—and also all of us with chronic pain by their interest. That type of support is so needed, and often lacking. And doctors are also in the cross hairs regarding treatment that includes all helpful modalities, even opioids. Thanks, it gives us hope just to see you care.

  6. Heather J at 11:49 am

    What a breath of fresh air to connect with others who understand. I look forward to joining in one or more groups. Thank you so much for this resource!!!

  7. Jean Price at 10:08 pm

    So many times I’ve wanted to ask a question or share something on this site. But the comment set up isn’t as targeted to that. Your group sounds like it will certainly fill a need. As you doing any PSA on it for the general public who may not know about it or be on social media a lot?

  8. Dr. Michael Cooney at 8:04 am

    Ed,

    Neuropathy, like many chronic diseases, isolates the patients who most need support, kindness, resources and a kind ear. It prohibits many from attending live pain support meetings (although they, too, are emotionally and pragmatically valuable). I will certainly share your new support group site with my patients.
    Dr. Michael Cooney, Clinical Director, Calmare Therapy NJ