The Smart Patient's Guide to
Chronic Pain Management

Support Groups for Pain

Whether in person or online, finding a like-minded support group can help you uncover new pain-relieving techniques and give you the boost of an instant community.

 

Gwenn Herman has tried many medications and techniques to relieve the chronic pain she has lived with since being involved in a serious car accident 25 years ago.  Of everything she’s trialed, she says that a well-run support group is one of the most effective ways for an individual to cope with pain. At these groups, participants share their experiences, learn techniques such as meditation and mindfulness training, and draw comfort simply from being with others in a similar situation.

“Pain can be isolating and depressing, but a support group offers love, compassion, and understanding,” says Gwenn, LCSW, DCSW, founder and clinical director of the Pain Connection, a program of the U.S. Pain Foundation. “People in pain are constantly being judged by those who don’t have pain. People think you are fine because pain is invisible. In a support group, you are with others who know this isn’t true.”

Through Pain Connection,  which offers support groups trainings, specialized classes, and a newsletter, Gwenn, who lives in Tucson, Arizona, provides two-day training workshops to those interested in leading a support group. Additionally, Pain Connection offers 19 face-to-face support groups across the country, and for those who are unable to leave their home due to disabling pain, also runs call-in support meetings several times per month. See more details below.

Patients and Caregivers Leading Support Groups

Whether online or in-person, support groups can help you build a community around pain experiences and solutions. (Image: iStock)

Support groups help people to manage their pain, shares Richard A. Lawhern, PhD, of South Carolina, who has moderated online support groups for more than 25 years. “One of the things a support group can do is to help people in pain know they are not alone,” he says. “They can offer support to people in pain whose caregivers may be getting burned out and who may not always be able to rely on family members for support.” Dr. Lawhern, who does not currently run face-to-face support groups, does maintain a Facebook page on coping with intractable pain. “My Facebook page is an online support group,” he says. “It provides support services, information, and mutual support for the more than 4,500 people who follow it.”

One of the people Gwenn trained to lead a support group is Elisa Friedlander, who lives in Southern Oregon and who was diagnosed in 2013 with Complex Regional Pain Syndrome (CRPS) following complicated multi-level cervical spine surgeries, which resulted in failed fusions and permanent spinal cord damage. Before she moved to Oregon in 2017, Elisa lived right outside San Francisco and was trying to figure out how to live with her new level of pain from CRPS. “I really needed to meet people who knew what it was like to live with intractable burning nerve pain,” she says. “Shockingly, I couldn’t find anything in the Bay Area except online, so I started my own group for people with CRPS.”

After moving to Southern Oregon, Elisa took Gwenn's training and started a support group for people with all diagnoses and types of chronic pain.  Since the group began six months ago, it meets once a month in a community room. “There is a sense of community and a sweetness to the meetings,” Friedlander says. “It is a time for learning and sharing.”

In the months that she’s led the support group, she has seen the members become close. “I created a space for the grief and the hardship, but also for hope and encouragement,” she says. “We aren’t trying to fix anyone but just trying to help people along through this.”

Each meeting closes with Elisa teaching the group a mind-body practice like a guided meditation or a deep breathing technique. Her support group may include as few as four or as many as 10 people. No matter how many attend the meeting, Friedlander says everyone takes away something positive “I'm never concerned with numbers, because they don't reflect the value of the group,” she says. “More attendees means more people getting support, while a smaller group allows opportunity for more sharing time and intimacy.”

Like Elisa, Bobbi Blades also enrolled in Pain Connection’s training in how to lead a pain support group; she completed the course in 2016. In addition to the rheumatoid arthritis she has had for more than 20 years, she lives with a herniated disk and spondylolisthesis - a pinched nerve in her back makes it extremely painful to stand for more than a few minutes. She mostly uses a walker or a wheelchair to get around.

“Back in 2016, they were already cutting back on the pain medications that helped me function by regulating my pain.” Bobbi recalls. “They were started giving me epidural, or spinal, injections in my spine and cutting back on my opioid pain medication. I said to one doctor, ‘There must be more options available to people me than just meds and injections,’ and he suggested contacting the U.S. Pain Foundation.”

After her training, Bobbi started a pain support group near her home in Concord, New Hampshire. “Our group involves listening to each other and sharing ideas,” she says. “It’s not about advising others but about learning together with a positive focus. We support each other.”

When new people come to a support group meeting, she says, they feel supported and less alone when they find others in the same situation. They may have friends and family members who don’t fully get what they are going through, and providers may not always provide effective treatment, she says. “We hear a lot of desperate voices,” she says. “There are even some people, especially those who have been responsibly managing their pain with prescription medications, such as opioids, for many years, who say their doctor won’t  help them anymore, and have suggested that they should find a new provider who can treat them. Most attendees are looking for new alternatives.” The group meets monthly in a local church that is accessible and has free parking. Meetings are held in the early afternoon to accommodate people who may need more time to get out and about, but don’t want to drive at night.

Bobbi loves running the support group. “To be disabled was very difficult and isolating for me, but by doing this I gave my life purpose again,” she says. “To be able to help others has been very meaningful to me. When you are in pain, you are trying to find your value in interpersonal relationships and where you are in the world, and it’s nice to not be alone in this.”

Elisa says she is constantly surprised by how many people who live with pain don’t seek out a support group. “I always find it striking that people will put so much commitment into going to their doctor’s appointments but they don’t prioritize their emotional well-being and mental health,” she says. “There is only so much that medicine can do and at some point, you have to have a place where you can deal with the whole person.” For some, a support group might be just the place to start.

How to Find an In-Person or Online Pain Support Group

Pain Connection https://painconnection.org/ offers regular conference calls that are run like a support group but last for just an hour. The afternoon Pain Connection Live Conference Calls are held once a month: 1:30 pm EST on the first Thursday of each month and at 2:30 pm EST on the fourth Thursday of each month. On the second Thursday of the month, there is an evening call held at 7 pm EST. There are other calls as well. All calls and support groups are free, supported by the U.S. Pain Foundation, and significant others/caregivers are encouraged to attend.

A pediatric pain warrior group also exists under U.S. Pain at https://pediatricpainwarrior.org/.

Ben’s Friends offers online patient support communities for individuals living with various disorders, including fibromyalgia, arthritis, polyneuropathy, Ehlers-Danlos syndrome, chronic pelvic pain, and more. Recommended by Dr. Lawhern. http://www.bensfriends.org/

Patient Advocate Tom Bowen runs a Facebook group for those with non-cancer-based chronic pain and their caregivers www.facebook.com/groups/painchampions/

The International Pain Foundation has a list by state of support groups.

You can also ask at your local hospital about support groups, recommends Dr. Lawhern (who also shares support groups for those with facial pain, trigeminal neuralgia and geniculate neuralgia at http://face-facts.org/support/), and if you are in touch with a national organization with a focus on your particular type of pain, contact them to see about support groups. And, he adds, remember that online pain support groups can be a terrific resource for people who are housebound or don't wish to attend in person. “Large numbers of people with severe disorders are very limited when they are in pain and can barely get out of bed. Online support groups provide an opportunity to meet people at a distance who are able to talk and be part of a group.”

The Do’s and Don’ts of Pain Support Groups

Avoid groups promoting certain treatments: Avoid support groups or online sites that peddle so-called “alternative” treatments not approved by the FDA, or that urge you to take a particular medicine, Dr. Lawhern advises. Websites that make blanket claims based only on patient testimonials are also suspect, he says.  

Typically, talking about particular medications and medical providers’ names are off the table for discussion as well because the groups tend to on the psychosocial aspect of having chronic pain, Herman adds. Members often discuss coping strategies for dealing with pain, such as the stages of grief, listening to soothing music, aromatherapy, acupressure, meditation, breathing techniques, self-massage, and using adaptive devices, she says.

Follow the rules: Most support groups post rules that discourage comments on politics and religion.  Punishing language or publication of sexually explicit materials often serve as grounds for removal from the group. Although members frequently want to share experiences with drug effectiveness or side effects, competent moderators will discourage blanket advocacy of medicines by name or require references to authoritative medical sources, notes Dr. Lawhern.

Maintain your privacy: In the interest of privacy, group members typically use first names only, Herman advises. “If you don’t want to share, you don’t have to,” she says. Support groups are meant to give people hope and an instant community where they feel safe to share.

 

Have you found an online support group that has been particularly helpful for talking about with your chronic pain condition, or for coping during this time of social distancing due to COVID-19? Share the group to our editors at ppmeditorial@remedyhealthmedia.com and we may add it to this list. Thank you.

 

Updated on: 07/22/20
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