Are you interested in starting a local CRPS or Chronic Pain Support Group in your city or town but aren’t quite sure how to go about doing it?

We hear from patients all the time who are fired up about helping their fellow CRPS and chronic pain sufferers and want to get them together to meet, share ideas, tips, strategies, and even listen to speakers, but just need a few good ideas about how to get things off the ground.

Let’s start with these:

SUPPORT GROUP STARTER TIPS

1) Decide what type of group you would like to have: CRPS patients only, all chronic pain, meetings once per month, every other month, etc. These will be rough guidelines because they will change as your membership expands and you get input from the members on how they want the group to evolve.

2) Contact your local newspaper and/or television/radio station about doing a human interest story about you. Don’t be afraid to put out the details on your journey with the disease. It may help you find some fellow CRPS and Chronic Pain patients in your town. Let them know how to contact you through an email address or phone number. This will not only bring awareness to the CRPS Community but it will also generate awareness of your new group in your own community. Feel free to use our website as a reference tool for the article and/or contact us for any quotes.

You will need a couple other patients/loved ones to run your group and this is an excellent way to find them. Also discuss with the newspaper the possibility of their putting a weekly notice in there about your newly forming group.
You might also want to post a notice about your group forming on Meetup.com

3) Find a location for your meetings. It could be at your physicians office, a local eatery, the library that has a meeting room, perhaps a local hospital or hotel will let you use one of their meeting rooms. Try to find someplace where there is no or very little charge for the space. The less you have to worry about money from the beginning the better.

4) Get a copy of the National CRPS Awareness Ribbon and print flyers to post at the Pain Mgt. Clinics, Neurologists, Physical Therapists, Hospital Therapy Centers, churches, local colleges, library, anywhere in your town you think there might be CRPS and/or Chronic Pain patients passing through. Talk to these people, let them know what you are doing and ask them for their help in letting patients know about it.

5) Talk to the other support groups in your town or city and ask them what they do that works! Doesn’t matter why type of support group it is. Call them ahead of time and ask if you can sit in on their next meeting, see how it is run and then talk to the leaders afterwards. The best path to success is to copy others’ success! You can find other types of support groups in your community by checking your local paper, MeetUp.com, your local library, there are lots of places that share information on support group meetings.

6) Educate yourself! You won’t be expected to know everything about CRPS and/or chronic pain just because you decided you wanted to start a local support group and help the local patients get together and support each other, ha ha, don’t worry. But you should have a basic knowledge about the disease and know where to get more information.

Feel free to share links to this website, discuss what some of the information is that can be found there, get some of the brochures we offer and share them, get information about various topics that your members might be interested in and prepare some basic talking points for different meetings; i.e.Nerve blocks, biofeedback, ketamine, upcoming medications, the role diet plays in chronic pain, massage, vitamins and chronic illness, HBOT, Stages of CRPS, Symptoms of the disease, Differences between Type I and II, Fibromyalgia Tender Points, and so forth.

You just need some talking points to get the ball rolling and then once it starts the group will take it from there 😉

WHAT TIPS DO YOU HAVE TO SHARE?

7) David wrote in that if you can connect with other group leaders in your state you can have monthly “chats” via phone or computer for the leaders to share tips, information, and ideas to help strengthen and promote your group and sometimes it even can lead to joint group meetings.

8) Lisa asked about how to do fundraisers. When you are first starting out as a new local group you should probably focus your efforts on getting your group established. If your goal is to help the local patients, help them learn, understand, and cope with CRPS/chronic pain better then please focus on getting your group built up with a nice solid base first. The patients always come first.

There are others around the country who are doing fundraising, others who can help fill in those gaps but maybe no one else is going to be helping in your community with the CRPS/pain patients unless you do it. Fundraising can come later 😉