How Do You Find Fibromyalgia Support Groups?
The Centers for Disease Control reports that fibromyalgia affects about four million US adults – roughly 2% of the population.
Although fibromyalgia affects the musculature of the body, it can also have a profound effect on other parts of the body – for example, women with fibromyalgia have 40% less physical function and 67% less mental health than women without fibromyalgia. In general, adults with fibromyalgia have higher rates of depression – there are three times more likely to be depressed than their counterparts without fibromyalgia.
This is where support groups come in handy; according to WebMD, support groups are different from formal therapy in that they are typically led by a layperson but are a great coping tool when used in addition to formal treatment.
Benefits of Fibromyalgia Support Groups
The benefits of support groups can be astronomical – but they are also subjective to the individual.
One of the biggest benefits for an individual in a support group is helping the person know that they are not alone; for anyone with a chronic condition, it can feel isolating. The benefit of the support group is that most people in the group have the same (or similar) chronic condition.
In addition, new skills can be learned from the group. For example, if you have fibromyalgia and have never met anyone else with fibromyalgia, you can learn how to relate to others. Also, since you’ll be meeting with other people, the chances are high that they’ll be experiencing similar issues (or have experienced the same issues) and can give you advice on how to cope.
Locating a Fibromyalgia Support Group
When trying to find fibromyalgia support groups, there are a variety of places to search.
First, ask yourself what type of group you are looking for. There are online groups and local groups. Once you’ve narrowed that down, it is time to begin your search.
For local groups, start here:
- Ask your local physician’s office. Your physician may have a listing of local fibromyalgia support groups. The nurse may know as well. If your physician has a case manager or social worker, ask to be put in touch with this person, as he or she will be an excellent resource.
- Contact local centers. The library, community centers, churches, mosques, synagogues, and temples are often great resources for support groups.
- If you know any people with fibromyalgia. Ask if they know of any local support groups.
- Contact organizations. Contact your state or national organizations that are devoted to fibromyalgia; they may have a listing of local fibromyalgia support groups.
For internet support groups, start here:
- Search Facebook. As Facebook is evolving, so is Facebook support groups. You can search in the toolbar at the top of the page for fibromyalgia support groups.
- Search Google, or any search engine. You can search for “online fibromyalgia support groups” or something similar. You can also search online for local support groups.
- Living with Fibro is an online fibromyalgia support group. Ben Munoz created this website and support group in 2009. Per the website, thousands of people living with fibro visit each month. They have a variety of different topics, from “fibro 101”, to “symptoms,” to “complementary therapies,” to “information to share with loved ones.” If you’re seeking an online “home,” this support group may have exactly what you’re looking for!
- National Fibromyalgia & Chronic Pain Association has a listing of support groups, alphabetized by state. You just click on your state, then scroll through the listings to see if your city has a support group listed. It also has resources and an active online community.
- PainDoctor also has a great article posted on a lot of different resources. There are a variety of different fibromyalgia blogs which also have online communities. The page also has various apps listed which are useful to people with fibro, as well as a variety of different social media figures who have fibro.
Create Your Own Fibromyalgia Support Group
There is, of course, the possibility that you may not find a support group that doesn’t fit your needs. Or there isn’t a support group in your area.
So what can you do?
Here are some tips for creating your support group, courtesy of Anxiety & Depression Association of America:
- Consider your group members. You want to make your support group broad enough that you will attract members. A very specific group may not garner group participation. However, keep in mind that you can’t help everyone. You must also consider whether you will include friends and family, or whether the group will include only people with fibro.
- You must have a leader or leaders. Will the leader be you, or will you have to find a leader? The leader is also someone who is responsible for setting up the meeting and cleaning up after the completion of the meeting, as well as arranging for speakers at the meetings – so keep in mind that the leader should be responsible. The leader should also be someone who can act quickly in a crisis – for example, if someone in the group is depressed and voices that they have suicidal ideations, they should know what to do.
- You should select the location of your support group based on the goals of the group. If the group is informational, choosing a place such as a church, library, or a college is a good choice. Having the meeting in your home is a fine choice if the goal is a “laidback” type of group, but you also should know the goal amount of people and if the size of space is adequate.
- You may need materials for your meeting – especially if your group is an informational group. Flyers are important, especially when your group is just beginning.
Tips for Running a Successful Fibromyalgia Support Group
While running the meetings, keep these points in mind:
- You must leave time for discussion. You may have a speaker who will be talking about a specific topic, but the people taking part in the group will want to discuss the topic with each other, as well as the speaker. If you don’t have a speaker at your meeting, choosing a topic beforehand is a good idea, but know that sometimes the topics can veer off-track and this is ok.
- Setting goals for the group are important. Per the Anxiety & Depression Association of American, “Members should also choose a specific goal to work on that can be accomplished by the next meeting. Each person’s success helps the whole group. Those having difficulty may view the success of others as inspiration.”
- Finally, leave time at the end of the meeting for informal socializing! Perhaps have refreshments available.