Fibromyalgia not only affects the body–it also affects the mind. Many people with this condition also suffer from mental health challenges like depression and anxiety. Because of this, it’s so important to find fibromyalgia support groups online or in-person for help. Here’s how.
How to find in-person fibromyalgia support groups
The greatest method of support is often fibromyalgia support groups that meet in person. A support group can be a big help to anyone who is living with a health condition or going through a difficult time. By attending a local fibromyalgia support group, you can learn tips and tricks, make friends, and finally feel like you’re not the only one going through this. With a local community, you can help each during rough days, cheer each other’s victories, and grow together while battling this chronic pain syndrome.
To find the best fibromyalgia support groups near you:
- Talk to your doctor or another trusted healthcare professional and ask for recommendations
- Ask other fibromyalgia patients you know to find local groups
- Find a group in your area on the National Fibromyalgia & Chronic Pain Association website
- Use a website like meetup.com to find local fibromyalgia support groups
- Type fibromyalgia support groups + “your city name” in Google to find more results
Each community is different, which is why we also give advice for finding support online or creating your own group. If you live in a smaller community or you can’t find a local support group, don’t worry. There’s still some great fibromyalgia support groups you can be a part of.
Where to go for digital fibromyalgia support groups
The Internet is a powerful tool, with online help connecting fibromyalgia patients to one another and offering wonderful resources of information, inspiration, and tips for daily living. About five million people in the U.S. have fibromyalgia, and as more people become aware of the condition, an increasing array of online resources becomes available. Here’s a collection of blogs, apps, websites, and social media accounts specially targeted for people with fibromyalgia. Many of these accounts also offer their own fibromyalgia support groups, either on Facebook or in the comments of their blogs.
My Foggy Brain is a blog written by a woman experiencing fibromyalgia, depression, and attention deficit disorder. On this blog, you’ll find links to other online resources, personal tales about life with chronic pain, and inspirational stories about the author’s efforts to maintain a positive outlook on life. My Foggy Brain has won several awards and been named a top online resource for fibromyalgia by Healthline.
On the blog Counting My Spoons, Alabama-based blogger and student Julie Ryan catalogues her journey to healing while inspiring other fibromyalgia warriors to be their own health advocates. Ryan promotes striving for health through nutrition, healthy sleep, and other supportive activities. The title Counting My Spoons is a play on the popular fibromyalgia spoon theory that equates spoons to energy levels. Each day begins with so many spoons, and people with fibromyalgia must ration those spoons to ensure they have enough to make it through the day.
Find even more fibromyalgia blogs on the annual blog awards hosted by Healthline.
Online support groups and forums
Forums provide a safe place to connect and receive online help from others living with fibromyalgia and learning to live with the symptoms.
Pain Doctor’s chronic online support group allows people to start discussions for the entire community to participate in. Members also have the option of sending other members direct messages. This provides an avenue for people wanting to share personal details or ask others questions outside the eyes of the entire group.
Forums and other online groups are a wonderful way to connect with other warriors and have conversations about all aspects of living with fibromyalgia.
A plethora of websites offers online help for people with fibromyalgia. An official source and guide to all things fibromyalgia is the National Fibromyalgia Association. This organization’s official website features founder Lynne’s blog along with an abundance of information about fibromyalgia that ranges from symptoms and research updates to treatments and tips for living well despite chronic pain.
The Fibromyalgia Network offers educational articles, updates on research, and tips for coping with pain and other symptoms, such as difficulty sleeping. The network also runs a Facebook group for those wishing to connect and support one another.
The National Fibromyalgia and Chronic Pain Association is another group offering online help and resources for people living with the condition. The organization publishes a magazine and monthly newsletter, provides awareness materials for publicity events such as Fibromyalgia Awareness Day, and offers a rich resources section with links to organizations offering guidance for health insurance issues, work and disability insurance, finances, and more.
While these aren’t fibromyalgia support groups exactly, fibromyalgia apps can help you get a focus on your symptoms. Use them to learn your triggers to share with your doc or share with your support group.
My Pain Diary, available on iOS and Android platforms, helps people with fibromyalgia track their pain levels. Entries can be categorized under fibromyalgia, headache, anxiety, or undiagnosed. As you make entries, the app helps patients understand their pain and possibly identify triggers, such as stress. Each entry is automatically tagged with the day’s weather conditions, and a color-coded calendar feature allows people with fibromyalgia to take a long view and analyze symptoms by severity, type, and influences like weather to uncover trends.
Another app available is FibroCite, which provides tools for tracking symptoms and comparing them to other patients across the nation. The app also provides access to information about the latest fibromyalgia research, including newly uncovered treatments. The free app is available for both iOS and Android.
More online help for fibromyalgia comes in the form of an app called FibroMapp, which is available on Kindle in addition to iOS and Android platforms. FibroMapp includes features such as a medication tracker and alarm to signal when it’s time to take medications. A pain diary section includes space to track the severity of pain and any impacts a flare-up had on your mobility and daily life.
Social media connects people like never before. Platforms like Instagram, Facebook, Twitter, and Facebook allow people to share stories, pictures of their lives, inspirational quotes, and the little things that get them through the day.
One of the more popular posters with fibromyalgia is @beachyogagirl, a woman named Kerri Verna who lives in Florida and found relief from chronic pain through exercise and healthy living. @beachyogagirl has nearly 600,000 followers and is one of the largest accounts of its kind, however many other people with fibromyalgia also share their lives on social media.
Find posters using such hashtags as #fibromyalgia, #chronicpain, or #spoonie to connect on any site.
Pinterest also offers online help for those looking for inspiration or understanding to make life with fibromyalgia a little easier. The board Understanding Fibromyalgia is a popular one, run by Karen Crooks. The board features inspirational quotes and tips such as a recipe for an essential oil mix called Fibromyalgia Buster.
Need an in-person fibromyalgia support group? Start your own!
If you can’t find a local support group and don’t like going online, you’re not out of luck. Starting fibromyalgia support groups yourself is simpler than you think.
Decide what the focus of your group will be
This will determine who comes to your fibromyalgia support group. Do you want to invite anyone with a chronic pain condition? Only people with fibromyalgia? People with fibromyalgia or chronic fatigue syndrome? Can family and friends come along?
Consider who you want to come and what will make them comfortable. For instance, if your group is focusing solely on fibromyalgia, will your attendees be comfortable discussing the relationship challenges of fibromyalgia if their spouses are there, too?
Your targeted group of attendees must be large enough to keep the support group running, since a meeting with just three people will likely dissolve fairly quickly. At the same time, a support group that’s too big to sustain can bring an end to the meetings, too; the benefits of a small, local support group will go out the window if you’ve got an entire church-full of attendees.
Where you live will play into this step. If you’re in a big city, keep the focus fairly narrow. If you’re in a very small rural town, consider widening your pool of attendees.
Elect a leader (or leaders)
The person in charge needs to be good at organization and planning. He or she must also be good at taking charge during meetings to make sure they stay on track, as well as friendly and sociable enough to be approachable. If this doesn’t describe you, look for a friend to act as your co-leader.
You might also consider trying to get one or more experts involved. This might be as simple as asking a rheumatologist to come to a single meeting for a Q&A session, or perhaps you’re good friends with a nurse practitioner who’s willing to spend ten minutes per meeting giving health tips. Just be consistent and honest. Don’t advertise that you’ll have a rheumatologist at your fibromyalgia support group every single week if that’s not true.
Choose a location
Your projected attendance will impact this. Keep in mind that your fibromyalgia support group may grow over time. If your first meeting is a half dozen people, don’t immediately assume that your living room will work as the permanent meeting space.
A few places to look into to host fibromyalgia support groups include:
- Community centers
Any place that’s large enough to host your support group is a possibility. Of course, free places are preferred. Make sure you go through the proper channels and get all the right permission forms in advance.
Also, keep in mind what you’ll be doing at your fibromyalgia support group meetings. Will you be watching informational movies? If so, make sure your chosen location has a TV and DVD player available. If you plan to serve refreshments, make sure you’re allowed to bring food and drinks on the premises.
Put the word out
One easy way to do this is to design a poster for your support group. Include the group’s name, a brief description, meeting times and places, and contact information. Consider setting up a separate email for your support group, by the way – you don’t need to be publicizing your private contact info.
Once you’ve got your poster ready, ask permission to post it in physicians’ offices, hospital bulletin boards, community center and library events boards, and anywhere else you can think of.
Contact local newspapers, TV stations, or radio stations, and ask if they can put your support group’s information out. If there’s a similar support group nearby, ask if they’d be willing to refer people to your group. Offer to do the same once your own support group grows enough, but don’t be pushy.
If you’re part of any online support groups, post information about your local support group. Use social media to promote your group, too. Once your group is up and running, having an active online element can encourage a lot of group unity. It can also help group members feel involved on days when they’re not able to leave the house.
Have a set meeting schedule
It’s all about consistency. Meet every single Thursday, or meet every other Monday. Whatever day or schedule you set for your meeting times, stick to it. Very information-heavy support groups, such as groups that have a different expert giving a lecture each meeting, can meet every other week or even once a month. If your group is more focused on social connections and support, meet a little more often. Be wary of meeting more than once per week, though. It can quickly get overwhelming, both for the leaders and the attendees.
Also keep consistent during meetings. An article at HealthCentral.com suggests the following meeting schedule:
- Welcome and announcements: 15 minutes
- Program and speaker: 45 minutes
- Questions and discussion: 30 minutes
Consider your own preferences. You likely don’t enjoy meetings that drag on and on, so keep it fairly short. Offer some refreshments afterwards, so that attendees have a chance to interact. If you’re not able to pay for the refreshments yourself on a regular basis, you can ask for volunteers to take turns bringing in refreshments. Alternately, put a jar out labeled “refreshment fund” and ask everyone to give a little bit, if they’re able.
If you’ve got any lingering questions about starting your own support group, go to this checklist. It’s specifically for starting an obsessive-compulsives support group, but it can still work well for fibromyalgia support groups (or whatever other type of support group you want to start).
The best fibromyalgia support groups are those that work for you. We give options here for in-person and online support because you’ll likely need a combination of both to find the support you need. Online groups can be invaluable on days that you’re in too much pain to leave the house. They also provide 24-7 support, with users often around the globe. In-person fibromyalgia support groups, however, can provide that community support and touch you need.
If you haven’t found fibromyalgia support groups in your area, or need more help, it may be time to talk to a pain specialist. They can help connect you with resources in your community, and help you find treatments for your symptoms. Find a pain doctor in your area by clicking the button below.