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3 Steps to Creating Your Own Personal Fibromyalgia Support System

  [ 16 votes ]   [ 1 Comment ]
By Sue Ingebretson • • November 9, 2013

3 Steps to Creating Your Own Personal Fibromyalgia Support System

More than a decade ago, as I sought solutions for my fibromyalgia concerns, I commonly heard, “Fibro-WHAT?” No one had a clue. Not doctors, administrative staff, friends, family, neighbors, co-workers, nor insurance company employees.

I felt as if I spoke a different language.

Things have changed. Fibromyalgia may still be misspelled quite a bit (as well as mispronounced), but at least it’s more commonly known. Fibromyalgia is featured in the news, on late night TV, and in print ads in most women’s magazines. More people, in general, are familiar with fibromyalgia. Furthermore, if they’re not diagnosed with it themselves, they more than likely know someone who is.

The world of fibromyalgia is ever-expanding. There are support groups, websites, blogs, online programs, and countless social media sites all devoted to the cause of expanding fibromyalgia awareness.

And, yet …

It’s still so easy to feel alone.

Living with chronic illness is by definition very isolating. Chronic illness is ongoing. It has the potential to keep you from doing what you want to do. When compared to the fully-functioning populace, we may feel compromised by pain, fatigue, frustration, as well as finances. This “set apart” experience leaves us to feel cut-off from the rest of the world.

That’s why assembling a group to support YOUR specific needs
is fundamentally important.

To approach this is process, consider the following three steps.

1.  Ask

While this seems only logical, it takes a bit of courage and resourcefulness to implement this step. Asking for help may take us outside of our comfort zone.

But here’s a tip – we don’t have to say the exact words, “I need help.” We can instead ask for something specific. For example, if financial support is needed, we can call a disability agency and ask for fibromyalgia-specific brochures, documentation, or applications, etc. Be sure to jot down the particulars of the phone call including the date and time of the call, the name(s) of those with whom you spoke, any recommendations that they made, and the actions that were promised (if any).

If you’d like to find resources in your area, consider speaking to the organizer of a local support group. Ask for help that applies to what you need most. Ask for assistance with transportation, medical help recommendations, and/or anything else that comes to mind. Additionally, once you procure a source of support, you’re likely to find that their information extends beyond your initial topic of discussion.

2.  Send Out a Casting Call

Once you’ve gotten over the hurdle of asking for support, make a list of those who could be recruited to provide you with assistance. Creating your own team of supporters is an important step toward getting the help you need. While many feel that their doctor is the head of their healthcare team, consider a re-shuffling of roles.

YOU lead the pack and are the head of your own healthcare team.
Everyone else plays a supporting role.

Assemble your own health and wellness team by using the following list to jump-start your ideas. These are listed in no particular order of importance.

  • Social media sites

  • Local support groups

  • Your general practitioner

  • Your specializing practitioners (neurologist, rheumatologist, internist, etc.)

  • The staff at your commonly visited doctor’s office(s). (Enlisting the help of key staff members can make all the difference when it comes to speedy appointments, efficient referrals, and minimizing paperwork glitches).

  • Insurance agents and their key staff members

  • Chiropractors

  • Clergy

  • Massage therapists

  • Holistic nutritionists

  • Naturopaths

  • Health coaches and various holistic health care practitioners

  • Physical therapists

  • Friends

  • Family

  • Neighbors

  • Co-workers

  • Your fitness/workout buddies

  • Your local pharmacist

  • Personal trainers

  • Acupuncturists

  • National pain and/or fibromyalgia organizations

  • State or federal disability bureaus

  • Specialists working in your local health food stores

  • Produce managers in your local farmer’s markets and stores

  • Resources specific to your particular needs

3.  Assemble Your Cast

Now that you’ve created a list of supporting members for your team, call them up, email them, or ask them in person for referrals. Have conversations with them or at least observe their conversations (such as with social media sites) to see what they have to offer or contribute toward your needs.

Ask friends for their referrals. When people are pleased with their practitioners, they’re usually only too happy to tell you all about them. Of course, they’re happy to tell you all about them when they’re displeased, too. Either way, take note of the information you receive as referrals, but I’d also suggest that you check them out for yourself. There’s no better assessment than those that are done firsthand.

Gather the responses that you receive and note the ones that interest you. Include social media sites on your list that offer support, new information, and helpful advice or ideas. While your insurance may require you to see specific practitioners, there’s a wealth of support you can receive outside of that limited network (and yes, some of it is free).

Remember that when it comes to assembling your team of support – you are the Team Captain. You get to decide who becomes part of your team. You get to decide who doesn’t make the cut. You get to apply your own filters that determine your requirements for inclusion. The only basic criterion is whether or not the person or group provides you with some support.

You see, the great part about assembling a team, is that the individual members are simply pieces of your “whole health puzzle.” Some provide large pieces of the solution and some may simply offer a snippet of help.

Therefore, the beauty of your group becomes apparent when all the pieces assemble perfectly together to reveal your true picture of wellness.

Image courtesy of franky242 /



Sue Ingebretson ( is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia editor for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™- a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

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Article Comments Post a Comment

Good Post
Posted by: HypoGal
Nov 10, 2013
I agree to battle Fibromyalgia you really a team. It is always interesting to read other ideas on how to manage ME.
Reply Reply
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