The Fibromyalgia Support Center

Every person is unique, but when you face a challenge like fibromyalgia, you are never alone. Countless men and women have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web to assemble links to the very best fibromyalgia resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you'll see, we always welcome your ideas and suggestions to make this fibromyalgia guide even more helpful to survivors like you.

JUST FOUND OUT

Survivors Say: Best Resources for Fibromyalgia

Survivors say these are the best resources for those who have just found out; check them out to learn more about your options:

• National Institute of Arthritis and Musculoskeletal and Skin Diseases: Questions and Answers About Fibromyalgia
• Fibromaylgia Network
• MedlinePlus: Fibromyalgia

The Big Picture

Fibromyalgia makes you feel tired and causes muscle pain and "tender points." Tender points are places on the neck, shoulders, back, hips, arms or legs that hurt when touched. People with fibromyalgia may have other symptoms, such as trouble sleeping, morning stiffness, headaches, and problems with thinking and memory, sometimes called "fibro fog."

No one knows what causes fibromyalgia. Anyone can get it, but it is most common in middle-aged women. People with rheumatoid arthritis and other autoimmune diseases are particularly likely to develop fibromyalgia. There is no cure for fibromyalgia, but medicines can help you manage your symptoms. Getting enough sleep and exercising may also help. A better understanding of your symptoms can be a big help in managing this condition:

Mayoclinic.com: Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process

Your Fibromyalgia

Getting a definitive diagnosis of fibromyalgia can be difficult and take a very long time, and misdiagnosis is not uncommon. So you may want to ask for a second (or third) medical opinion:

About.com: Adrienne Dellwo's Chronic Fatigue and Fibromyalgia Blog -- Do You Need a Second Opinion?

Questions you may want to ask your doctor when you've just been diagnosed:

Fibromyalgia-symptoms.org: Top Ten Questions to Ask Your Doctor

Your World

Getting a diagnosis of fibromyalgia can raise many emotions, among them frustration, anger, sadness, and anxiety about the future. It's important to take time to pay attention these feelings and find support to help you now:

Fibro360.com: Life After Diagnosis

Breaking the news to those closest to you that you have fibromyalgia isn't always easy, but it helps to offer them resources where they can learn more about the condition. Helping others to understand the inconsistent nature of fibromyalgia make it easier for them to appreciate the difficulties you're facing and support you on your good and bad days:

About.com: Understanding Fibromyalgia - Fibromyalgia Simplified

Fibromyalgia Myths

Since relatively little is understood about fibromyalgia, it's not surprising that there are plenty of misconceptions out there. Read this Mayoclinic.com guide to 9 common myths and get the truth about each:

• Fibromyalgia Myths: The truth about 9 common myths
• National Pain Foundation: Myths and Misconceptions

Information and Recommended Links for Survivors

Survivors say these are the best guides for dealing with fibromyalgia; check them out to learn more about your options:

• Fibromyalgia Network: Daily Living
• Health.com: Chronic Pain - Living with Fibromyalgia
• WebMD: Fibromyalgia Guide - Treatment & Care

Types of Treatment

These sites detail the most common treatments for fibromyalgia, which can include a combination of prescription drugs for relieving pain and fatigue; physical therapy; and lifestyle changes:

• WebMD: Fibromyalgia Guide - Treatment and Care
• Arthritis Foundation: Fibromyalgia - Treatment Options

Possible Treatment Side Effects

Any of the drugs you may take to relieve pain, anxiety, and/or depression, or perhaps to help you sleep better, brings with it a risk of side effects. Talk to your doctor before you start a new drug - and be sure to share any other medication you're already taking - to learn more about possible side effects and what to do if they worsen. This Neurologychannel.com site details common treatments and possible side effects:

Fibromyalgia - Treatment

Holistic Treatments

Some complementary/alternative therapies, including acupuncture, biofeedback, massage, hypnosis and magnesium supplements, may be useful in managing the symptoms of fibromyalgia:

National Center for Complementary and Alternative Medicine: CAM and Fibromyalgia - At a Glance

Healthcare Providers Who Can Help

Use this WebMD source to help you find a fibromyalgia specialist:

Finding the Right Fibromyalgia Doctor or Fibromyalgia Specialist

Or find a pain specialist through the National Pain Foundation's directory:

Pain Care Provider Directory

Dealing with Fibromyalgia: Information for Co-Survivors

How You Can Help

• Understand that as a co-survivor you're on journey, too, just like the survivor. And you too will have your ups and downs, especially with a condition like fibromyalgia, which is still poorly understood.
• Offer help, patience, and understanding when your survivor is experiencing significant amounts of pain; ask what would make her more comfortable.
• Become an advocate for fibromyalgia research and for raising awareness about the condition.

What to Say

• “I'm here to support you in your battle against fibromyalgia.”
• “I'm sorry you're struggling today; is there anything I can do to help?”
• “Have you considered looking into clinical trials for fibromyalgia treatment?”

What Not to Say

• “Fibromyalgia isn't really a disease.”
• “You look fine to me; are you sure there's something wrong with you?”
• “I don't think your doctors know what they're talking about.”

Things You Can Do for a Survivor Every Day

• Take a class in massage therapy. When your survivor feels good, therapeutic massage can offer great relief.
• Keep the lines of communication open daily; as a co-survivor, you'll be frustrated with the disease just as the survivor is -- communication is the key to understanding.
• Help with errands and chores around the house; these simple tasks can cause a lot physical stress and pain for someone with fibromyalgia.

How to Build a Support Network

• Set up your TSC co-survivor profile.
• Create a support group for your friend/family member.
• Provide updates to others on how your survivor is doing.

How to Help a Survivor Deal with Day-to-Day Challenges

• Work/School – Work/school may become frustrating and painful for a fibromyalgia survivor; offer them physical assistance when needed. WebMD: Fibromyalgia - Work and Disability
• Family – When one person in the family suffers from fibromyalgia, everyone will feel the effects. Here's help in handling the impact on the entire family, from CFIDS and Fibromyalgia Self-Help: For Family and Friends: Roadmap for Chronic Fatigue Syndrome and Fibromyalgia

Recovery /Recurrence

The emotional journey of fibromyalgia is sometimes as difficult as the physical challenges the disease presents. During the process of managing your fibromyalgia, it's important to deal with inevitable frustrations and emotions that come up, especially as the condition alternately improves and worsens over time and pain can become intense and hard to manage:

• National Fibromyalgia Association: Depression and Fibromyalgia
• National Pain Foundation: Self-Management Strategies
  

Tracking your pain, emotions, energy level, and more in a fibromyalgia diary can help you better understand what makes you feel better, as well as what may be worsening your symptoms. Finding these connections in your daily routine can make it easier to find ways to reduce the severity of your symptoms:

• About.com: Fibromyalgia and Chronic Fatigue Syndrome: Tracking Your Symptoms

 

Give Back

Have you ever considered that sharing your experience as a fibromyalgia survivor might help someone else? Take a minute to set up your TSC profile, then share your fibromyalgia experiences, including what got your through, with others. Your words might inspire someone else!

 

Fibromyalgia is not life-threatening, nor does it appear to be a progressive disease that causes damage to the body over time. But fibromyalgia is painful and can be hard to manage. If treatments are not working to keep your symptoms in check, try not to give up. Keep exploring the possibilities with your doctor and if you feel you're not getting anywhere with your physician or pain specialist, it may be time to find someone else. Talking to others who are going through what you are can not only help you emotionally and spiritually, but other fibromyalgia survivors may tell you about new treatments you haven't heard of. Check out these communities and organizations for help, inspiration, support and information:

• American Chronic Pain Association: Resources
• National Pain Association: My Community
• Dailystrength.org: Fibromyalgia Support Group