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Coping with fibromyalgia in yourself or a loved one

May 2009

By Jennifer Wagner
Pain Management coordinator

In honor of National Fibromyalgia Awareness Day (May 12) I wanted to bring attention to this common chronic pain condition. Fibromyalgia affects more than 6 million people in this country. Most of them are women, but it does occur in men as well.

People with fibromyalgia may experience the following symptoms:

• chronic, widespread pain all over the body;
• tenderness, soreness and flu-like aches;
• fatigue; problems sleeping;
• headaches;
• morning stiffness;
• memory and concentration difficulties;
• difficulty performing daily functions.

There are a number of ways you can help control your pain and live better. Not all methods may work for you. Using more than one approach may work best. It is important to:

• Exercise and stay active;
• Get a full eight hours of sleep each night;
• Eat a balanced diet and drink plenty of fluids;
• Decrease stress;
• Use complementary medicine such as massage, tai chi, acupuncture and chiropractic treatments.

No one can feel your pain. Only you can know it completely. It is crucial that you speak up. Tell your story and ask questions when you visit your health care provider.

Your health care provider needs to listen closely to your concerns. Be prepared so you can make the most of your meeting with your health care provider — you will likely have limited time. Write down your thoughts before you go. Give special attention to describing:

• Pain: The more you share about the pain you are experiencing, the better. Sometimes it's hard to find the right words to say exactly how you hurt. Below are a few ways to describe the pain of fibromyalgia. Be sure to describe WHERE you feel pain.
  • Tender
  • Stiff
  • Dull
  • Deep pain
  • Achy
  • Bruised
  • Flu-like symptoms
• Impact on life: Pain often affects the way you live every day. Talk with your health care provider about how you spend each day. Does the pain keep you from doing any of the things you usually do? Be detailed. It may help to write this information down.
• Typical daily activities: Talk to your health care provider about tasks you can or cannot do.

Friends and family members are vital to people with fibromyalgia. They serve as a support system. It is important that they learn about the condition. No two people experience fibromyalgia in the same way. No two people require the same kind of support. But there are tips that may help you understand and help your loved one:

Take the time to understand
People with fibromyalgia may not be able to say how the condition is affecting them. Some hurt all over. Others say it is like having the flu that never goes away. People may feel fine one day and very bad the next day. You will never know if you don't ask. Just because you cannot see their pain — especially if they are stoic — does not mean the pain is not there.

Don't do it all
You may want to take care of everything for your loved one with fibromyalgia. But this can make some people feel helpless. Others may take excessive advantage of your helpfulness. Help when needed. Work to build independence. Check in with your loved one often. While your help may be needed, you may also need to give him or her some space. If your loved one does desire more independence, don't feel bad. Remember, the goal is for him or her to work through the pain and feel better.

Be an advocate
Attend health care providers' appointments. Help your loved one organize his or her thoughts before the visit, and go along on office visits. You are a part of what your loved one is going through. This means your presence can help back up the information he or she shares. Don't be afraid to speak up — ask questions and make sure the health care provider and your loved one are being clear with one another.

Get educated
Read up on fibromyalgia. More and more groups are focusing on fibromyalgia. They have resources on their Web sites. You can go there to get helpful information. Visit the Web sites below or call the organizations to get more details.

American Chronic Pain Association: www.theacpa.org, 1-800-533-3231
American Pain Foundation: www.painfoundation.org, 1-888-615-PAIN (7246)
National Pain Foundation: www.nationalpainfoundation.org, 1-866-590-PAIN (7246)

Finally, I want to encourage people to sign an online petition demanding improved access to pain care for all Americans.

In recent online surveys conducted among people with fibromyalgia by the American Pain Foundation (APF) and the National Fibromyalgia Association (NFA), 48 percent of respondents had difficulty with their insurance companies covering their pain treatment. Of those, the main problems people had with their insurance companies included: incomplete coverage for pain treatment options (19 percent); affordability of co-payments (15 percent); affordability of premiums (12 percent); delays in pre-authorization process (11 percent); and delays in FDA-approved medications (11 percent). To sign the petition, visit:
 
www.painfoundation.org/page.asp?file=ManageYourPain/Fibromyalgia/FibroPetition.htm

~Jennifer