Solving the mystery of fibromyalgia

[Guest guest]

SOLVING THE MYSTERY OF FIBROMYALGIA

BY JOANNA GRAY, SOUTHERN HEALTH CONTRIBUTOR

You go to the doctor complaining of throbbing, burning muscle pain

throughout your body, overwhelming fatigue, and anxiety that makes it

extremely difficult to do even the everyday things like

housecleaning, playing with the kids and exercising.

Because you haven't been sleeping well and the pain is usually worse

in the morning, you've been calling in sick to work more often, too,

and your boss is starting to ask questions. But when the blood tests

and x-rays come back, everything is " normal. "

You leave the doctor's office frustrated, exhausted and still in

pain. There's nothing wrong with you, so your boss expects you on the

job every day, and at home your spouse has more than once told you

lately to " snap out of it " when you feel so tired, achy and anxious

" for no reason. "

The frustration of being misunderstood adds to the stress, which

leads to more anxiety, pain and fatigue. Your body is betraying you,

your life is falling apart, and no one can tell you why.

Diagnosing a chronic syndrome

This is the experience of more than six million Americans, the

majority of them women, who suffer from fibromyalgia.

Although it appears to be a mysterious disease, fibromyalgia is

actually a chronic syndrome commonly characterized by fatigue and

pain and stiffness throughout the connective tissues, especially at

as many as 15 specific pressure points, which include the back of the

head, upper back and neck, upper chest, elbows, hips and knees.

Other signs or symptoms may include having trouble sleeping, anxiety,

depression, headaches and facial pain, numbness or tingling

sensations in the hands or feet, irritable bowel syndrome and

dizziness. Because these are also symptoms of various organic

diseases, physicians must rule out any other causes before making a

diagnosis of fibromyalgia.

" If there are no other contributing factors, such as an autoimmune

disease like lupus or any other organic cause, we pursue a

multidisciplinary treatment plan for fibromyalgia that may include

water therapy, aerobic exercise and cognito-behavioral therapy, " said

Dr. Iqbal Akter, Arthritis Clinic Limited, Mount Vernon.

" But there is no single treatment that fits everybody, and the

patient also has to be proactive in doing the exercises and making

the lifestyle modifications. "

There is no magic pill for fibromyalgia either. Non-steroidal anti-

inflammatory drugs, such as aspirin or Ibuprofen, have no effect

since the pain is not caused by inflammation. Nor are there

prescription drugs, although ongoing research at the Arthritis

Foundation, the University of Michigan, and the VA Medical Center in

Durham, NC are exploring possible new remedies and treatments.

However, tricyclic antidepressants, such as Elavil, may be prescribed

to relieve the sleep disturbances that often accompany the syndrome.

And because fibromyalgia is a syndrome and not a disease, there are

no specific causes or ways to prevent it, although some researchers

suspect that low levels of seratonin, the body's " mood " hormone, may

play a role in affecting the body's response to stress.

Others point to triggering events, such as a blow or trauma to the

body, an infection, or underlying disorders such as rheumatoid

arthritis, lupus, or hypothyroidism, that don't necessarily cause

fibromyalgia, but may set the stage for its onset.

Often, just finding a physician who is knowledgeable about

fibromyalgia and understanding of the pain is a welcome relief that

gets patients started on the road to understanding and managing their

condition and ultimately feeling better.

" Every patient with fibromyalgia is different, " said Dr. Amjad

Roumany, a rheumatologist in practice at Cape Girardeau Physicians

Associates. " You can't generalize with this syndrome. After the

diagnosis is established, I take a full social history and try to

understand the whole patient and what he or she is experiencing.

" Fibromyalgia is a pain syndrome, so first we must understand that

they do have pain and then try to relieve it, " Roumany said. " Then we

take a multidisciplinary approach that may include water exercises

and medication to help improve the quality of sleep. I avoid using

the word cure, because it's not a disease, but the syndrome can be

improved. "

Living well with fibromyalgia

The good news is that fibromyalgia is not life-threatening and that

there are proven ways to help sufferers manage the condition, relieve

the pain and fatigue and return to the activities they love to do,

but in moderation.

Physicians sometimes refer fibromyalgia patients to Rehab Unlimited,

an outpatient facility affiliated with Southern Illinois Healthcare

Memorial Hospital of Carbondale and Herrin Hospital.

There, professionals like physical therapist assistant Sara Goss

provide them with the education, exercises and emotional support to

help them make a long-term commitment to managing their condition.

In addition to strengthening, stretching, and endurance activity,

Goss also teaches relaxation techniques, such as deep breathing and

visual imagery, as well as sleeping positions and diet tips to foster

a better quality of sleep.

Exercise in a pool of warm 94-degree water, perhaps combined with

heat massage, is the usual starting point for fibromyalgia patients

who arrive in great pain. The goal goes beyond getting patients over

the hump of pain by exercise and massage, however, to teach them a

combination of techniques to help them manage their condition for the

long term.

" We also discuss managing strategies for fatigue, " Goss said. " People

with fibromyalgia have to pace their activities. If they used to

clean the whole house in one day, we teach them to clean one room or

a part of a room in one day instead. They can gradually progress to

doing more, but they have to realize that moderation is the way to

manage their condition. "

Feeling that someone really understands their pain and frustration is

perhaps the best medicine for persons with fibromyalgia.

" Therapy gives them not only physical help, but also emotional, " Goss

said. " We have to incorporate the whole person for the best results.

But they have to be willing to help themselves. Those who take

ownership of their condition and follow our suggestions for the long-

term are the ones who get the best results. "

Finding support

Information and support for persons with fibromyalgia is also

available through the local chapter of the Arthritis Foundation,

which conducts research on fibromyalgia since it is a connective

tissue condition in the arthritis family. Although there is currently

no fibromyalgia support group in southern Illinois, the past groups

have been what Arthritis Foundation regional director a Reeves

calls a " share and care " group that offers both emotional support and

education on treatments such as therapeutic massage and physical

therapy. Family members can also benefit from the groups as they

learn more about the syndrome and how it affects their loved one with

fibromyalgia.

" Having the support of your family is key when living with

fibromyalgia, " Reeves said. " The syndrome is not outward; you don't

see it. The person looks healthy. A lot of times family members think

they can just pull themselves up by the bootstraps and get on with

life because they see no evidence of a disease. "

Reeves said fibromyalgia sufferers fight extreme fatigue and severe

depression. She added that family members think they should just get

over it, but that's easier to say than do.

" I think that support groups are really valuable, " said Mona Kerns,

manager of the SIH Senior Advantage Program, which has offered

fibromyalgia classes taught by Reeves.

" If there is someone out there who would be interested in

facilitating a fibromyalgia support group, between the SIH Senior

Advantage and the Arthritis Foundation we'd help them get started,

just as we did with our very successful Parkinson's support group.

People with fibromyalgia need to know that there is support here for

them in Southern Illinois. "

Fibromyalgia support and information

2006 Arthritis Walk

Mona Kerns, manager of the SIH Senior Advantage, urges Southern

Illinois walkers to take a step forward to support research and

services for fibromyalgia and other arthritis-related diseases at the

Arthritis Foundation's 2006 Arthritis Walk, set to begin at 8 a.m. on

Saturday, May 6 at the University Mall in Carbondale.

" You can pre-register as a team captain or walker, or just show up on

that day to walk or make a donation, " said Kerns, who is co-

chairperson of recruitment for the event.

" Last year, we raised $35,000, " she said. " This walk benefits the

entire Southern Illinois area from I-64 all the way down to the

southern tip of the state. "

For more information, visit www.arthritis.org or call (618) 993-1777.

Local Information and Classes

a Reeves, Regional Director, Arthritis Foundation, Southern

Illinois Branch, 4501 W. DeYoung, Suite B104, n, IL 62959.

Phone: (618) 993-1777 or e-mail to: preeves@...

Mona Kerns, Manager, SIH Senior Advantage, Phone: (877) 480-4040 or e-

mail to: senioradvantage@....

On the Web: Arthritis Foundation, www.arthritis.org.

Fibromyalgia Network, http://www.fmnetnews.com.

National Fibromyalgia Association, www.fmaware.org

At the Bookstore: The Arthritis Foundation Guide to Good Living with

Fibromyalgia, The Arthritis Foundation.

Fibromyalgia: An Essential Guide for Patients and Families, by

J. Wallace and Janice Brock Wallace.

Fibromyalgia: A leading expert's guide to understanding and getting

relief from the pain that won't go away, by Don L Goldenberg.

http://www.southernillinoisan.com/articles/2006/03/16/health/

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