Lyme & Fibromyalgia Online Support Group

What Is Fibromyalgia?

Fast Facts: An Easy-to-Read Series of Publications for the Public

Fibromyalgia is a disorder that causes muscle pain and fatigue (feeling tired). People with fibromyalgia have “tender points” on the body. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs. These points hurt when pressure is put on them.

People with fibromyalgia may also have other symptoms, such as:

Trouble sleeping

Morning stiffness

Headaches

Painful menstrual periods

Tingling or numbness in hands and feet

Problems with thinking and memory (sometimes called “fibro fog”).

A person may have two or more coexisting chronic pain conditions. Such conditions can include chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, temporomandibular joint dysfunction, and vulvodynia. It is not known whether these disorders share a common cause.

What Causes Fibromyalgia?

Who Is Affected by Fibromyalgia?

How Is Fibromyalgia Treated?

What Can I Do to Try to Feel Better?

What Research Is Being Done on Fibromyalgia?

What Causes Fibromyalgia?

The causes of fibromyalgia are unknown. There may be a number of factors involved. Fibromyalgia has been linked to:

Stressful or traumatic events, such as car accidents

Repetitive injuries

Illness

Certain diseases.

Fibromyalgia can also occur on its own.

Some scientists think that a gene or genes might be involved in fibromyalgia. The genes could make a person react strongly to things that other people would not find painful.

Who Is Affected by Fibromyalgia?

Scientists estimate that fibromyalgia affects 5 million Americans 18 or older. Between 80 and 90 percent of people diagnosed with fibromyalgia are women. However, men and children also can have the disorder. Most people are diagnosed during middle age.

People with certain other diseases may be more likely to have fibromyalgia. These diseases include:

Rheumatoid arthritis

Systemic lupus erythematosus (commonly called lupus)

Ankylosing spondylitis (spinal arthritis).

Women who have a family member with fibromyalgia may be more likely to have fibromyalgia themselves.

How Is Fibromyalgia Treated?

Fibromyalgia can be hard to treat. It's important to find a doctor who is familiar with the disorder and its treatment. Many family physicians, general internists, or rheumatologists can treat fibromyalgia. Rheumatologists are doctors who specialize in arthritis and other conditions that affect the joints or soft tissues.

Fibromyalgia treatment often requires a team approach. The team may include your doctor, a physical therapist, and possibly other health care providers. A pain or rheumatology clinic can be a good place to get treatment.

What Can I Do to Try to Feel Better?

There are many things you can do to feel better, including:

Taking medicines as prescribed

Getting enough sleep

Exercising

Eating well

Making work changes if necessary.

What Research Is Being Done on Fibromyalgia?

The NIAMS sponsors research to help understand fibromyalgia and find better ways to diagnose, treat, and prevent it. Researchers are studying:

Why people with fibromyalgia have increased sensitivity to pain.

Medicines and behavioral treatments.

Whether there is a gene or genes that make a person more likely to have fibromyalgia.

The use of imaging methods, such as magnetic resonate imaging (MRI), to better understand fibromyalgia.

Inflammation in the body and its relationship to fibromyalgia.

Nondrug therapies to help reduce pain.

Methods to improve sleep in people with fibromyalgia.

from NIAMS...

1 - Fibromyalgia is primarily characterized by widespread muscle pain and tenderness.

Fibromyalgia does not cause inflammation or damage to the joints, muscles, or other tissues. Therefore, it is not a disease of the joints but is arthritis-related. In 1990, the American College of Rheumatology established criteria to diagnose fibromyalgia:

A history of widespread pain in all four quadrants of the body (e.g. above the waist on both sides; below the waist on both sides of the body) for three months or more.

Pain at 11 of 18 tender point sites

How to Recognize Signs and Symptoms of Fibromyalgia

2 - Fibromyalgia can occur as a primary or secondary condition.

Fibromyalgia can occur as a primary syndrome characterized by muscular pain or as a secondary syndrome to other rheumatic diseases. It is possible to have fibromyalgia syndrome as well as another rheumatic disease.

Patients with rheumatoid arthritis, systemic lupus erythematosus, or ankylosing spondylitis are at increased risk of also developing fibromyalgia syndrome. Those patients may wonder if they have symptoms which are common to two conditions (i.e. overlapping symptoms) or if they actually have two distinct conditions.

Test Your Knowledge: Fibromyalgia

Fibromyalgia vs. Rheumatoid Arthritis Pain: What Factors Determine Treatment?

3 - Fibromyalgia is often misunderstood and symptoms are often unrecognized, causing the syndrome to remain undiagnosed for months or years.

Fibromyalgia symptoms are often confused with symptoms typically linked to another condition. Fibromyalgia symptoms can mimic or overlap symptoms associated with other rheumatic diseases. According to the National Fibromyalgia Association, it takes about five years on average to get an accurate diagnosis of fibromyalgia.

Fibromyalgia Screening Quiz

4 - Ninety percent of fibromyalgia patients suffer with severe fatigue or a sleep disorder.

Fatigue and sleep problems are a major characteristic associated with fibromyalgia. Therefore, problems which develop because of poor sleep, also referred to as non-restorative sleep, are problematic as well (i.e. cognitive problems, memory lapses, lack of energy).

What is Chronic Fatigue?

I'm Tired of Being Tired

5 - Fibromyalgia is associated with additional symptoms which seem distinct themselves but are actually included in fibromyalgia syndrome.

Other than muscular pain, fatigue, and tenderness, fibromyalgia patients also may experience:

headaches

irritable bladder or bowel

memory problems

temporomandibular joint disorder

pelvic pain

noise sensitivity

temperature sensitivity

restless leg syndrome

depression

anxiety

6 - There are psychological as well as physical aspects associated with fibromyalgia.

In a study of 307 patients evaluated over an 11-year period (reported at an American College of Rheumatology meeting by Yunus and colleagues), one-third of patients had severe physical as well as severe psychological issues. One-third had mild psychological and moderate physical issues. Another third had moderate pyschological symptoms with mild physical symptoms.

7 - Since there is so much variability in fibromyalgia, the syndrome does not manifest itself identically in all patients.

Since not all fibromyalgia patients experience the same symptoms, there may be sub-types of fibromyalgia which may be discovered later and would influence treatment choices. Until the cause of fibromyalgia is determined, the variability of symptoms will remain part of the puzzle.

Fibromyalgia - Researching the Cause

8 - Diagnosis of fibromyalgia focuses on tender points but there is no definitive diagnostic test for fibromyalgia such as a blood test or X-ray.

Diagnosis of fibromyalgia is solely based on symptoms which are presented and on a physical examination. If diagnostic tests are ordered, it is to rule out other conditions or find out more about other symptoms.

How is Fibromyalgia Diagnosed?

9 - Medication and non-medication treatments are used to manage fibromyalgia.

Medications are used to treat pain, improve sleep, and manage depression and anxiety. Your physician will determine what to prescribe based on symptoms presented. Alternative treatments which focus on pain relief and stress relief also benefit many fibromyalgia patients.

How is Fibromyalgia Treated?

Fibromyalgia Medication Options

10 - Fibromyalgia affects more women than men. The prevalence of fibromyalgia is between 2 and 4 percent of the population.

Though the statistics reveal the prevalence of fibromyalgia, statistics do not reveal how many people live well with fibromyalgia and have successfully managed the syndrome to the degree of maintaining good quality of life. It's important to get a proper diagnosis and to follow a treatment regiment which affords you a good quality of life despite your diagnosis.

Seldom is fibromyalgia a solitary illness. Most FM patients have one or more comorbid (related) conditions. Which came first is one of those chicken and egg questions.

Why do people with FM usually have so many other disorders? The answer to that may be found in a new paradigm proposed several years ago by Dr. Muhammad Yunus. He suggests that many of these related illnesses could be classified as Central Sensitivity Syndromes. Basically, this means that the central nervous system becomes hypersensitive, which stresses the rest of the body and can eventually lead to any number of different disorders. (See "Are Fibromyalgia and Other Chronic Conditions Associated?" for more information on Central Sensitivity Syndrome.)

Some of the related conditions that fibromyalgia patients may have include:

Allergies

Migraine disease

Restless legs syndrome

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

Irritable bowel syndrome

Lupus

Multiple sclerosis

Hypothyroidism

Temporomandibular joint disorder (TMJ)

Chiari malformation

Intermittent cervical cord compression

Cervical stenosis

Polymyalgia rheumatica

Sleep apnea

Raynaud's syndrome

Sjogren's disease

Myofascial pain syndrome

Depression

Osteoporosis

Multiple chemical sensitivity

Osteoarthritis

Rheumatoid arthritis

Interstitial Cystitis

Gulf War Syndrome

Dinerman H, Steere AC.

Source

Tufts University School of Medicine, Boston, Massachusetts.

Abstract

OBJECTIVE:

To describe the clinical and laboratory findings as well as results of treatment in patients with Lyme disease associated with fibromyalgia.

DESIGN:

Observational cohort study. The mean duration of observation was 2.5 years (range, 1 to 4 years).

SETTING:

Diagnostic Lyme disease clinic in a university hospital.

PATIENTS:

Of 287 patients seen with Lyme disease during a 3.5-year period, 22 (8%) had fibromyalgia associated with this illness, and 15 (5%) participated in the observational study.

MEASUREMENTS:

Symptoms and signs of fibromyalgia, immunodiagnostic tests for Lyme disease, and tests of neurologic function.

RESULTS:

Of the 15 patients, 9 developed widespread musculoskeletal pain, tender points, dysesthesias, memory difficulties, and debilitating fatigue a mean duration of 1.7 months after early Lyme disease; the remaining six patients developed those symptoms during the course of Lyme arthritis. At the time of our evaluation, late in the course of their illness, 11 patients had positive immunoglobulin (Ig) G antibody responses to Borrelia burgdorferi by enzyme-linked immunosorbent assay (ELISA), one had a positive Western blot, and the three seronegative patients had positive cellular immune responses to borrelial antigens. Four patients had abnormal cerebrospinal fluid analyses that showed an elevated protein level, a slight pleocytosis, or intrathecal antibody production to the spirochete. The signs of Lyme disease resolved with antibiotic therapy, usually intravenous ceftriaxone, 2 g/d for 2 to 4 weeks, except in one patient with persistent knee swelling. However, 14 of the 15 patients continued to have symptoms of fibromyalgia. Currently, only one patient is completely asymptomatic.

CONCLUSIONS:

Lyme disease may trigger fibromyalgia, but antibiotics do not seem to be effective in the treatment of the fibromyalgia.