Comprehensive Treatment of Fibromyalgia--Advice from an FM Expert

by Robert Bennett M.D., FRCP

The Massachusetts CFIDS/ME & FM Association Fall 2002 UPDATE

Editor's Note, 2015: We suggest you pass this article on to your treating physicians. Much of Dr. Bennett's treatment protocol also applies to individuals with ME/CFS, as the two conditions closely parallel each other. There has been some change in the medications recommended for FM pain since this article was written in 2002. For updated information go to the Fibromyalgia Information Foundation website maintained by Dr. Bennett's research group and click on Treatment. Also see More resources below.

If you are reading this you probably have a common syndrome of chronic musculoskeletal pain called fibromyalgia (FM). This chronic pain state is caused by abnormalities of sensory processing within the spinal cord and brain. As such you will usually experience a bewildering array of bodily and psychological problems that can seldom be "cured". However, armed with both patience and knowledge, many FM patients can be helped to live with less pain and be more productive. In my own evolving experience of dealing with this problem, I can identify seven aspects of management that are of importance for your doctor to successfully manage your FM.


My advice to doctors who care for FM patients

1. Realize that FM patients are going to be a chronic challenge.

2. Be non-judgmental and prepared to be an advocate.

3. Understand the pathophysiological basis for symptoms.

4. Analyze and treat pain complaints in a systemic approach.

5. Recognize and treat psychological problems at an early stage.

6. Recognize associated syndromes of disordered sensory processing.

7. Involve all FM patients in a program of stretching and gentle aerobic exercise.


Treatment of Pain

Pain is the primary over-riding problem for most of you. Many of the problems you experience are largely a secondary consequence of having chronic pain. When pain is even partly relieved, FM patients experience a significant improvement in psychological distress, cognitive abilities, sleep and functional capacity. A total elimination of pain is currently not possible in the majority of FM patients. However, worthwhile improvements can nearly always be achieved by a careful systematic analysis of the pain complaints.

As a generalization, FM-related pain can be divided into general pain (i.e., the chronic background pain experience) and focal pain (i.e., the intensification of pain in a specific region—usually aggravated by movement). The latter is probably a potent driving force in the generation of central sensitization. Attempts to break the pain cycle, to enable patients to be more functional are especially important.

In general, most FM patients do not derive a great deal of benefit from non-steroidal anti-inflammatory drugs (NSAID) preparations or acetaminophen, although NSAIDs are very useful in the treatment of associated joint pain problems such as osteoarthritis. Prednisone and other steroids have been shown to be ineffective in the long-term treatment of FM.

General pain

The use of NSAIDs (e.g., ibuprofen, aspirin, etc.) is usually disappointing. It is unusual for FM patients to experience more than a 20% relief of their pain, but many consider this to be worthwhile.  Narcotics (propoxyphene, codeine, and oxycodone) often provide a worthwhile relief of pain. In most patients, concerns about addiction, dependency and tolerance are ill-founded. Ultram (Tramadol) and Ultracet (Tramadol + Tylenol), are the most useful pain medications in many patients. They both have the advantages of having a low abuse potential and are not a prostaglandin inhibitor. Tramadol reduces the epileptogenic threshold and it should not be used in patients with seizure disorders.

Currently, opiates are the most effective medications for managing most chronic pain states (Friedman OP 1990, Portenoy 1996). Their use is often condemned out of ignorance regarding their propensity to cause addiction, physical dependence and tolerance (Melzack 1990, Portenoy et al 1997, Wall 1997).

While physical dependence (defined as a withdrawal syndrome on abrupt discontinuation) is inevitable, this should not be equated with addiction (Portenoy 1996). Addiction is a dysfunctional state occurring as a result of the unrestrained use of a drug for its mind-altering properties. Manipulation of the medical system and the acquisition of narcotics from non-medical sources are common accompaniments. Addiction should not be confused with "pseudo-addiction". This is a drug-seeking behavior generated by attempts to obtain appropriate pain relief in the face of under-treatment of pain.

Opiates should never be the first choice for pain relief in FM, but they should not be withheld if less powerful analgesics have failed. In my experience many FM patients want to try opioid medications, but then give up on them due to unacceptable side effects, such as mental fog, increased tiredness, dizziness, constipation and itching.

Local pain

Although you are experiencing widespread body pain—a manifestation of central sensitization—you will also have multiple areas of tenderness in muscles—so called "myofascial trigger points." The severity of pain and the location of these "hot spots" typically varies from month to month, and the judicious use of myofascial trigger point injections and spray and stretch (see section on focal pain) is worthwhile in selected patients. It is often worthwhile for your physician to identify the most symptomatic points for myofascial therapy. The steps involved in the injection of trigger points are:

1. Accurate identification of the trigger point.

2. Identification and elimination of aggravating factors.

3. The precise injection of the myofascial trigger points with 1% procaine (a local anesthetic).

4. Passive stretching of the involved muscle after the local anesthetic has taken effect; this is often aided by spraying the overlying skin with an ethyl chloride spray. In most FM patients, this myofascial therapy needs to be repeated over a period of several weeks and occasionally over several months.

Unresponsiveness is usually due to failure to eliminate an aggravating factor, imprecise injection of the trigger point, or failure to inject satellite trigger points. Trigger points are usually injected with 3 to 5 ml of 1-% procaine. Please note that these are not "steroid shots."

Performing "myofascial spray and stretch" often enhances the efficacy of trigger point injections immediately after the injections. Spray and stretch consists of an application of a vapocoolant spray, such as ethyl chloride over the muscle with simultaneous passive stretching. A fine stream of the spray is aimed toward the skin directly overlying the muscle with the active trigger point. A few sweeps of the spray are passed over the trigger point and the zone of reference. This is followed by a progressively increasing passive stretch of the muscle.

Evaluation by an occupational and physical therapist often provides worthwhile advice on improved ergonomics, biomechanical imbalance and the formulation of a regular stretching program. Hands-on physical therapy treatment with heat modalities is reserved for major flares of pain, as there is no evidence that long-term therapy alters the course of the disorder. The same comments can be made for acupuncture, TENS units and various massage techniques.


Treatment of Sleep Disorders

Non-restorative sleep is a problem for most of you and contributes to your feelings of fatigue and seems to intensify your experience of pain. Effective management involves:

  1. ensuring an adherence to the basic rules of sleep hygiene,
  2. regular low grade exercise,
  3. adequate treatment of associated psychological problems (depression, anxiety etc.)
  4. the prescription of low dose tricyclic antidepressants or TCAs (amitryptiline, trazadone, doxepin, imipramine etc.).

Some FM patients cannot tolerate TCAs due to unacceptable levels of daytime drowsiness or weight gain. In these patients, benzodiazepine-like medications such as Ambien (zolpidem) are usually very useful.

Some FM patients suffer from a primary sleep disorder, which requires specialized management. About 25% of male and 15% of female FM patients have sleep apnea. Unless specific questions about this possibility are asked, sleep apnea will often be missed. Patients with sleep apnea usually require treatment with positive airway pressure (CPAP) or surgery.

 By far the most common sleep disorder in FM patients is restless leg syndrome. This can be effectively treated with L-Dopa/ carbidopa (Sinemet 10/100 mg at suppertime) or clonazepam (Klonopin 0.5 or 1.0 mg at bedtime).


Exercise for FM

FM patients cannot afford not to exercise as de-conditioned muscles are more prone to microtrauma and inactivity begets dysfunctional behavioral problems. However, musculoskeletal pain and severe fatigue are powerful conditioners for inactivity. All FM patients need to have a home program with muscle stretching and gentle strengthening, and aerobic conditioning.

There are several points that need to be stressed about exercise in FM patients:

(1) Exercise is health training, not sport's training;

(2) Exercise should be non-impact loading;

(3) Aerobic exercise should be done for 30 minutes each day. This may be broken down into three 10-minute periods or other combinations, such as two 15 minute periods, to give a cumulative total of 30 minutes. This should be the aim—it may take 6-12 months to achieve this level.

(4) Strength training should emphasize on concentric work and avoid eccentric muscle contractions.

(5) Regular exercise needs to become part of the usual lifestyle; it is not merely a 3-6 month program to restore you to health.

Suitable aerobic exercise includes: regular walking, the use of a stationery exercycle or Nordic track (initially not using the arm component). Patients who are very de-conditioned or incapacitated should be started with water therapy using a buoyancy belt (Aqua-jogger). [We highly recommend ongoing pool exercise programs for both FM and ME/CFS patients to reduce pain and to safely increase conditioning.—Ed]


Recognition of secondary distress

As you suffer from chronic pain there is a distinct possibility that you may develop secondary psychological disturbances, such as depression, anger, fear, withdrawal and anxiety. Sometimes these secondary reactions become the "major problem" for some patients. The prompt diagnosis and treatment of these secondary features is essential to effective overall management of FM patients. 

Some FM patients develop a reduced functional ability and have difficulty being competitively employed. In such cases your doctor will hopefully act as an advocate in sanctioning a reduced or modified load at work and at home.

Unless you have a severe psychiatric illness (e.g., major depressive illness or a psychosis), referral to psychiatrists is usually non-productive.

Psychological counseling, particularly the use of techniques such as cognitive restructuring and biofeedback, may benefit some patients who are having difficulties coping with the realities of living with their pain and associated problems.


Fibromyalgia-associated syndromes

It is not unusual for FM patients to have an array of bodily complaints other than musculoskeletal pain. It is now thought that these symptoms are a result of the abnormal sensory processing as described in the previous section. Recognition and treatment of these associated problems are important in the overall management of your FM.

  • Chronic fatigue
  • Restless Leg Syndrome
  • Irritable Bowel Syndrome
  • Irritable bladder syndrome
  • Cognitive dysfunction
  • Cold intolerance
  • Multiple Sensitivities
  • Dizziness
  • Neurally Mediated Hypotension
  • Non-restorative sleep (above)

1. Chronic fatigue—The common treatable causes of chronic fatigue in FM patients are: (1) inappropriate dosing of medications (TCAs, drugs with antihistamine actions, benzodiazepines etc.); (2) depression; (3) aerobic deconditioning; (4) a primary sleep disorder (e.g. sleep apnea); (5) non-restorative sleep (see above); and (6) neurally mediated hypotension. A new drug called Provigil is of some help when used intermittently for management of fatigue.

2. Restless leg syndrome—This strictly refers to daytime (usually maximal in the evening) symptoms of (1) unusual sensations in the lower limbs (but can occur in arms or even scalp) that are often described as paresthesia (numbness, tingling, itching, muscle crawling); and (2) a restlessness, in that stretching or walking eases the sensory symptoms. This daytime symptomatology is nearly always accompanied by a sleep disorder—now referred to as periodic limb movement disorder (formerly nocturnal myoclonus). Treatment is simple and very effective—DOPA / Levodopa (Sinemet) in an early evening dose of 10/100 (a minority require a higher dose or use of the long acting preparations).

3. Irritable bowel syndrome—This common syndrome of GI distress that occurs in about 20% of the general population is found in about 60% of FM patients. The symptoms are those of abdominal pain, distension with an altered bowel habit (constipation, diarrhea or an alternating disturbance). Typically the abdominal discomfort is improved by bowel evacuation. Due to abnormal sensory processing these symptoms may be quite distressing to FM patients. Treatment involves (1) elimination of foods that aggravate symptoms; (2) minimizing psychological distress; (3) adhering to basic rules for maintaining a regular bowel habit; (4) prescribing medications for specific symptoms; constipation (stool softener, fiber supplementation and gentle laxatives such as bisacodyl), diarrhea (loperamide or diphenoxylate) and antispasmodics (dicyclomine or anticholinergic /sedative preparations such as Donnatal).

4. Irritable bladder syndrome—This is found in 40-60% of FM patients. The initial incorrect diagnoses are usually recurrent urinary tract infections, interstitial cystitis or a gynecological condition. Once these possibilities have been ruled out a diagnosis of irritable bladder syndrome (also called female urethral syndrome) should be considered. The typical symptoms are those of suprapubic discomfort with an urgency to void, often accompanied by frequency and dysuria. In a sub-population of FM patients this is related to a myofascial trigger point in the pubic insertion of the rectus abdominus muscles and may be helped by a procaine myofascial trigger point injection. Treatment involves: (1) increasing intake of water; (2) avoiding bladder irritants such as fruit juices (especially cranberry); (3) pelvic floor exercises (e.g. Kegel exercises); and (4) the prescription of antispasmodic medications (e.g. oxybutinin, flavoxate, hyoscamine).

5. Cognitive dysfunction—This is a common problem for many FM patients. It adversely affects the ability to be competitively employed and may cause concern as to an early dementing type of neurodegenerative disease. In practice the latter concern has never been a problem and patients can be reassured. The cause of poor memory and problems with concentration is, in most patients, related to the distracting effects of chronic pain and mental fatigue. Thus the effective treatment of cognitive dysfunction in FM is dependent on the successful management of the other symptoms.

6. Cold intolerance—About 30% of FM patients complain of cold intolerance. In most cases this amounts to needing warmer clothing or turning up the heat in their homes. Some patients develop a true primary Raynaud's phenomenon (which may mislead an unknowing physician to consider diagnoses such as Lupus (SLE) or scleroderma). Many FM patients have cold hands and feet, and some have cutis marmorata (a lace like pattern of purple discoloration of their extremities on cold exposure). Treatment involves: (1) keeping warm; (2) low-grade aerobic exercise (which improves peripheral circulation); (3) treatment of neurally-mediated hypotension; and (4) the prescription of vasodilators such as the calcium channel blockers (but these may aggravate the problem in patients with hypotension).

7. Multiple sensitivities—One result of disordered sensory processing is that many sensations are amplified in FM patients. In general FM patients are less tolerant of adverse weather, loud noises, bright lights and other sensory overloads. Treatment involves being aware that this is an FM-related problem and employing avoidance tactics.

8. Dizziness—This is a common complaint of FM patients. Before this symptom is attributable to FM a thorough evaluation for other neurological causes should be pursued (e.g. postural vertigo, vestibular disorders, 8th nerve tumors, demyelinating disorders, brain stem ischemia and cervical myelopathy). In many cases no obvious cause is found, despite sophisticated testing. Treatable causes related to FM include: (1) proprioceptive (awareness of posture, movement, changes in equilibrium) dysfunction secondary to muscle deconditioning; (2) proprioceptive dysfunction secondary to myofascial trigger points in the sterno-cleido-mastoids and other neck muscles; (3) neurally mediated hypotension (see below); and (4) medication side effects. Treatment is dependent on making an accurate diagnosis. In patients in whom no obvious cause is found a trial of physical therapy, concentrating on proprioceptive awareness may prove worthwhile relief.

9. Neurally mediated hypotension—Patients with this problem usually have a low blood pressure that does not go up normally on standing or on exercise. Although such patients often have a low ambient BP with postural changes, these findings are not a prerequisite for diagnosis. A tilt table test (sometimes with the infusion of isproterenol) is the most reliable way to confirm this diagnosis. Treatment involves: (1) education as to the triggering factors and their avoidance; (2) increasing plasma volume (increased salt intake, prescription of florinef); (3) avoidance of drugs that aggravate hypotension (e.g. TCA's, anti-hypertensives); (4) prevent the involuntary response (prescribe beta-adrenergic antagonists e.g. propranolol (inderal) or metoprolol (lopressor) or disopyramide (norpace), but these agents are only used as a last resort because they reduce exercise tolerance); and (5) minimize the efferent limb of the involuntary response (prescribe alpha-adrenergic agonists e.g. midodrine (proamatine) or anti-cholinergic agents.

 

Dr. Bennett is an internationally known FM specialist, Professor of Medicine at Oregon Health Sciences University (OHSU), and Chairman of Arthritis and Rheumatic Diseases Division.  Permission was granted to publish this article from the Oregon Fibromyalgia Foundation's website: www.myalgia.com. © 2002 Robert Bennett M.D., FRCP.


More resources

Chronic Pain Control by Dr. David Bell

Clinical Guides for Fibromyalgia

Complementary and Mainstream Treatment Approaches  by Dr. Jeanne Hubbuch

Conventional Medicine —an overview by symptoms of classes of drugs used to treat them

Developments in Fibromyalgia Treatments

Drugs that may cause FM by Dr. Byron Hyde

Dr. Lapp's Stepwise Approach to Managing FM

Guaifenesin protocol of Dr. St. Amand

Lapp-Campbell talk on Pacing

Milnaciprin Beneficial for Fibromyalgia in Patients with Inadequate Response to Duloxetine

Important articles on Treatment

Insights about FM and Chronic Pain

Pharmacological Therapies Approved for FM

Review of Nutritional Supplements Used for ME/CFS/FM

Supplements 

About Fibromyalgia

What is Fibromyalgia (FM)?

Fibromyalgia means “soft tissue and muscle pain.” The soft tissues are the tendons or ligaments. FM is a chronic pain syndrome often associated with ME/CFS, and sometimes confused with it. The pain can be severe enough to interfere with routine daily activities. It migrates, can be achy, burning, throbbing, shooting, or stabbing, and is worse in areas used most, such as the neck or back. FM may be associated with “tender points” which are painful when pressure is applied to them. Individuals often say they awaken feeling as if they hadn’t slept. A sudden onset of profound fatigue can occur during or following exertion. Many other symptoms are common to fibromyalgia, including stiffness on waking, memory and concentration problems, excessive sensitivity of the senses, headaches, Temporomandibular Joint Syndrome (TMJ), irritable bowel, and bladder and muscle spasm.


Who gets FM?

Medical research indicates that over 6 million people in the US have FM, and that 80-90% of them are women. On the other hand, there is an estimate that about 1 million people in the U.S. suffer from ME/CFS. However, about 80% of those with ME/CFS also suffer from FM—or about 800,000. Thus most people with ME/CFS also have FM, but most people with FM don’t have ME/CFS.


How is FM diagnosed?

The 1990 American College of Rheumatologists diagnostic criteria are:

1) Widespread pain for at least 3 months.

2) Pain in all four quadrants of the body: right side, left side, above and below the waist.

3) Pain in at least 11 of 18 specified tender points when they are pressed. These 18 sites cluster around the neck, shoulder, chest, hip, knee, and elbow regions.

No exclusions are made for the presence of concomitant radiographic or laboratory abnormalities.

Please note: In May 2010, the American College of Rheumatology (ACR) released new criteria for the clinical diagnosis of Fibromyalgia (FM). However not all health care providers are using these new criteria, so it is good for patients to be familiar with both. The new criteria recommend that the tender point examination be replaced with a combination of a widespread pain index (WPI) and severity scale of symptoms (SS). 

Using these new criteria, a diagnosis of Fibromyalgia will be made on the following basis:

The values and ranges allowed for the WPI and the SS scales should meet one of the combinations: WPI >7 AND SS >5 or WPI 3–6 AND SS >9.
Symptoms have persisted at this level for the past 3 months.
Patient does not have any other disorder or cause to explain the pain.

Read more about the diagnosis of FM.


Are FM and ME/CFS the same illness?

Research authorities vary in viewpoint as to the relation of FM and ME/CFS, but the best research to date indicates that the two illnesses, while often associated, are different and separable—both in nature of causation and in their pathophysiologies (effects on processes in the body.)

Medically, FM is classified as a rheumatological illness, and FM is most commonly diagnosed and treated by rheumatologists. ME/CFS historically comes more under the rubric of internal medicine or infectious disease. This difference occurs because ME/CFS very often presents with viral-like or infectious symptoms, which do not occur as often in FM. The primary symptom complexes in FM are 1) pain; 2) sleep disturbance; 3) fatigue and exhaustion. Viral and other infectious-type symptoms aremuch less frequent.

However, because of the similarities of many of the ME/CFS and FM symptoms, including the fact that many patients can have both, differential diagnosis can be a problem. It is very important that the two illnesses be diagnosed correctly because treatments for each are somewhat different.

A person with ME/CFS who is diagnosed with FM and treated accordingly may run into severe problems; and a person with FM who is incorrectly diagnosed with ME/CFS may also be treated improperly and lose the benefits of helpful treatments.

The fact that the two illnesses are the province of separate specialties can also lead to diagnostic problems. As a rheumatologist is trained in rheumatological illnesses, there are occurrences of ME/CFS being diagnosed as FM when the physician is not well-versed in ME/CFS diagnosis. And an infectious disease specialist may be prone to misdiagnosing FM as ME/CFS.

Therefore, when there is doubt about which illness a patient has, she or he should become familiar with the differences between the two illnesses and seek a physician who knows how to diagnose both illnesses.


Who treats FM?

Medically, FM is classified as a rheumatological illness, and FM is most commonly diagnosed and treated by rheumatologists.

How is FM treated?

There is presently no cure for FM. Treatment is aimed at reducing pain and improving sleep.

Most often prescribed medications include anti-inflammatories, tricyclics, and pain medications.

Lifestyle measures to lessen stress, balance exercise and rest, and the avoidance of factors that aggravate symptoms are helpful.

Many individuals have also benefited from incorporating nutritional approaches, physical or occupational therapy, counseling, and peer support groups as part of their treatment.

Recently three medications, Cymbalta, Lyrica, and Savella, have been approved for use in the treatment of FM.

Read more about the treatment of FM. For information about Cymbala, Lyrica and Savella, read an article about a German study comparing them.


Where can I find out more about FM?

There is a great deal of excellent research and clinical information about fibromyalgia. Please refer to other sections of this website, as well as to other Fibromyalgia websites listed below.

Fibromyalgia, like ME/CFS, continues to remain a somewhat controversial illness, and a number of doctors continue to believe that it causally is linked with psychiatric illness. However, like ME/CFS, extensive research has been done that demonstrates clear physiological dysregulation and abnormalities in FM patients. Obviously, as with any other chronic illness, a person with FM can develop secondary depression or anxiety.

More resources

Social Security Ruling for Evaluation of Fibromyalgia (eff. July 2012)

A study of 1555 FM Patients provides valuable insight

Clinical Guides for Fibromyalgia

Chronic Pain Control

Complementary and Mainstream Treatment Approaches

Comprehensive Treatment of Fibromyalgia

Drugs that can cause fibromyalgia by Dr. Byron Hyde

Insights about FM and Chronic Pain

New Study Finds That Pain Levels in Patients With Fibromyalgia Are Linked to Resting Brain Connectivity

Pharmacological Therapies Approved for FM

Presentation on Fibromyalgia by Dr. Byron Hyde

Review of Nutritional Supplements Used for ME/CFS/FM