Chronic fatigue syndrome fibromyalgia

The Common Threads of Fibromyalgia and Chronic Fatigue Syndrome

Fibromyalgia and Chronic Fatigue Syndrome: Differences

Chronic pain and fatigue are common symptoms of both fibromyalgia and chronic fatigue syndrome. The difference is that, in fibromyalgia, fatigue often takes a backseat to debilitating muscle pain. In chronic fatigue syndrome, people have an overwhelming lack of energy, but also can experience some pain.

Some more important differences between the two include:

  • What prompted the condition. Many people diagnosed with fibromyalgia fatigue report that their symptoms followed some sort of trauma — a physical injury or an emotional shock. On the other hand, chronic fatigue syndrome appears to spring from a viral infection like mononucleosis or influenza.
  • Distinct pain sites. People are diagnosed with fibromyalgia fatigue if they feel tenderness or pain in at least 11 of 18 distinct locations on their bodies. People with chronic fatigue syndrome do not have these pain sites.
  • Inflammation. People with chronic fatigue syndrome often complain of fever, swollen glands, and other signs of inflammation. Doctors find no evidence of inflammatory response in patients with fibromyalgia fatigue.
  • Sleep. Although chronic fatigue syndrome and fibromyalgia are both associated with disrupted REM sleep, a recent study from Japan found key differences in other sleep disturbances between people with CFS alone and those with CFS and fibromyalgia.

Fibromyalgia and CFS: Similarities

Beyond the common symptoms, researchers have found that fibromyalgia and chronic fatigue syndrome primarily occur in middle-aged people.

Also, both disorders appear to target women more often than men. About 80 to 90 percent of people with fibromyalgia fatigue are female. Chronic fatigue syndrome is four times more likely to occur in women than in men.

Treating Fibromyalgia Fatigue and Chronic Fatigue Syndrome

Given the similarities between the two syndromes, it’s no surprise that there’s much overlap regarding the recommended treatments for fibromyalgia fatigue and chronic fatigue syndrome. Common treatments between the two include:

  • Sleep. Getting plenty of sleep is key to managing the symptoms of both syndromes. Both sets of patients often experience disrupted sleep, so it is important that they maintain good sleep habits and avoid caffeine, alcohol, and tobacco. If necessary, talk to your doctor about using medication to aid in falling asleep.
  • Cognitive behavioral therapy. Patients with chronic fibromyalgia or chronic fatigue syndrome have been found to benefit from cognitive behavioral therapy, which teaches people how to recognize symptoms and self-treat using a variety of coping strategies such as relaxation therapy, cognitive pain management, and rest.

However, treatments do differ in a couple of important areas. While exercise has been found to be very beneficial to fibromyalgia patients — aerobic exercise in particular has been shown to relieve symptoms — chronic fatigue symptom patients are told to moderate any exercise, as their symptoms often grow worse following exertion.

People with chronic fatigue syndrome who have muscle aches often are prescribed non-steroidal anti-inflammation drugs (NSAIDs), like aspirin or ibuprofen for their pain. But NSAIDs have been found to have no effect on muscle pain involved with fibromyalgia. Patients with fibromyalgia most often find pain relief through the use of antidepressants.

The good news is that both syndromes can improve with careful diagnosis and thoughtful treatment.

Fibromyalgia versus Chronic Fatigue Syndrome: To identify a threat


Suffering from fatigue? Experiencing restless sleep? It could be Fibromyalgia or Chronic Fatigue Syndrome.

Think they are the same condition? Think again. While they share many commonalities, they are actually different conditions. This article will uncover their similarities and differences as well as explain how patients can identify and treat these threats to healthy living.

Overviewing the two conditions

According to health information from the Mayo Clinic,

Fibromyalgia (FM) is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that Fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Chronic Fatigue Syndrome (CFS) is a complicated disorder characterized by extreme fatigue that cannot be explained by any underlying medical condition usually for a minimum of 6 months. The fatigue may worsen with physical or mental activity but does not mitigate with rest.

Similar symptoms shared

CFS and FM are known to have a number of symptoms in common. Primarily, they include the following:

  • fatigue
  • chronic widespread pain
  • unrefreshing sleep
  • cognitive difficulties
  • dizziness

In fact, many of the risk factor triggers that elicit each condition are common to both. These include stress (physical or psychological), injury, acute illness, fractured sleep, and exertion

Other similarities include underlying features

Primarily, among similar underlying features is a malfunctioning of neurotransmitters (chemicals) in the brain. More recently, “Central Sensitivity Syndrome,” or CSS, is another key feature that involves the central nervous systems becoming highly sensitive to certain triggers. Depending on the condition, a patient could become sensitive to touch, temperature, certain foods, chemicals and an array of other environmental factors.

Subtle differences in symptoms

Symptom presentations are often more a case of degree than complete separation. For instance, the primary symptom in CF is fatigue, while the primary symptom of FM is pain. However, both conditions may involve both fatigue and pain.

CFS is more likely to be connected with flu-like symptoms, including:

  • a sore throat
  • swollen glands
  • frequent low-grade fever

FM involves other pain types not common in CFS. Severe hyperalgesia (amplified pain) and sometimes tactile allodynia (pain from light touch) is profound in FM patients. Additionally, many cases of CFS include one or both of these pain types.

And the diagnosis is

Diagnosis is another similarity between the two conditions. Both are regarded as “diagnosis of exclusion” meaning all other possible causes have been reviewed and discarded. No blood test or scan can tell you whether one has or doesn’t have FM or CFS. Instead, doctors rely heavily on patient history, symptom presentation, and tests to rule out conditions that cause similar symptoms.

FM includes a tender-point exam where the doctor looks for certain symptoms accompanied by pain at specific sites around the body. Another diagnostic method involves a set of symptoms along with answers to a questionnaire. Research suggests that both methods are effective at diagnosing FM and differentiating it from similar conditions.

Treating what ails you

With similar symptoms in common, FM and CFS are often treated the same way. For example, doctors frequently prescribe:

  • Selective Serotonin Reuptake Inhibitors (SSRIs), Tricyclic Antidepressants (TCAs)
  • Non-Steroid Anti-Inflammatory Drugs (NSAIDs), Opioids
  • Prescription sleep aids

Other kinds of treatments that may be recommended for both of these conditions include Cognitive Behavioral Therapy, acupuncture, and deep tissue massages.

Pain relief versus management of fatigue

In FM, the core of treatment tends to focus on pain relief whereas in CFS management flows toward dealing with fatigue. However, it’s often the same drugs and other treatments that help with both of these symptoms.

Interestingly, attributing CFS to a post-viral illness has gained some support in the medical community to the extent that some medical practitioners have prescribed anti-viral medications.

Further research needed to find more differences

Some experts say the differences between these two conditions most probably do not matter much. The reason is that the treatments are so similar.

As more research regarding FM and CF is conducted, the differences may grow more distinct. Until then, these two conditions will be regarded as more alike than different and a patient will face the same situation: living with a potentially debilitating chronic illness, and searching for treatments that help alleviate the many symptoms.

What is the difference between Fibromyalgia and Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome or CFS is a medical condition with an unknown cause, presenting initially with constant or recurring fatigue for 6 months or more. Myalgic encephalitis or ME is the now the internationally accepted term for CFS.

Fibromyalgia or FM is a medical condition with unexplained cause, often presenting with quadrant pain and multiple tender points for minimum of 6 months.

Fatigue and pain seem to be present in both conditions along with several other overlapping symptoms such as bowel problems, headaches, low mood etc. Both conditions are usually seen in women above the age of 40. Physiologically, both show reduced blood flow to the midbrain & cortex, symptomatic orthostatic tachycardia, non-refreshing sleep, suppressed hypothalamic pituitary axis, low levels of CSF serotonin & growth hormone, and genetic clustering of traits. Due to these similarities, they have been in the past suggested to be the same illness. Diagnosis would be based on whether a patient saw a Physician or a Rheumatologist.

Due their parallel presentation, these two disorders may possibly be related. Widely clubbed as twins, experts now understand the differences between Chronic Fatigue Syndrome(CFS) and Fibromyalgia. CFS is frequently triggered by a flu-like or infectious illness whereas, FM is triggered by trauma.

Treatment has yet to be tailored because of lack of specific etiology of the diseases. Symptom management, psychiatric assistance and supportive care are common routes taken. Diet and lifestyle modification long with alternative therapies (such as meditation, yoga, acupuncture etc.) have gained favor in recent times.

Comparing Chronic Fatigue Syndrome(ME) and Fibromyalgia :

CFS/ME FIBROMYALGIA
Type of illness Immunological Rheumatic/Arthritic
Predominant Presentation Fatigue or lack of energy!
Symptom often starts after a viral infection.
Pain (usually muscle or joint)!
Symptom is usually followed by physical trauma or emotional stress.
Duration of symptom Chronic (>6 month) Chronic (>6 month)
Site of pain No specific pain sites are seen. Pain or tenderness is seen in distinct locations. About 11/18 such sites have to been identified for diagnosis.
Inflammation Signs of inflammation such as fever, sore throat, swollen or tender lymph nodes are noted. No inflammation is seen.
Common Signs and symptoms
  1. Fatigue and weakness
  2. Generalized pain and malaise
  3. Sleep disturbances
  4. Dizziness
  5. Headaches
  6. Numbness, tingling
  7. Poor memory, confusion, irritability
  8. Bowel problems (bloating, diarrhea, constipation etc.)
  9. Anxiety/depression
Tests Diagnosis of exclusion
Normal levels of Substance P*
Increased levels of RNasaL**
Tender-point Exam
Increased levels of Substance P
Normal levels of RNasaL
Treatment options
  1. Fatigue management.
  2. Get plenty of sleep.
  3. Avoid alcohol, tobacco and caffeine.
  4. Avoid strenuous exercising.
  1. Pain relief.
  2. Get plenty of sleep.
  3. Avoid alcohol, tobacco and caffeine.
  4. Daily aerobic exercises.

*Substance P is a neurotransmitter that is responsible for pain stimulation.
**RNaseLis an enzyme which destroys viral RNA during an infection.

If you are struggling with Fibromyalgia please join the Fibromyalgia Support Community

Symptom Overlap

The main symptom of fibromyalgia is widespread pain. You can have pain on the right and left side of the body. It can also be above and below the waist. But the pain may also occur in only one or two places in the body, especially the neck and shoulders.

A diagnosis of fibromyalgia can be tricky, because fibromyalgia isn’t the only condition with widespread pain.

Besides pain, another major symptom of fibromyalgia is chronic fatigue. But patients with other conditions also have chronic fatigue.

There are other symptoms that may occur in fibromyalgia. But just like pain and fatigue, the symptoms are experienced by patients with other conditions. These symptoms include:

  • Thinking and memory problems (“fibro fog”)
  • Headaches, both tension and migraine
  • Sensitivity to temperature, light, and noise
  • Irritable bowel syndrome
  • TMJ syndrome
  • Morning stiffness
  • Numbing or tingling of the extremities
  • Sleep disturbances
  • Urinary problems

Any combination of these symptoms can also suggest the presence of other serious illnesses, such as:

  • Hypothyroidism
  • Sleep apnea
  • Rheumatoid arthritis
  • Lupus
  • Malignancy

Another reason fibromyalgia is hard to diagnose is the tendency for groups of symptoms to occur together in fibromyalgia patients. But the groups will not be the same for everyone. So, not everyone with fibromyalgia will have all the symptoms described above.

And because the symptoms can suggest multiple diseases, doctors need to rule them out first as they look for an explanation.

Chronic Fatigue Syndrome and Fibromyalgia Resources on the World Wide Web: A Descriptive Journey

Abstract

A wealth of information on chronic fatigue syndrome (CFS) and fibromyalgia is available on the World Wide Web for health care providers and patients. These illnesses have overlapping features, and their etiologies remain unknown. Multiple Web sites were reviewed, and selected sites providing useful information were identified. Sites were classified according to their content and target audience and were judged according to suggested standards of Internet publishing. Fifty-eight sites were classified into groups as follows: comprehensive and research Web sites for CFS and fibromyalgia, meetings, clinical trials, literature search services, bibliographies, journal, and CFS and fibromyalgia Web sites for the patient.

A renewed interest in chronic fatigue states began in the early 1980s with an outbreak in Lake Tahoe, Nevada. Following this cluster of cases of fatigue, there were reports that linked persistent fatigue and Epstein-Barr virus infection. To better characterize these conditions, the Centers for Disease Control and Prevention (CDC) convened a working group in April 1987 and developed a consensus case definition. The illness was called chronic fatigue syndrome (CFS) . An Australian group’s definition for CFS was also published in 1988 . To address the problems with the CDC case definition, the Green College criteria were published in 1991 . To better define the cases of fatiguing illnesses, the CDC case definition was revised in 1994 . With the publication of the various case definitions for CFS, it became obvious that other illnesses had overlapping symptoms, including fibromyalgia and certain psychiatric illnesses. Fibromyalgia has been characterized by severe pain and so-called tender points. However, patients with fibromyalgia often note fatigue, sleep disturbances, headaches, and paresthesia. Patients that fit the case definition for CFS will often fit the case definition for fibromyalgia and vice versa .

Since the 1980s, there has been an outpouring of articles and information on the World Wide Web on these 2 disorders. The causes of these disorders remain unknown and the subject of much controversy. The Internet has become an invaluable source of information on CFS and fibromyalgia because the conditions generate so much information and misinformation in the media. In this report, we provide a guide to various reliable Internet sources for health care providers and researchers as well as for patients with CFS and fibromyalgia. This review focuses on English-language Web sites devoted to CFS and fibromyalgia.

Methods

Search engines and lists of links included on the Web sites that we reviewed provided the addresses of hundreds of sites on CFS, fibromyalgia, and myalgic encephalomyelitis (ME). In addition, a literature search retrieved 1 article that discussed CFS Web sites . Each site was examined keeping in mind both the purpose of this article and the quality of Web site criteria as described by Health On the Net (http://www.hon.ch/) and other organizations that offer such guidelines. Of course, any guidelines proposed are voluntary for the developer, and many CFS sites are of unreliable scientific quality. Misinformation, sponsor bias, commercial sales, and lack of currency head the list of reasons that we chose to eliminate certain sites from our list. Goldenberg stated that of the 120 sites he studied that were dedicated to fibromyalgia, “less than 25% of sites provided reliable information on diagnosis, pathophysiology, and treatment.”

Many Web sites with CFS information contain their own search engines. Various search strategies were used, depending on the Web site and the capabilities of their search engine. When we thought it was helpful for the user to know a specific strategy, it was included in the description of particular sites reviewed below. The following terms were used: “chronic fatigue syndrome,” “CFS,” “fibromyalgia,” “myalgic encephalopathy,” and “myalgic encephalomyelitis.”

Results

Comprehensive and research Web sites for CFS and fibromyalgia. There are a number of Web sites that give comprehensive information on CFS and fibromyalgia (table 1). The CDC’s CFS Home Page is an excellent site that provides both professional and patient information on support groups, research, CDC publications, and clinical management of CFS and fibromyalgia (figure 1). However, the management page was last updated in 1998 and, ideally, should be revised yearly. Much of the information on this site is written at the consumer level but remains relevant for the health care provider as well.

Table 1

Comprehensive and research web sites for chronic fatigue syndrome (CFS) and fibromyalgia.

Table 1

Comprehensive and research web sites for chronic fatigue syndrome (CFS) and fibromyalgia.

Figure 1

A screen shot of the Centers for Disease Control and Prevention’s Web page on chronic fatigue syndrome

Figure 1

A screen shot of the Centers for Disease Control and Prevention’s Web page on chronic fatigue syndrome

The National Institute of Allergy and Infectious Diseases (NIAID) thoroughly reviews CFS. It has an excellent site with a current fact sheet for patients and a summary of a meeting held in February 2000 that includes a discussion of research areas for study. Beginning at NIAID’s home page, either use the “search” option to bring up a list of NIAID Web pages on CFS or click on “information” and then on “publications.” The latter displays a list of topics including CFS.

The United Kingdom’s Department of Health Web site includes a page entitled “Chief Medical Officer’s Working Group on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” This page links the user to various meeting briefings which focus on CFS in both adults and children. These briefings are excellent discussions that deal with many unanswered issues of CFS and ME. Also of interest is their working paper titled “Discussion Document: an Overview of Recent Research Literature.” The full document, written in February 1999, is available on-line in portable document format.

The “Chronic Fatigue Syndrome Clinical Practice Guidelines” developed by the Royal Australasian College of Physicians appear on the Medical Journal of Australia Web site. A comprehensive clinical guideline is presented on CFS that is outstanding, current, and well referenced.

The CFS Doctors Page includes a brief discussion of diagnosis and treatment as well as links to other key CFS Web sites and a private discussion group limited to physicians only. The New Jersey Chronic Fatigue Syndrome and Fibromyalgia Center maintains a Web site in conjunction with the University of Medicine and Dentistry of New Jersey. This site focuses primarily on their current studies and how to enroll as a research subject.

The CFS Research Team site of De Paul University includes a number of excellent screening questionnaires used to evaluate and follow up patients with CFS. This site is extremely current and includes articles published in 2000 as well as in press articles.

The Web site for Georgetown University Medical Center’s Chronic Pain and Fatigue Research Center contains a useful evidence-based treatment section. It also lists current studies but lacks information such as inclusion and exclusion criteria.

The American Fibromyalgia Syndrome Association is a nonprofit group that funds pilot studies on fibromyalgia and CFS and organizes a conference on updates of these disorders. Their Web site contains a listing of funded projects, grant applications, and a resource list that includes sources for CFS books and videos.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMSD) includes a page on their site titled “Fibromyalgia Research: Challenges and Opportunities” (figure 2). It gives background information on fibromyalgia and lists the NIAMSD research initiatives.

Figure 2

A screen shot of the National Institute of Arthritis and Musculoskeletal and Skin Diseases’ Web page on fibromyalgia

Figure 2

A screen shot of the National Institute of Arthritis and Musculoskeletal and Skin Diseases’ Web page on fibromyalgia

The American Association for Chronic Fatigue is a nonprofit organization of research scientists, health care providers, institutions, and others interested in research and issues related to CFS. This site developed as a result of the work of a national support group, the Chronic Fatigue Immune Dysfunction Syndrome Association of America. Their Web site includes a list of research projects, a registry of physicians with CFS, position articles, minutes from their national meetings, and links to bibliographies and to other sites. The yearly national meetings have improved since their inception with more scientific content. However, many of the presentations are preliminary studies and never get published in peer-reviewed journals.

Meetings. Three Web sites provide information on professional meetings that deal with CFS and fibromyalgia (table 2). The US Department of Health and Human Services formed the Chronic Fatigue Syndrome Coordinating Committee, which meets several times a year and is open to the public. In addition to the meetings, this committee sponsors a Chronic Fatigue Syndrome State of the Science Conference, most recently held on 23–24 October 2000. Their relatively new Web site provides an agenda for these meetings and information relevant to the formation of the committee. It will be worth a second look in the coming months to see if the scientific conference presentations are added to the site.

Table 2

Web sites of meetings on chronic fatigue syndrome and fibromyalgia.

Table 2

Web sites of meetings on chronic fatigue syndrome and fibromyalgia.

Clinical trials. Information on clinical trials can be accessed at several Web sites (table 3). The National Library of Medicine, in conjunction with the National Institutes of Health and the US Food and Drug Administration, maintains Clinical Trials, a Web site for both active clinical trials and those no longer accepting patients. The term “fibromyalgia” retrieved 5 trials, all recruiting patients. The studies listed included the following: “Assessing Fibromyalgia Therapies,” “Subgroups of Fibromyalgia,” “Behavioral Treatment of Fibromyalgia,” “Behavioral Insomnia Therapy for Fibromyalgia Patients,” and “Eligibility Screening for National Institute of Dental and Craniofacial Research Studies.” No trials for CFS were identified.

Table 3

Web sites of clinical trials on chronic fatigue syndrome and fibromyalgia.

Table 3

Web sites of clinical trials on chronic fatigue syndrome and fibromyalgia.

CenterWatch Clinical Trials Listing Service, a division of Medical Economics Company, also lists clinical trials. One study involving patients with fibromyalgia is titled “The Regulation of Adrenal Function in Fibromyalgia.”

Current Controlled Trials, an international site developed by the Current Science Group headquartered in London, summarizes studies listed by various agencies such as the National Institutes of Health and National Research Register. The terms “fibromyalgia,” “chronic fatigue,” and “myalgic encephalomyelitis” were successful in finding different clinical trials using acupuncture, exercise, cognitive behavior therapy, and homeopathic treatment.

Literature search services. A variety of literature search services are available on the Web (table 4). Most of the choices reviewed here are free but may link the user to full-text items that would incur a charge. The most likely first choice for searching the medical literature remains the National Library of Medicine’s MEDLINE, now in the form of PubMed. The National Library of Medicine’s most recent addition to their search services is their consumer site, MEDLINEplus, a site offering a wide range of resources beyond the basic MEDLINE database. Results of a search for fibromyalgia in MEDLINEplus included both consumer and professional information in the form of dictionary definitions, clinical trials, directories, organizations, and various other links as well as the traditional bibliographic citations in the PubMed database. Other specialized search services include the Cochrane Library, Medical Matrix, and UnCover. In addition, there are Web sites that specialize in dissertations, such as UMI ProQuest, and Contentville.com, a recent addition to the Web.

Table 4

Web sites of literature search services for chronic fatigue syndrome (CFS) and fibromyalgia.

Table 4

Web sites of literature search services for chronic fatigue syndrome (CFS) and fibromyalgia.

Cochrane Library is an evidence-based medicine database containing full reviews, protocols, and abstracts to clinical trials. Reviews for fibromyalgia and CFS included one on “Cognitive Behaviour Therapy for Adults with Chronic Fatigue Syndrome” and another on “Multidisciplinary Rehabilitation for Fibromyalgia and Musculoskeletal Pain in Working Age Adults.” Although the full text of the Cochrane Library is accessed through paid subscription only, citations to the reviews are included in PubMed. In addition, UpdateUSA, the American distributor of this British product, has a link allowing the nonsubscriber to request full-text document delivery of individual reviews. The search engine for Medical Matrix retrieves information from both its site and a host of other medical Web sites including full-text on-line textbooks, journals, symposia, and consumer health sites.

The UnCover database allows free keyword, author, or journal title search access to >18,000 journal titles that cover many academic fields. The field of medicine is well represented, and a search for “fibromyalgia” yielded multiple pages of citations from 1988 to the present. An added feature of UnCover is their product called UnCover Reveal. The user who subscribes to this service pays a subscription fee that allows them to store ⩽25-keyword or author searches plus a maximum of 50 journal titles from the UnCover database. The results, which include relevant citations and table of contents, are sent to the user’s e-mail address on a weekly basis.

UMI ProQuest allows the visitor (a nonsubscriber) to access the most recent 2 years of their Digital Dissertations. A variety of citations for masters and doctoral level dissertations were retrieved by use of the following terms: “fibromyalgia,” “chronic fatigue,” and “myalgic.” The same search in Contentville.com brought up a list of 89 dissertations. Both UMI ProQuest and Contentville.com offer the user an on-line payment option to obtain the full dissertation.

Bibliographies. Several Web sites provide updated bibliographies on CFS (table 5). Ward’s Web Site includes a description of the site as a “work space” for physicians and patients that will aid in the diagnosis and treatment of persons with CFS. The site consists mainly of a listing of journal articles and other articles on this topic. Readers are encouraged to contribute their findings and correspond on a public message board.

Table 5

Web sites of bibliographics on chronic fatigue syndrome (CFS) and fibromyalgia.

Table 5

Web sites of bibliographics on chronic fatigue syndrome (CFS) and fibromyalgia.

The Alison Hunter Memorial Foundation maintains a Web site of citations grouped into 58 subject categories; Scientific References for CFS includes a search engine to help the user locate specific abstracted citations.

Two comprehensive bibliographies that appear on the Internet are Dr. McGoodwin’s Medrefs and the Chronic Fatigue Syndrome and Fibromyalgia Database and Fibromyalgia Information from the Oregon Fibromyalgia Foundation. Both sites contain >2000 references, some from the 1800s.

Journal of Chronic Fatigue Syndrome. The Journal of Chronic Fatigue Syndrome is available in various forms on 2 sites, although full text is not available on-line (table 6). The CFS-News site has a description of the journal, and BUBL, an Internet information service for higher education in the United Kingdom, maintains a keyword searchable index to issues of the journal.

Table 6

Web sites of the Journal of Chronic Fatigue Syndrome (JCFS).

Table 6

Web sites of the Journal of Chronic Fatigue Syndrome (JCFS).

CFS Web sites for the patient. The CFS Web sites for consumers and patients that were chosen for inclusion here were selected as a representation of the most informative sites and have value to the health care provider and the patient with CFS (table 7). Commercial consumer health megasites were not included, although they offer informational pages on CFS and fibromyalgia.

Table 7

Web sites for patients with chronic fatigue syndrome (CFS) and fibromyalgia.

Table 7

Web sites for patients with chronic fatigue syndrome (CFS) and fibromyalgia.

The ME Association of the UK and the ME/Chronic Fatigue Syndrome Society of Victoria, Australia, represent 2 sites outside of the United States that provide a comprehensive array of information and support. As with many sites in the United States, some content on these sites is uniquely valuable to residents in Australia and the UK.

The CFS-News site (or Chronic Fatigue Syndrome/Myalgic Encephalopathy) also contains a long list of links to worldwide resources. Roger Burns maintains this page and the electronic newsletter, CFS-News, and 2 newsgroups, CFS-L and CFIDS-L. The former is a patient support group that began in 1992 with a current membership of ∼2000, while the latter is a political action group for CFS advocacy.

Another activist organization is the National Fibromyalgia Research Association based in Salem, OR. Information and current research on the controversial surgery for Arnold-Chiari malformation is included on their site.

The Chronic Fatigue Syndrome and Fibromyalgia Information Exchange Forum moderates a mailing list, “Co-operate and Communicate for a Cure.” Their Web site contains a reading resource list, instructions for joining the mailing list, and a wealth of links to additional sites. It has a list of current research and includes Spanish-language information.

The Fibromyalgia Association of Greater Washington provides an informative Web site. Their publication list includes on-line publications, audiotapes produced by the association, and links to books and pamphlets for purchase throughout the Web.

About.com is a commercial site that maintains hundreds of pages on an eclectic array of topics. Each topical page is written by a site guide knowledgeable on their chosen subject. The guide for the Chronic Fatigue Syndrome/Fibromyalgia page is a patient with CFS. A long list of subject categories guides the user to current material on diagnosis and treatment options, disability information, and support groups.

The CFIDS Association of America is a charitable organization interested in providing support for CFS education and research. It promotes involvement in grassroots advocacy and support groups. Its Web site offers a broad spectrum of current information, education, and news. This is one of several sites listed in table 7 that offers significant information for and about children with CFS.

The Fibromyalgia Network is a well-organized site that includes a quarterly newsletter, current information, links to other sites, and printed brochures and books.

There are several statewide CFS organizations that maintain Web sites. One example is the Wisconsin Chronic Fatigue Syndrome Association.

One concern to the patient with CFS is disability benefits. Look for the column in table 7 that identifies sites that contain disability information. Included in this list is the US Social Security Administration site and their fact sheet for patients with CFS.

Discussion

CFS and fibromyalgia are disorders diagnosed by a specific set of symptoms, including fatigue, pain, and neurocognitive difficulties such as sleep disturbance, cognitive dysfunction, and/or mood problems. These are overlapping disorders that have had a resurgence of interest since the late 1980s. To date, no clear pathophysiology or etiologies have been identified. Although abnormal results of laboratory tests such as evidence of immune activation, diminished cortisol secretion, positive tilt table test, and increased level of ribonuclease I may occur, a diagnostic marker is lacking . Routine laboratory studies and results of physical examination are normal for patients with CFS. The diagnosis of CFS is one of exclusion. Although tender points occur in patients with CFS and fibromyalgia, their presence is not essential for the diagnosis.

It is likely that CFS and fibromyalgia are heterogeneous disorders with multiple predisposing factors (e.g., genetic precipitating factors and infection) and perpetuating factors (e.g., deconditioning). Patients with postinfection fatigue disorders may differ from those with trauma or stress at the onset. It is unclear why 75% of patients with these disorders are women. These disorders occur in children, but case definitions for children are lacking. Fibromyalgia and CFS occur worldwide.

Both pharmacological and nonpharmacological agents have been used to manage patients with symptoms of CFS and fibromyalgia. Most of the therapy administered is based on results of uncontrolled studies or anecdotal data. Because a diagnostic marker is lacking to monitor the outcome of a therapeutic intervention, controlled trials are essential for these patients. Health care providers are confronted daily with Web citations of news reports and articles detailing putative cures. For example, the identification of the Arnold-Chiari malformation in some patients with CFS and a “cure” following surgery have added hope as well as confusion to the field since controlled trials for surgery are lacking. The health care provider must monitor the Web to stay current in this rapidly evolving field. However, scientifically reliable sites are key, and the Internet can be a major source of invaluable information as well as misinformation and confusion.

Conclusion

The Web sites compiled in this article are a significant representation of the quality information available on the Internet for CFS and fibromyalgia. Although we analyzed multiple sites, only a small proportion were selected for review, and some valuable sites were undoubtedly overlooked. A vast amount of information currently exists on the Web for subjects with CFS, and this resource should play an increasing role in the future. As the number of sites increases, however, it may become more difficult to evaluate them. Because few sites are peer reviewed or ranked, this resource has the potential to provide misinformation as well as valuable knowledge. Objective evaluation and designation of CFS and fibromyalgia Web sites by peer-review consensus committees would be especially valuable to health care professionals and patients with CFS.

Acknowledgment

We thank Dr. Victor Yu for his critical review of the manuscript and helpful suggestions.

1 Holmes GP , Kaplan JE , Gantz NM , et al. Chronic fatigue syndrome: a working case definition, Ann Intern Med, 1988, vol. 108 (pg. 387-9) 2 Lloyd AR , Wakefield D , Boughton C , Dwyer J . What is myalgic encephalomyelitis?, Lancet, 1988, vol. 1 (pg. 1286-7) 3 Sharpe MC , Archard LC , Banatvala JE , et al. A report—chronic fatigue syndrome: guidelines for research, J R Soc Med, 1991, vol. 84 (pg. 118-21) 4 Fukuda K , Straus SE , Hickie I , et al. International Chronic Fatigue Syndrome Study Group. The chronic fatigue syndrome: a comprehensive approach to its definition and study, Ann Intern Med, 1994, vol. 121 (pg. 953-9) 5 Goldenberg DL , Simms RW , Geiger A , Komaroff AL . High frequency of fibromyalgia in patients with chronic fatigue seen in a primary care practice, Arthritis Rheum, 1990, vol. 33 (pg. 381-7) 6 King A . Sick and tired: World-Wide Web resources on fibromyalgia and chronic fatigue syndrome, Health Care on the Internet, 1997, vol. 1 (pg. 53-9) 7 Goldenberg DL . Fibromyalgia: is recovery impeded by the Internet? , Arch Intern Med, 2000, vol. 160 (pg. 1039-40) 8 Landay AL , Jessop C , Lennette ET , Levy JA . Chronic fatigue syndrome: clinical condition associated with immune activation, Lancet, 1991, vol. 338 (pg. 707-12) 9 Caligiuri M , Murray C , Buchwald D , et al. Phenotypic and functional deficiency of natural killer cells in patients with chronic fatigue syndrome, J Immunol, 1987, vol. 139 (pg. 3306-13) 10 Demitrack MA , Dale JK , Straus SE , et al. Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome, J Clin Endocrinol Metab, 1991, vol. 73 (pg. 1224-34) 11 Bou-Holaigah I , Rowe PC , Kan J , Calkins H . The relationship between neurally mediated hypotension and the chronic fatigue syndrome, JAMA, 1995, vol. 274 (pg. 961-7) 12 de Meirleir K , Bisbal C , Campine I , et al. A 37 kDa 2-5A binding protein as a potential biochemical marker for chronic fatigue syndrome, Am J Med, 2000, vol. 108 (pg. 99-105) © 2001 by the Infectious Diseases Society of America

May 12 is ME/CFS and Fibromyalgia International Awareness Day

May 12 is ME/CFS International Awareness Day, a day to bring attention to how ME/CFS affects those suffering from the illness.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Often, people with ME/CFS may not be able to do their usual activities. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.

How to Participate in ME/CFS Awareness Day

ME/CFS Awareness Day is being observed around the world in many different cities and countries. This day helps bring awareness to ME/CFS patients, families, caregivers, and researchers. You can show your support by a range of activities:

  • Wearing the color blue on May 12, 2019.
  • Looking for and supporting local ME/CFS events in your community.
  • Considering planning an event if there is not one in your community.
  • Sharing your personal stories about ME/CFS.
  • Telling a neighbor or friend about ME/CFS.
  • Learning more about ME/CFS (see links below).

Get Informed, Get Diagnosed, and Get Help

ME/CFS remains a poorly understood illness – there is no known cause and many people who have ME/CFS have not been diagnosed. We have posted a video that focuses on the daily challenges of ME/CFS from the perspective of the patient, including the most pertinent challenge of having to miss important life events. We hope this video raises awareness about how debilitating ME/CFS can be. You can watch this video here.

Additionally, the updated website has a section dedicated to sharing stories from patients with ME/CFS. The “Voice of the Patient” project allows patients to share their experiences with ME/CFS. Read stories each patient shares in his or her own words.

Join us in taking action to raise awareness about ME/CFS and lend support to those who have been affected by this illness.

What Can You Do?

Educate. Knowledge is key to raising awareness about ME/CFS. For this awareness day, take time to learn more about this illness by visiting any of the links below. Share your personal stories about ME/CFS and take the time to listen to others’ stories.

Support. During this awareness day, there are many ways you can show support. Wear the color blue on May 12, 2019, to raise awareness and show support to patients, families, caregivers, and researchers of ME/CFS. Use social media to spread knowledge about ME/CFS and to highlight individuals who suffer from this illness.

What Can Healthcare Providers Do?

A new section of CDC’s ME/CFS website for healthcare providers incorporates recommendations from the 2015 Institute of Medicine (IOM) reportexternal icon. In addition to the updated diagnostic criteria, the report also provides healthcare professionals with insight into the challenges and barriers of caring for patients with ME/CFS.

Listen. ME/CFS is a complex, real illness that is difficult to diagnose. Each patient is unique, and requires an individualized treatment program that best meets the needs of their illness. Listen to them and communicate with them in order to deliver effective care.

Empathize. ME/CFS changes people’s ability to perform daily tasks that were previously easy to complete. The illness can last for years and sometimes leads to serious disability. Communicate with patients and show them that you understand and believe them.

Treat symptoms effectively. Helping patients get relief from symptoms and improve their quality of life are the main goals of treatment. Familiarize yourself with the illness using the resources provided on the CDC website, under the Information for Healthcare Providers tab. A new course on ME/CFS can be found at Medscape’s websiteexternal icon.

For pediatric ME/CFS, the fact sheet for healthcare providers can be found on CDC’s ME/CFS website. Please look for upcoming fact sheets for healthcare providers on the website.

What Can Families Do?

Speak up for your Loved One. Take an active role in helping your family member manage their illness. Talk with your family’s healthcare provider about your loved one’s needs and concerns. Educate people involved in your loved one’s life about ME/CFS so that they can better understand when accommodations are needed. If you are a parent of a child living with ME/CFS, speak with your child’s educators and counselors to ask questions, express concerns, and initiate educational support.

Educate yourself. Learn as much as you can about ME/CFS and about how the illness affects your family member. Fatigue, pain, and concentration or memory issues can make it difficult for those living with ME/CFS to participate in daily activities. Children with ME/CFS often cannot attend school. Take advantage of the resources in your community in order to accommodate your child and his or her unique illness.

Socialize. With limited social involvement, those with ME/CFS may feel isolated from their friends and peers. It can be challenging for families to be involved in social events or family activities. Social activities are essential for the well-being of patients and their families.

For more information about ME/CFS in children, the fact sheet for parents and guardians can be found on CDC’s ME/CFS website.

What Can Schools Do?

Understand. Educate staff about ME/CFS in order to empathize with students suffering from the illness. Each child with ME/CFS may experience different symptoms and the duration of their symptoms may differ as well. Take time to understand each student’s individual illness and challenges.

Collaborate. A key to helping students with ME/CFS is to work as a team with their teachers, parents, administrators, other education professionals, and healthcare professionals. This team approach can provide flexibility with educational plans and school resources that are customized to target and reflect the student’s needs.

Accommodate. Because ME/CFS is a complex disorder that affects how students learn and participate in school, teachers and administrators may want to be creative in developing strategies to foster an encouraging learning environment for their students with ME/CFS. Accommodations might include time extension on exams and assignments, scheduled rest periods throughout the school day, combined school and home tutoring, and more.

For more information about ME/CFS in students, the fact sheet for education professionals can be found on CDC’s ME/CFS website.

Roadmap for Chronic Fatigue Syndrome & Fibromyalgia

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(First in the series For Family and Friends.)
When someone you know developed symptoms of Chronic Fatigue Syndrome (CFS) or fibromyalgia (FM), you may at first have thought the problem was a lingering short-term illness.
But at some point you realized that your loved one had entered a new realm: the world of chronic illness. Instead of resuming familiar patterns and routines, the person with CFS or FM was faced with the prospect of adjusting to a different life.

And her illness presented you with challenges as well. Here are some of the issues often faced by family members of people with Chronic Fatigue Syndrome or fibromyalgia. (Some also apply to friends.)

  • Extra household tasks
  • Financial strains
  • Caregiving responsibilities
  • Strained relationships
  • Worry and uncertainty about the future
  • Uncertainty about how to help the person who is ill
  • Resentment and frustration
  • Sadness and depression
  • Increased stress
  • Sexual difficulties
  • Loss of companionship
  • Strained communication
  • Less socializing
  • Extra parenting responsibilities

This chapter gives a roadmap for the world of long-term illness, offering first a description of CFS and FM, and, second, a framework for understanding your situation as a family member or friend of someone with Chronic Fatigue Syndrome or fibromyalgia.

Chronic Fatigue Syndrome and Fibromyalgia

Overview: Chronic Fatigue Syndrome and fibromyalgia are now widely recognized as real illnesses, not psychological problems. Diagnostic criteria have been established for both and a diagnosis of either condition qualifies a person to receive disability payments.

Both CFS and fibromyalgia are common. Research suggests that there are probably more than one million people with CFS in the United States, and comparable or greater numbers in other countries. About three-quarters are women. Estimates of the prevalence of fibromyalgia vary, but there are probably at least four to five million people in the United States with FM, possibly many more. Studies suggest that more than 90% are women.

Symptoms: The average person with CFS or fibromyalgia has moderate to severe symptoms and experiences a reduction in activity level of between 50% and 85%. Both conditions are characterized by the presence of several to many symptoms.

The central symptom of CFS is a fatigue that is experienced as deep exhaustion that is often intensified by activity. Other prominent symptoms include pain, sleep that is not refreshing and cognitive problems that include confusion, difficulty concentrating, fumbling for words and lapses in short-term memory.

Other symptoms that often appear with CFS include headaches, low-grade fevers, sore throat, tender lymph nodes, anxiety and depression, ringing in the ears, dizziness, abdominal pain (gas, bloating, periods of diarrhea and/or constipation), allergies and rashes, sensitivity to light and sound, abnormal temperature sensations such as chills or night sweats, weight changes and intolerance of alcohol.

The most prominent symptom of fibromyalgia is widespread pain. Other common symptoms include poor sleep, fatigue and cognitive difficulties. Many other symptoms may accompany fibromyalgia, including tension or migraine headaches, strong emotions such as depression and anxiety, jaw pain, ringing in the ears, dizziness, rashes, sensitivity to light, sounds, smells and temperature, and dry eyes or dry mouth.

A majority of people diagnosed with either CFS or fibromyalgia are later found to have the other condition as well. In addition, people with either or both conditions often have additional medical problems, such as irritable bowel syndrome (IBS), food and chemical sensitivities, sleep disorders (for example, apnea and restless legs syndrome), myofascial pain and thyroid conditions.

Treatments and Prognosis: Because there is so far no cure for either CFS or fibromyalgia, treatment focuses on controlling symptoms and improving quality of life. Approaches include medications, alternative treatments and self-help measures.

Medications are often used for improving sleep and controlling pain, though their effectiveness varies greatly from patient to patient. Since no medication is consistently effective, treatment usually consists of a process of trial and error to find what works for an individual patient. Patients can usually improve, or at least control symptoms, by adjusting their activity level, reducing stress and improving sleep.

For most people, CFS and fibromyalgia are long-term conditions. As mentioned earlier, no cure has been developed so far for either condition. A few people recover, many patients improve over time, while others remain stable and a few decline.

Effects: Chronic illness is a challenge to manage because its effects are so comprehensive. CFS and fibromyalgia touch every aspect of life: a patient’s ability to work, relationships, emotions, dreams for the future and their sense of who they are.

Complicating the challenge, there is an interaction between illness and other parts of life. CFS and FM restrict a person’s life, but, in turn, can be worsened by how a patient lives. (See diagram.) For example, illness puts limits on a person’s activity level. But, if a person with CFS or FM does more than their body can tolerate, the overactivity causes a higher level of symptoms.


Interactions of Illness and Other Factors

The same pattern of reciprocal effects is true for other elements as well, such as the relation between illness and stress. Living with symptoms on a daily basis is inherently stressful. In addition, illness often creates new stress because of factors such as financial pressure, strained relationships and uncertainty about the future. In all these ways, illness increases stress.

But, reciprocally, stress often worsens symptoms. People with CFS and FM are very stress sensitive, so that even moderate amounts of stress can greatly intensify symptoms, creating a feedback loop in which symptoms and a patient’s reaction to them intensify one another.

Similarly, there is a two-way relationship between illness and feelings. Emotions like worry, anger, depression and grief are normal reactions to chronic illness, understandable responses to a situation in which life is disrupted and routine replaced with uncertainty.

Patients may experience a vicious cycle, in which illness intensifies emotions and then emotions, in turn, intensify symptoms. For example, people who become depressed because of their illness have a lower threshold for pain. Also, pain can be intensified by anger, because anger usually creates muscle tension.

In summary, CFS and fibromyalgia have comprehensive effects, touching many parts of a patient’s life. They are much more than simple medical problems. A plan for managing them has to address all its effects, not just symptoms.

Individual Differences: Just as CFS and fibromyalgia are comprehensive in their effects, so too are they tremendously varied. Some people have relatively mild cases, while others may be bedridden. Most people are in between.
Most people taking our self-help class rate themselves as functioning between about 15% and 35% of normal, but some are housebound or bedbound, while others work part time or even full time.

Also, there are many different patterns of symptoms. For some people, fatigue may be the most bothersome symptom, while for others it is pain. Adding to the complexity, an individual’s illness may vary over time. Some symptoms may disappear, only to be replaced by new ones.
Some people may have a relatively stable course, while others may fluctuate between times of severe symptoms and times of remission. The bottom line: each person’s illness is different, so a plan to manage CFS or fibromyalgia must be tailored to each person’s unique circumstances.

Your Situation

Serious illness has profound effects on family and friends, not just the person who is ill. And, just as each person with CFS and FM is different and needs to develop an individualized self-management plan, so, too, do you need to tailor your response to your unique circumstances.

Factors Shaping Your Situation

Probably the most important factor shaping your situation is the severity of your loved one’s medical problems. The amount of disruption to your life and the amount of adaptation required of you will be dictated by the number and seriousness of the health issues faced by your loved one and by your relationship to her.

For those families in which the patient’s life is touched only lightly by CFS or fibromyalgia and often for friends, the adjustments may be relatively minor. But when the illness is severe, the stresses can be great and the caregiving responsibilities substantial.

A second important factor is your circumstances (age and health) and the life stage of your family. If you are young and vigorous, your ability to take care of the person with CFS or fibromyalgia is different than if you are older and perhaps dealing with your own health problems. Likewise, the life stage of your family situation is important. If you have school age children, they are a major responsibility. If your children are grown, they may be sources of help.

A third significant aspect of your situation is your finances. The financial circumstances of families living with CFS and FM varies enormously. Some families experience little change in their financial condition, either because the patient is a child, the patient wasn’t working when he or she became ill or continues to work, or the patient receives disability payments.
For others, however, financial pressure can be a source of great stress, as family income is reduced by half or more. Adjustments families make include the well spouse changing jobs, the family reducing spending or even moving to a less expensive home.

A family’s ability to cope depends on other resources besides money. Support from extended family and from community resources such as friends and religious groups can spread the burden of coping with long-term illness. On the other hand, those families that are isolated from outside sources of support have to be more self-reliant.

Coping Skills & Attitude

Finally, your family’s ability to deal successfully with CFS or fibromyalgia will be shaped by your coping skills and attitude. The way CFS and fibromyalgia patients and those around them conduct their lives has a major impact on the patient’s symptoms and on everyone’s quality of life. Your actions and those of the patient can change effects of CFS or FM and may even change the course of the illness.

Living well with CFS or FM requires a level of management similar to that for other serious, long-term conditions, such as diabetes: major, long-term lifestyle changes to control the illness. Your actions and attitudes will have an important effect on your loved one’s symptoms. By helping him or her adjust to their limits and by working to create a stable and predictable environment with lowered stress, you contribute to his or her well being.

You may not be able to change the fact that someone in your life has Chronic Fatigue Syndrome or fibromyalgia, but together you can learn new and more effective ways to deal with the condition. Research stretching back 30 years has proven that the people who do best living with chronic conditions are those who believe in their ability to exercise some control over the illness.
These people do not deny that someone is ill, nor do they hold unrealistic hopes for recovery, but they have confidence that they can find things to make their lives better.

Finally, there is one more factor that is important to living well with long-term illness: attitude. The approach to living with chronic illness that we have found helps people cope can be characterized as being at the same time both realistic and optimistic. We call it acceptance with a fighting spirit.

People with this attitude combine two apparently contradictory ideas. On the one hand, they accept that the illness in their life is a long-term condition. Instead of living as if the patient were well or searching for a miracle cure to restore good health, people with this approach acknowledge that the patient’s life has changed, possibly forever.
At the same time, these patients and their loved ones also have a fierce determination to improve, and the conviction that they can find ways to improve quality of life through their own efforts.

In summary, good coping skills and a positive attitude can make a significant difference to your patient’s condition and to your and the patient’s quality of life.

Fibromyalgia and Chronic Fatigue Syndrome

Heart & Muscle Health

Fibromyalgia (FMS) and Chronic Fatigue Syndrome (CFS) are debilitating to their sufferers. The two syndromes are closely related in regards to extreme fatigue and overlapping symptoms and a growing number of people diagnosed with both. In FMS, muscle pain is greater than the fatigue, and in CFS, lack of energy is more significant than pain. FMS sufferers often report a physical injury or emotional trauma in their history, whereas CFS sufferers often report the illness developing after a viral infection such as flu or glandular fever (mononucleosis).

Symptoms of Fibromyalgia

Headaches & Migraines can be symptomatic of both fibromyalgia and chronic fatigue.

  • Chronic pain throughout the body (aching, burning, sharp and stabbing)
  • Extreme sensitivity to pain/touch/bright lights/smoke/food/allergens/chemicals
  • Fatigue – unable to perform normal daily activities during a flare-up. Unable to achieve restorative sleep
  • Stiffness of muscles causing pain, e.g. neck, back
  • Headaches/Migraines
  • Cognitive issues – difficulty concentrating, remembering, learning
  • Irritable Bowel Syndrome (chronic pain in stomach, extreme bloating, constipation or diarrhoea, constant feeling of fullness)
  • Anxiety
  • Depression
  • Painful periods for women
  • Unable to regulate body temperature extremes of hot and cold
  • Interstitial cystitis

Symptoms of Chronic Fatigue Syndrome:

  • Persistent physical exhaustion that limits even the most simple activities. Sometimes a sufferer will feel better and overdo it which leads to “payback” (a worse fatigue than previous but a day or two after the exertion).
  • Insomnia or unrefreshing sleep
  • Painful lymph nodes
  • Sore throat
  • Muscle pain, joint pain
  • Severe headaches and “brain fog”
  • Palpitations
  • Irritable Bowel Syndrome (IBS)
  • Anxiety
  • Depression
  • Issues with balance
  • Interstitial cystitis

What Causes the Fatigue?

More recent research suggests that there is a dysfunction in the mitochondria (the “powerhouses” of our cells, where energy is created) in both syndromes. Toxins that should be excreted by the kidneys build up in cells and tissues, reducing ATP (adenosine triphosphate) production. Since ATP is needed to provide energy to the muscles, without a constant supply of this, pain and fatigue are the results.

Using D-Ribose for Chronic Fatigue & Fibromyalgia

Take 1-3 grams up to 3 times a day (or for more severe conditions such as fibromyalgia or advanced heart disease, up to 5 grams 3 times daily with your doctor’s approval ). Initially, you may want to start on a higher dose until energy levels are restored and then continue at a lower maintenance dose.

If you are pregnant or breastfeeding or suffer from diabetes, please seek advice from your healthcare consultant before commencing on D-Ribose.

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Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways (and Where They Don’t)

Lately we’ve seen what appears to be a great deal of similarity in muscle issues in Chronic Fatigue Syndrome and Fibromyalgia. We know that Dr. Bateman and others believe ME/CFS and Fibromyalgia occur on a fatigue-pain continuum – that they are similar disorders that differ in the amount of fatigue and pain present. They both predominantly affect women, and similar medications are used in both.

Both Dr. Natelson and the Lights, however, have found differences in ME/CFS + FM vs ME/CFS patients alone, and Natelson argues that they’re quite different disorders.

ME/CFS and FM appear to be very similar but some important differences have shown up

Now a recent study demonstrates an important way that this is so.

Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis. The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders. Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.

A recent Fibromyalgia BDNF study seems to portray a very different disorder. It examined BDNF and a marker of central sensitization (S100B) in the blood of fifty-six FM patients and then determined if this correlated with pain pressure thresholds (the threshold at which pressure starts producing pain). The lower the pain threshold, the more pain a person is in. The study did not involve healthy controls and thus did not, strictly speaking, determine if BDNF levels were higher or lower than normal in FM.

Microglia Activation and Central Sensitization

Before we get to the findings, let’s look at S100B. S100B is such an intriguing factor that it’s surprising it hasn’t been studied before in FM or in any other pain disorders. S100B upregulates two key cytokines, IL-1b and TNF-a, both of which may be involved in FM and ME/CFS. It also activates the nuclear transcription factor which Maes proposes underlies the inflammatory milieu in ME/CFS and depression. It is also considered a surrogate for microglial activation.

Study Findings

This study found that increased BDNF and S100B levels were associated with increased pain sensitivity in FM. Other studies have found increased BDNF levels in FM as well. These FM findings contrast sharply with the decreased BDNF levels found in ME/CFS.

With regards to BDNF, ME/CFS looks more like multiple sclerosis than it does Fibromyalgia.

High Levels of Excitation vs Low Levels of Nerve Repair?

Is one disorder more excitatory?

While high levels of BDNF in FM look like they’re enhancing the activity of excitatory pain pathways in FM, low levels of BDNF in ME/CFS look like they may be impeding neuron repair and slowing down nerve transmission. Could FM be a disorder of brain excitation while ME/CFS is a disorder of brain loss and slowed functioning? Could it be that simple?

A quick look at the research findings in ME/CFS and Fibromyalgia indicate more overlaps than dissimilarities. Both are characterized by sympathetic nervous system activation, reduced aerobic capacity, increased lactate levels (in one place or another), reduced brain blood flow, decreased cortisol, and decreased grey matter in the brainstem.

Similarities between the ME/CFS and Fibromyalgia

  • Reduced heart rate variability – sympathetic nervous system activation – FM and ME/CFS
  • Reduced aerobic capacity – FM / Reduced aerobic capacity – ME/CFS
  • Increased lactate – muscles – FM / Problems with lactate metabolism – FM / Increased lactate brain – ME/CFS
  • Homocysteine increased in spinal fluid – both disorders
  • Reduced brain blood flow – FM / Reduced brain blood flow – ME/CFS
  • Neuropeptide Y increased – FM / Neuropeptide Y increased – ME/CFS
  • COMT Polymorphism Implicated– FM /COMT Polymorphism – ME/CFS
  • Reduced salivary awakening response cortisol – ME/CFS / FM
  • IL-6 increased – FM / IL-6 increased ME/CFS
  • Decreased grey matter – brainstem – FM / Decreased brain matter – brainstem – ME/CFS

Differences between the ME/CFS and Fibromyalgia

  • Substance P increased in FM / Reduced in ME/CFS
  • BDNF increased in FM / Reduced in ME/CFS
  • IL-8 increased FM / IL-8 decreased ME/CFS
  • Leptin reduced – FM / Leptin increased – ME/CFS

Central Sensitization – the Key?

It’s intriguing that the two major differences between the two disorders, increased substance P and BDNF in FM, are associated with central nervous system activation.

Given the high amount of pain and problems with stimulus overload, we’ve assumed ME/CFS is also a central sensitization disorder. Yet two markers associated with central sensitization that are elevated in FM, BDNF and substance P, are not elevated–or are actually lowered–in ME/CFS.

The excitatory neurotransmitter glutamate is also clearly increased in some parts of FM patients’ brains, but a CDC gene expression study suggested decreased glutamate uptake may be present in ME/CFS. At the Stanford Symposium Dr. Zinn described an ME/CFS brain characterized by substantial ‘slowing’. It was a brain that seemed to be more asleep than awake.

On the other hand, Jason has proposed that limbic kindling produces a kind of ‘seizure activity’ in parts of the brain in ME/CFS, and high levels of neuropeptide Y and reduced heart rate variability indicate the sympathetic nervous system is activated in both disorders. Klonopin (clonazepam), a nervous system inhibitor, is used in treating both disorders.

In the end it may be that, like the immune system in ME/CFS, parts of the brain are over- and under-activated in both disorders.

Increased levels of BDNF and S100B levels are associated with increased pain sensitivity in Fibromyalgia. They join a variety of other markers of central sensitization markers found in FM.

Differing levels of BDNF and substance P in Chronic Fatigue Syndrome and Fibromyalgia suggest that the two disorders differ in important ways. However, the two disorders share many more commonalities than differences. The central nervous system could be, however, where the two disorders diverge.

Pain is common in ME/CFS, but it appears that the pain is, at least in part, being produced in different ways than it is in Fibromyalgia.

Can I have both fibromyalgia and chronic fatigue syndrome?

Chronic fatigue syndrome is sometimes hard to distinguish from fibromyalgia. With chronic fatigue syndrome, the fatigue lasts more than six months with no other medical problem to explain it. And that interferes with daily activities at home and work.
A study from the American College of Rheumatology suggests that fibromyalgia and chronic fatigue syndrome (CFS) may even overlap in the same person. With both conditions, the fatigue and other symptoms seem to increase after periods of high stress or physical exertion.
Other studies have indicated that many people who were initially diagnosed as having chronic fatigue syndrome probably have fibromyalgia. After some of these people started the specific treatment for fibromyalgia, their symptoms lessened dramatically and their energy levels increased. Some common symptoms of chronic fatigue syndrome include:

  • relentless fatigue
  • memory and concentration problems
  • sore throat
  • swollen lymph nodes
  • muscle and joint pains
  • headaches
  • poor sleep that is not restful
  • exhaustion after exercise.

But there are important differences between the three conditions. For example, you must have musculoskeletal pain and at least 11 out of 18 specific bilateral tender spots (to assess this the doctor should use his thumb to press into the skin) if you are going to meet with the strict diagnostic criteria for FMS (there’s an illustration of where these tender points are on p107 of ‘Living with ME’). A significant minority of people with ME and CFS don’t experience pain (muscular, joint, or nerve) at all whereas others have pain which varies from mild to severe and persistent to intermittent. FMS also tends to come on gradually rather than follow an acute infective episode (although it can be precipitated by acute trauma such as an RTA). And unlike ME or CFS, there is an association between FMS and other rheumatic conditions such as lupus or rheumatoid arthritis, as well as inflammatory bowel disease.

As far as possible pathology is concerned, the latest thinking on FMS is that besides sleep disturbance being an important factor, the underlying cause may be an abnormality in the central nervous system related to pain processing as increased levels of a substance called P3 have been found in the cerebrospinal fluid of FMS patients. As with ME and CFS, areas of cerebral hypoperfusion can be shown using neuroimaging (i.e., SPECT scans).

For some people with FMS a rather more active approach to activity management seems to be helpful – but it doesn’t work for everyone. As with ME and CFS, a low dose of a sedating tricyclic drug (e.g., amitriptyline) is often prescribed for pain and sleep disturbance. In FMS there’s also some evidence to show that a flexible regime which combines amitriptyline and fluoxetine (both started separately at the lowest possible dose) can be beneficial.

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