Frequently, individuals with fibromyalgia have to cope with loved ones who just don't understand fibromyalgia and what it entails. Other times, there are special individuals in your life who go the extra mile to truly understand the condition and who work with you to seek options. Belinda Preston is one of those lucky individuals. Her husband, Calvin, used the college requirement he had to learn more about fibromyalgia so that he could help his wife in her on-going efforts to overcome her symptoms. We think he did an admirable job, and he's agreed to let us share his research with you here. If you have challenging loved ones in your life, maybe you can share this paper with them.
Calvin M. Preston
Mr. Dean Huffaker
English 122
April 20, 2008
Final Paper
Understanding Fibromyalgia
In 1991, after three years of going to several doctors and undergoing many types of medical tests, my wife Belinda was diagnosed with fibromyalgia (FM). At that time fibromyalgia was rarely heard of, with many doctors not even recognizing it as a disease. Since there are no blood tests or x-rays that help in the diagnosis of fibromyalgia, many doctors initially believed the difficulties caused by fibromyalgia were psychological, or that patients had a form of masked depression or hypochodriasis (Bennett). Today fibromyalgia is generally accepted by most in the medical community as an actual disease, though it remains a very mysterious, complex, and disabling muscle and joint affliction that affects seven to ten million Americans (Bennett). Because fibromyalgia is multifaceted, its treatments vary widely. For those not familiar with fibromyalgia, or have difficulty understanding why someone they know suffers so much from it, I want to share my experience and what I’ve learned about this disease in my attempt to understand why it disables my wife to the extent it does. This report encompasses what fibromyalgia is and is not, what triggers the disease, risk factors, symptoms, and recommended treatments.
Primary fibromyalgia indications are widespread body pain, severe fatigue, and sleep disturbances/non-restorative sleep. Due to the similarities some experts believe that fibromyalgia and chronic fatigue syndrome (CFS) may actually be the same condition; Gulf War syndrome also overlaps with fibromyalgia and chronic fatigue syndrome (Mission and Brief Overview on the History of the Fibromyalgia Network). One of the main symptoms of fibromyalgia, chronic widespread body pain, often seems to rise in the muscles and can migrate from day to day and can be felt from head to toe (Bennett) (Fibromyalgia Syndrome). Fibromyalgia patients often ache all over; muscles may feel like they were “pulled” or overworked, and they may suffer from muscle twitches and burning sensations (Mission and Brief Overview on the History of the Fibromyalgia Network).
Another primary symptom of fibromyalgia is sleep disturbances/non-restorative sleep. Belinda suffers from muscle twitches, particularly at night. Most fibromyalgia patients suffer from a sleep disorder called the Alpha-EEG anomaly. Many fibromyalgia patients fall asleep without difficulty, but their deep level/stage four sleep is intermittent, and interrupted by bursts of brain activity similar to those one has while awake. Numerous fibromyalgia patients have sleep disorders in addition to the alpha-EEG; sleep apnea, upper airway resistance syndrome (UARS) teeth grinding, sporadic limb movement during sleep (jerking of arms and legs), and restless legs syndrome are common (Mission and Brief Overview on the History of the Fibromyalgia Network). Belinda’s sleep if often disturbed by restless leg syndrome and body twitches/jerks, and though she can sometimes sleep through them, they affect the quality of my sleep. When the twitches get to the point that she knows she is going to be up and down through the night, Belinda moves to the guest bedroom so as to not keep me up with her.
Some fibromyalgia patients may feel their pain originates in their joints. However, studies show that fibromyalgia patients do not have arthritis because the pain does not cause inflammation or damage to the joints, muscles or other tissues. Conversely, it is considered an arthritis-related condition, a rheumatic condition, because it impairs the joints and/or soft tissues and causes chronic pain. (Fibromyalgia (FMS), What is it?). Fibromyalgia patients are aware of their pain when resting, but it is more noticeable when they use their muscles, particularly during repetitive activities (Bennett).
Other common symptoms of fibromyalgia include cognitive or memory impairment (brain fog), morning stiffness, anxiety and depression, tension and migraine headaches, irritable bowel syndrome (IBS), irritable bladder syndrome, premenstrual tension syndrome, cold intolerance, restless leg syndrome, temporomandibular joint dysfunction syndrome (TMJ or TMD), teeth grinding, numbness and tingling sensations, dizziness or lightheadedness, and skin and chemical sensitivities. Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuation, stress, depression, anxiety, and overexertion may exacerbate fibromyalgia symptom flare-ups. Belinda is a classic fibromyalgia patient and suffers from almost all of the common symptoms, but her main problems are the primary symptoms of the disease - chronic pain in her muscles and joints, chronic fatigue, and sleep disturbances. In addition, we know that changes in the weather, infections of any sort, and allergies trigger her symptoms. If she has any type of infection, cold, or allergies, it will take her two to three times as long to heal as it would a normal person.
Fibromyalgia patients often experience great sensitivity to environmental factors such as loud noises, bright lights, odors, drugs, temperature changes, and chemicals (Fibromyalgia (FMS), What causes it?). Belinda has had such sensitivities since childhood, many years before she was diagnosed with fibromyalgia. As some of these sensitivities are also found in migraine patients, my wife (who had her first migraine headache around age eight) had always considered them migraine symptoms.
Who is at risk for fibromyalgia? Ninety percent of fibromyalgia suffers are women in the prime of their life who sometimes struggle for years before being correctly diagnosed. Symptoms usually appear between 20-55 years of age. Although prevalence increases with age, children may also be diagnosed with fibromyalgia. Individuals with established autoimmune disorders may be more prone to develop fibromyalgia. Studies indicate that up to 25 percent of people with systematic inflammatory disorders, such as lupus and rheumatoid arthritis also meet the criteria for fibromyalgia (Fibromyalgia (FMS), Who is at risk?).
There is no known cause for fibromyalgia. Some physicians believe that when a person who is genetically predisposed to the disease comes in contact with some environmental trigger, fibromyalgia develops. An acute injury, illness, surgery, or long-term psychological distress, e.g. childhood trauma, may trigger fibromyalgia (Fibromyalgia (FMS), What causes it?). Scientific research indicates that the central nervous system is involved in fibromyalgia. The nervous system in people with fibromyalgia does not function properly, and components of the body’s stress response can be responsible for symptoms. Substance P, a chemical that amplifies pain signals, is approximately three times higher in fibromyalgia patients. Serotonin, a brain chemical believed to modulate pain signals, has been found to be low, or poorly processed in fibromyalgia patients (Fibromyalgia (FMS), What causes it?). Anti-depressants or anti-anxiety drugs, such as Xanax, Wellbutrin, Paxil, Zoloft, and Prozac, are often prescribed for depression. Selective serotonin reuptake inhibitors, Paxil, Zoloft, and Prozac, which increase the amount of serotonin in your brain, are often prescribed in combination with tricyclic antidepressants, as SSRIs taken alone may interfere with sleep. Muscle relaxants such as Flexeril have proved helpful in the treatment of fibromyalgia, and are often prescribed to help ease muscle tension and improve sleep (Fibromyalgia (FMS), Treatment options). Belinda takes Prozac daily for depression and other fibromyalgia symptoms. Her depression is not as severe as it may be in others; she maintains a positive attitude about her disease and its limitations. However, before she began taking Prozac her pain level was unmanageable much of the time, and she went through a period where she could barely walk due to the pain in her leg muscles and joints. At one point she was even hospitalized for a week because it was so difficult for her to walk. The Prozac literally got her back on her feet and walking again, and improved several of her other functions. Psychological disorders are no longer believed to be the cause of fibromyalgia, but the anxiety and depression that can be caused by chronic pain and fatigue may intensify symptoms, creating a cycle of pain, fatigue, and anxiety, leading to more pain, etc. (Fibromyalgia (FMS), What causes it?).
Some fibromyalgia patients also have abnormalities in the hypothalamic-pituitary-adrenal axis (HPA axis), the brain and hormone interactions that regulate virtually all physiologic activities, including the stress response. Other fibromyalgia patients have low levels of growth hormone, which may contribute to postexertional muscle pain (Fibromyalgia (FMS), What causes it?) When treating pain, drugs commonly used to treat musculoskeletal pain such as aspirin, non-steroidals, and cortisone are generally not effective (Bennett). Belinda found this to be the case with these types of medications. Patients are often prescribed opioid analgesics, such as codeine, hydrocodone, oxycodone, morphine, and methadone (for severely afflicted patients), but have undesirable side effects such as nausea, constipation, itching, mental blurring, and addiction. Alternatives to the foregoing opioid analgesics are weaker opiates (Ultram, Ultacet), which have a lower potential for addiction. Other treatments for pain include trigger point injections (injecting a trigger point with a local anesthetic), heat, massage, gentle stretching, and acupuncture. Certain daily activities, repetitive use of muscles, or prolonged tensing of a muscle can make pain worse. Fibromyalgia patients are advised to note these activities, and modify or eliminate them whenever possible. Pacing of activities and scheduled breaks are important for fibromyalgia patients. Some fibromyalgia patients may find pain relief from therapies such as massage, movement therapies (Yoga, Pilates), chiropractic manipulation, and acupuncture. Belinda practices Hatha Yoga as part of her pain management therapy.
As previously noted it can be difficult to diagnose fibromyalgia; there are no blood tests or x-rays to assist in the diagnosis. People with fibromyalgia can and often do look healthy and have no outward signs of pain or fatigue. Diagnosis may also be complicated by fibromyalgia mimicking many other diseases which may occur concurrently with it, such as arthritis, multiple sclerosis, lupus, lyme disease, endocrine disorders (e.g., Addison’s disease, Cushing’s syndrome) hypothyroidism, polymyalgia rheumatica, hepatitis C, sleep apnea, parvovirus infection, and chronic fatigue syndrome. A diagnosis of fibromyalgia is frequently dependent on eliminating other diseases, and a physician’s diagnosis of fibromyalgia may be based on the finding of tender areas in specific areas of muscle known as “tender points”. In 1990, The American College of Rheumatology developed the following criteria for diagnosing fibromyalgia: A history of widespread pain (pain on both sides of the body and above and below the waist) that is present for at least three months, and pain in at least 11 of 18 tender point sites. However, these criteria were developed to help researchers identify patients for clinical trials and not for diagnosing fibromyalgia in individuals. At least half of the individuals who have the medical diagnosis of fibromyalgia will not meet this classification (Fibromyalgia (FMS). How is it diagnosed?). The diagnostic process may take years. In Belinda’s case it took approximately three years of going to several doctors and undergoing many medical tests. During this time one doctor had her enroll in a 30-day outpatient pain clinic, which was of great benefit to her. The clinic taught her techniques to help deal with stress, but more importantly she learned techniques to help her cope with and reduce her pain level.
Since there is no known cure for fibromyalgia, treatment basically consists of mitigating as many of the symptoms as possible, and making the patient as comfortable as possible. As with any chronic disease, medication alone is not the most effective way to treat fibromyalgia (What’s New). Fibromyalgia sufferers do not share all the same symptoms, and they do not respond to the same medications (A Guide to Fibromyalgia Medications). Treatment may include more than one medication, gentle exercise, and cognitive therapy (What’s New). As a consequence of muscle pain, many fibromyalgia patients severely limit their activities and exercise routines. However, regular exercise is essential for all fibromyalgia patients. They are advised to avoid impact-loading exertion such as jogging, basketball, and aerobics. Instead of these type of activities, fibromyalgia patients are encouraged to walk, use a stationary bicycle, or have pool therapy for 20 minutes three times a week (Bennett). Belinda has problems with almost any kind of physical activity. She can and does like to walk, though she can only do so for short periods at a time. Walking for long periods of time triggers pain in her leg muscles.
According to the Fibromyalgia Network, fatigue can be “mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as “brain fatigue” in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.” (Mission and Brief Overview on the History of the Fibromyalgia Network). Belinda often suffers from brain fog or as she calls it “brain dyslexia.” She gets so tired that it affects her thinking and speaking abilities. When speaking she often inverts the order of her words or she simply cannot come up with a very simple word that she usually knows and can speak. Any type of physical activity may increase her pain level, so she schedules her housework and activities very carefully. She has to limit her amount of daily activity, and takes breaks often during the day. Before her illness, my wife was an immaculate housekeeper. We have both learned to live with a house that is sometimes not quite the way we want it to be. We often choose to let things go until a later and better time to be dealt with. I don’t help around the house as much as I might because of my busy schedule, plus Belinda prefers to do many of her own household chores to ensure they get done they way she wants them. However, I try to help out in other ways. For example, grocery shopping takes a heavy toll on her. The walking involved, her inability to lift more than a few pounds, and the fact that she cannot always control the movement of her hands combine to make this a very difficult task. Consequently, I do all of our grocery shopping.
The prognosis for fibromyalgia is not very good, as there is no known cure for this disease. Musculoskeletal pain and fatigue are chronic problems that wax and wane in intensity and continue throughout a person’s lifetime. Fibromyalgia discomfort can be so severe that it may significantly limit a patient’s ability to lead a full life, perform everyday tasks, and leave them unable to work in their chosen profession (Fibromyalgia Syndrome). Some patients are so severely affected that they need disability assistance. However, some physicians are still reluctant to declare fibromyalgia patients disabled. Most fibromyalgia patients are initially turned down by Social Security Administration at the first review. This was the case with Belinda, but eventually she was awarded social security disability. Fibromyalgia isn’t a progressive disease and it is never fatal (Fibromyalgia (FMS), What is it?). The varying level of pain and fatigue often lead to a reduced quality of life, but there is no evidence it affects lifespan (Bennett). With a treatment plan that incorporates exercise, rest, stress relief, coping skills, and medications, fibromyalgia patients can live happy, productive lives (Fibromyalgia (FMS), What is it?).
In 2007 the FDA approved Lyrica (Pregabalin) as the first drug specifically for treating the symptoms of fibromyalgia. Belinda was prescribed Lyrica in February 2008, but unfortunately this drug did not work for her. She started off on a low dose with the plan to adjust her dosage higher as she acclimated to it. For the first couple of days we were very hopeful, her pain level decreased and she felt really good. However, after three days on Lyrica she felt so high that she could not function. During the middle of the third night her body started jerking wildly as she slept, and later she got up and was wandering around the house with no idea of what was going on. At that point we decided this medication was not for her. Another medication, Neurontin, has not been approved by the FDA for fibromyalgia treatment, but some fibromyalgia patients are finding it helpful with symptoms, and we will try it in the near future. The outlook for fibromyalgia patients is improving with several medications being developed specifically for this disease.
In conclusion, I hope that this report is of some use to its readers. Please remember, though, there is no one treatment for fibromyalgia. What works for Belinda may not work at all for other fibromyalgia patients. My wife and I live one day at a time and try not to focus on her fibromyalgia. It helps that she has such a positive attitude and concentrates on what she can do, rather than what she cannot do on a particular day.
Bibliography/Works Cited and Resources
"A Guide To Fibromyalgia Medications." National Fibromyalgia Research Association (NFRA). Jan. 2008. National Fibromyalgia Research Association (NFRA). 22 Feb 2008 <http://www.nfra.net/fibromyalgia_meds.htm>.
"About WebMD." WebMD 25 Feb 2008 <http://www.webmd.com/policies/default.htm>.
"American College of Rheumatology (ACR) 1990 Fibromyalgia Diagnostic Criteria." National Fibromyalgia Research Association (NFRA). 1990. National Fibromyalgia Research Association (NFRA). 22 Feb 2008 <http://www.nfra.net/Diagnost.htm#>.
Bennett, Robert. "An Overview for the Newly Diagnosed Patient." National Fibromyalgia Association (NFA). 2008. National Fibromyalgia Association (NFA). 21 Feb 2008 <http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_overview>.
Berenson, Alex. "Drug Approved. Is Disease Real?" nytimes.com 14 Jan 2008 28 Jan 2008 <http://query.nytimes.com/gst/fullpage.html?res=9F0DEEDA103FF937A25752C0 A96E9C8B63&scp=1&sq=Drug+Approved.++Is+Disease+Real%3F&st=nyt>.
"Fibromyalgia Diagnosis." Fibromyalgia Network 25 Feb 2008 <http://www.fmnetnews.com/basics-criteria.php>.
"Fibromyalgia Fact Sheet." National Fibromyalgia Association (NFA). 2008. National
Fibromyalgia Association (NFA). 21 Feb 2008 <http://www.fmaware.org/site/PageServer?pagename=media_factSheets>.
"Fibromyalgia (FMS), How is it diagnosed?." http://www.arthritis.org/. 2007. Arthritis Foundation. 22 Feb 2008
<http://www.arthritis.org/disease-center.php?id=10&df=diagnosed>.
"Fibromyalgia (FMS), Treatment options." http://www.arthritis.org/. 2007. Arthritis Foundation. 22 Feb 2008
<http://www.arthritis.org/disease-center.php?disease_id=10&df=treatments>.
"Fibromyalgia (FMS), What causes it?" http://www.arthritis.org/. 2007. Arthritis Foundation. 22 Feb 2008 <http://www.arthritis.org/disease-center.php?disease_id=10&df=causes>.
"Fibromyalgia (FMS), What is it?" http://www.arthritis.org/. 2007. Arthritis Foundation. 22 Feb 2008 <http://www.arthritis.org/disease-center.php?disease_id=10>.
"Fibromyalgia (FMS), Who is at risk?" http://www.arthritis.org/. 2007. Arthritis Foundation. 22 Feb 2008 <http://www.arthritis.org/disease-center.php?disease_id=10&df=whos_at_risk>.
"Fibromyalgia In-Depth Report." nytimes.com 17 Dec 2007 25 Feb 2008 <http://health.nytimes.com/health/guides/disease/fibromyalgia/print.html>.
"Fibromyalgia Overlaps with Other Conditions." Fibromyalgia Network 25 Feb 2008 <http://www.fmnetnews.com/basics-overlap.php>.
"Fibromyalgia Symptoms." Fibromyalgia Network 25 Feb 2008 <http://www.fmnetnews.com/basics- symptoms.php>.
"Fibromyalgia Syndrome." National Fibromyalgia Research Association (NFRA). 2007. National Fibromyalgia Research Association (NFRA). 22 Feb 2008 <http://www.nfra.net/default.htm>.
"Fibromyalgia Treatment." Fibromyalgia Network 25 Feb 2008 <http://www.fmnetnews.com/basics-treatment.php>.
"Fibromyalgia Questions and Answers." Fibromyalgia Network 25 Feb 2008 <http://www.fmnetnews.com/basics- faqs.php>.
Guthrie, Catherine. "The 10 Biggest Medical Breakthroughs." Time.com 13 Dec 2007 28 Jan 2008 <http://www.time.com/time/magazine/article/0,9171,1694474,00.html>.
"Introduction to NFRA." National Fibromyalgia Research Association (NFRA). 2007. National Fibromyalgia Research Association (NFRA). 22 Feb 2008 <http://www.nfra.net/IntrNfra.htm>.
"Latest News, Doctors Respond to New York Times Article ." Fibromyalgia Network. 22 Jan 2008. Fibromyalgia Network. 28 Jan 2008
<http://www.fmnetnews.com/basics-news.php#DrsRespond>.
"Mission and Brief Overview on the History of the Fibromyalgia Network." Fibromyalgia Network 25 Feb 2008 <http://www.fmnetnews.com/about-philosophy.php>.
"What You Need to Know About Fibromyalgia." Cleveland Clinic 27Oct 2006 25 Feb 2008 <http://www.clevelandclinic.org/arthritis/treat/facts/fibromyalgia.htm>.
"What's New." National Fibromyalgia Research Association (NFRA). 2008. National Fibromyalgia Research Association (NFRA). 22 Feb 2008 <http://www.nfra.net/fibro_jan_2008.htm>.
