Around 10 million people in the United States live with fibromyalgia, a long-term condition that causes pain all over the body. It affects around 3–6% of the global population, 75–90% of whom are women.
People with fibromyalgia describe debilitating generalized muscular pain throughout the body, chronic tiredness due to the inability to sleep properly, headaches, tingling in the hands and feet, and itchiness. They often have problems thinking clearly as well as short-term memory loss — known as “fibro fog” — which sufferers describe as experiencing everything through a veil or having a bad head cold.
Physicians use the term “dyscognition” to explain the battle patients have with processing information, which can lead to confusion, forgetfulness, distraction, short-term memory loss, and difficulty carrying on conversations. This is not due to old age, since most people who are diagnosed with fibromyalgia are in their 20s, and in rare cases, children also develop the disease. Some days are worse than others due to fluctuations in the physical, emotional, or environmental stress placed on the body.
Fibromyalgia symptoms are similar to other disorders like chronic fatigue syndrome, interstitial cystitis (bladder infection), myofascial pain syndrome (from repetitive motions), various chemical sensitivities, and temporomandibular joint dysfunction (a jaw disorder), among others. Due to the number of symptoms and the disorders that can cause them, it is difficult for doctors to diagnose fibromyalgia and follow up with appropriate treatment.
Living with fibromyalgia
Lucy King has made a great effort to share her experience of living with fibromyalgia in the hope that others will be more understanding of people with the condition. Only a person who knows someone with fibromyalgia or has the condition will truly understand the intense effort needed to discuss it. “The anxiety I get when knowing I have to talk to anyone who isn’t my husband or parents is a massive energy drainer,” says King. “I have panic attacks at just the thought of communicating with anyone else and trying to follow a conversation.”
“Fibromyalgia is a secondary condition that is always triggered by something else,” she says, explaining how she suffers from irritable bowel syndrome, Type 1 diabetes, and has struggled to put on weight for the last 15 years. Looking back to December 2014, when her condition worsened, King also sees a link with increased stress. “I was planning our wedding while at the same time my parents were in the process of splitting up,” she says. In addition, a tooth extraction resulted in a dry socket with excruciating pain and many visits to the dentist over a three-month period. All this occurred while she was working full-time. She became fatigued, experienced pains all over her body, and started losing weight dramatically.
By April 2015, King was struggling to hold down her job and was diagnosed with trigeminal neuralgia — severe and sudden facial pain. At this stage of her diagnosis, her focus was on making it to her wedding day, but after the wedding, her health didn’t improve. A rheumatologist diagnosed fibromyalgia in November 2015.
The central sensitization theory
The causes and effects of fibromyalgia are thought to be bidirectional. People with the condition feel pain more intensely, and although it is not completely understood, scientists think that it begins with a tightening in the deep tissues of the muscles and joints, leading to poor sleep. Without the necessary time to repair themselves, muscles are put under strain, so they send signals to the central nervous system that they need repair time, which they don’t get. The signals pulsing back and forth between the central nervous system and the muscles result in a heightened sensitivity to pain, and this often links to other conditions.
Research by Dr. Lindsay Kindler and associates at the University of Florida’s Center for Comprehensive Pain Research examined the mounting pathophysiologic evidence that could link fibromyalgia with other chronic disorders. They concluded that psychological factors, environmental triggers, genetics, and dysfunctional pain processing formed a complex web.
For example, studies conducted with twins suggest that 50% of the risk of fibromyalgia and other related disorders is genetic, while the other 50% is environmental. People with fibromyalgia are also eight times more likely to have a sibling, parent, or child with the same condition compared to people who have no genetic history of fibromyalgia.
In terms of dysfunctional pain processing, when neuroimaging was used to examine the brains of patients with fibromyalgia, it was found that they have greater activation than patients who do not have the condition when given the same stimulus. This indicates a physiological difference in how symptoms of pain are processed in the brains of fibromyalgia patients.
Understanding the interplay between these various elements of fibromyalgia is critical to addressing why certain individuals develop abnormal pain processing characteristics that result in chronic pain conditions.
Medications to ease pain
Commonly prescribed medications for fibromyalgia include antidepressants (amitriptyline, nortriptyline, duloxetine, milnacipran), muscle relaxants (cyclobenzaprine), and anticonvulsants (pregabalin, gabapentin). What works for one person may not work for someone else, so doctors sometimes try different medicines or a combination of them.
A new treatment is also in the works. IMC-1, which is being developed by Innovative Med Concepts, combines two drugs that target the herpes virus. Together, they appear to be effective against fibromyalgia. In 2016, the U.S. Food and Drug Administration fast-tracked the medication’s development. A phase 2 trial to check the hypotheses that chronic herpes simplex virus type 1 may be one of the underlying causes of fibromyalgia is now complete, and a phase 3 trial is expected to begin later this year.
Deficiencies in vitamins B12 and D are common among fibromyalgia patients. King, for example, had a deficiency in B12 and dangerously low levels of D. Doctors often suggest B12 injections and D supplements. There are two types of vitamin B12, and Dr. Paul Cheney of the Cheney Clinic in North Carolina suggests daily injections of hydroxycobalamin. The high dosage acts as a detoxifier, can assist with sleep, and provides some pain relief.
Low magnesium levels are also common among fibromyalgia sufferers, but it was found that supplements were not targeting the brain, where magnesium was most needed. MIT-founded clinical-stage biopharmaceutical company Neurocentria, Inc., has developed magnesium-L-threonate under the brand name MMFS-01. L-threonate sends magnesium into the cerebrospinal fluids surrounding the brain from where it reaches the neurons. The increased magnesium levels result in an enhancement of synaptic density and plasticity, leading to better cognitive performance.
A balanced approach
Dr. Mark Pellegrino of Ohio Pain and Rehabilitation Specialists, the author of 13 books on fibromyalgia, was diagnosed with the condition at age 28 when he was a medical resident. He believes in a balanced approach to the condition, which includes medication, supplements, and physical therapies. Pellegrino has developed a system he calls “fibronomics” — a way of controlling movements to get maximum use from the limbs without inducing undue pain.
Cheney, who is a pioneering clinical researcher in the field of chronic fatigue syndrome, advises people to focus their energy elsewhere rather than on their disease. When people become absorbed in activities like writing, music, and art, they shift the focus of their energy into another channel rather than concentrating on the anxiety and pain of their illness.
Oregon Health and Science University’s Dr. James Carson has worked extensively with people suffering from fibromyalgia, multiple sclerosis, and chronic back pain. In a trial of the “Yoga of Awareness” program for the management of fibromyalgia, he found that women who had been assigned to the once-weekly two-hour yoga program and practiced the poses at home for 20 to 40 minutes daily for eight weeks showed significant improvements against standardized measures of fibromyalgia pain and functioning.
Their mood, acceptance of themselves, and perception of pain and fatigue had all improved, and they had developed coping strategies. Carson ascribes the reported 31% improvement in symptoms to a relaxation response induced by yoga breathing techniques that could alter the transmission of pain signals.
Exercise can help
Many people with fibromyalgia understandably avoid exercise. Studies have shown that exercise options for fibromyalgia patients are limited functionally, due to reduced muscle mass and the large variety of symptom triggers an individual may have. Programs should be low impact and aerobic, focusing on the individual’s capabilities.
Experts often recommend closed kinetic chain exercises — physical exercises performed where the hand or foot is fixed in space and doesn’t move — because a stationary object provides support. Patients should start with short, gentle workouts and increase the duration and regularity as their fitness improves.
If done correctly, exercise can prove highly beneficial in the management of fibromyalgia pain. One study on the effects of physical activity on fibromyalgia found that those who had previously engaged in minimal activity had improvement in their perceived physical function and pain. The group was tasked with working toward 30 minutes of physical activity for five to seven days per week over a 12-week period. The researchers reported that participants had managed a 54% increase in their average daily step count and an 18% improvement in self-reported functioning, and they reduced their pain by 35%.
However, when the same research team conducted a follow-up study six and 12 months later, they found the initial success of the intervention was not sustained over time. People were not keeping up with the program on their own for various reasons, a predicament King understands all too well. “I have recently been diagnosed with severe osteoporosis and ordered to do zero exercise for the risk of fracture,” she explains. “More than anything, I can’t get out every day to attend the therapy center without it doing me more harm by overdoing it.”
Alternative therapies can help, but so far, studies on their efficacy have been limited. Any relief is welcome, however, when pain is generalized, constant, and debilitating, as is often the case with fibromyalgia. King has tried hyperbaric oxygen therapy, reiki, acupuncture, reflexology, massage, meditation, hydrotherapy, and vaping cannabidiol (CBD), and they have helped, but the cost has proven prohibitive.
Sound therapy is one promising alternative. Studies have found that music and low frequency sounds can reduce the pain experienced by fibromyalgia patients. Kinesiologist and sound therapist Anikiko Neradilkova says while sometimes a client’s pain is so intense that headphones cannot be tolerated, speakers set at a very low intensity still provide benefits. “There is ongoing research into which frequencies most benefit different chronic symptoms,” Neradilkova explains, “and new technology is being created that could drive sound and frequencies deeper into the body for healing.” Fibromyalgia patients should watch for further developments.
And King offers her own words of wisdom. “Don’t be hard on yourself. Rest when you need to, and don’t be too sad when you find that ‘friends’ fall by the wayside. The important people in your life will still be there for you through it all. Lastly, you are not alone. Facebook is amazing for support groups. Hang in there.”