Uncovering the Mysteries of Fibromyalgia
Imagine a disease where you’re in constant pain for no apparent reason. You’re tired all the time, yet it’s difficult to fall asleep, and even if you manage to sleep several hours you may still wake up exhausted. You also experience so much brain fog that even basic tasks seem impossible to do. Worst of all, doctors say it’s all your head.
It’s a scenario familiar to many fibromyalgia sufferers. Today, fibromyalgia is recognized as one of the most common chronic pain conditions, affecting as much as six percent of the U.S. population. But not long ago, doctors classified it as a mental disorder, because conventional tests couldn’t provide evidence for the long term pain patients experienced.
Awareness and acceptance of fibromyalgia has grown tremendously over the last few decades. Most doctors now agree that it’s a real disease and that those who have it endure real pain. However, both the cause and cure remain unclear.
Fibromyalgia is a disease of many mysteries. It often runs in families, but the predisposing genes have yet to be identified. It impacts all ages and races, but women get it far more than men (up to 90 percent of fibromyalgia patients are female). Another curious feature: the onset of fibromyalgia often follows a traumatic event.
One persistent problem is how to spot it. It’s estimated that it takes an average of five years for a fibromyalgia patient to receive an accurate diagnosis.
New Breakthrough Test
A new development promises to lift this part of the veil. Researchers at the Ohio State University’s Wexner Medical Center have recently created a blood test that reliably identifies a notoriously misunderstood syndrome.
Dr. Kevin Hackshaw, lead author of the study and associate professor of rheumatology at Ohio State, says developing a fibromyalgia blood test is important because it will allow patients a much quicker and less expensive route to appropriate treatment.
“A blood test would save numerous health care dollars,” Hackshaw said. “It would also help to better direct therapy of physicians who might be inappropriately treating these chronic pain patients with narcotics, when in fact what they need are medications that are aimed more at treating nervous system signals instead.”
Hackshaw’s blood test is not the first lab test designed to identify fibromyalgia. There is already one which uses spinal fluid, because researchers have found that fibromyalgia patients have three to four times the normal amount of certain nerve transmitters. Another test uses magnetic resonance imaging to identify brain abnormalities specific to the disease.
But Hackshaw says the problem with these tests is that they’re either too expensive or too invasive for general use. With a little bit of blood, however, doctors can now accurately confirm fibromyalgia.
“The amount of blood we use for this test is less than one milliliter, and our study shows that it is highly reproducible,” he said.
Aching for Relief
Diagnosis is a crucial step, but it’s just the first piece of a grand fibromyalgia puzzle. Once patients know what they’ve got, doctors can prescribe drugs approved to treat it. But the best these prescriptions can do is manage symptoms. For some, drug treatment provides little to no relief.
This disheartening dead end is something Leah McCullough is intimately familiar with. Her fibromyalgia began in her early 20s, when McCullough was in the army. She was tired all the time, and her back always hurt. Her pain and fatigue continued to worsen, but McCullough didn’t find out what was wrong until seven years after she developed symptoms.
“I had all kind of tests done, but they couldn’t find anything wrong with me,” McCullough said. “I was told things like, ‘You have MS,’ or ‘You’re just constipated,’ or ‘We see some stuff on x-rays, but this is really all in your head.”’
McCullough was thrilled when doctors finally put a name to her problem, because it meant she wasn’t crazy. But that was just the beginning. In her quest to feel better, McCullough tried over 30 prescription medications, but her symptoms barely improved.
After 20 years of pain, depression, and fatigue with no end in sight, McCullough was forced to face a sobering reality: the rest of her life might be nothing but constant suffering.
“When I turned 40 I was staring down the barrel of some seriously horrible outcomes. I was in an incredible amount of pain, and taking narcotics. I couldn’t sleep, I couldn’t work, and I couldn’t function. I couldn’t have a baby, and I wasn’t a very good wife,” she said. “It was very stressful on our marriage. We went from two incomes to one overnight, and we nearly went bankrupt from all the medical bills.”
McCullough regularly took 12 prescriptions to manage her symptoms, three of which were just for pain. One drug was called Rohypnol, also known as the “date rape drug,” or roofies. “I couldn’t sleep for years, so they had to chemically knock me out,” she said. “Even then I had to wake up in the middle of the night and take another dose in order to sleep.”
Desperate for either a cure or death, McCullough turned to prayer. Miraculously, it worked.
“Meditating and praying is not what recovered me, but I think it made me become aware of the possibilities,” she said. “I met a lady who said she had recovered from fibromyalgia. It was the first time I ever heard that, so I started talking to her and she was seeing a holistic practitioner. I started working with her, and within three weeks of doing what she said, I felt so much better.”
In the months that followed, McCullough was able to get off all her prescriptions, and her symptoms finally began to fade. By the time McCullough turned 41, she was pain-free and pregnant.
“I didn’t have postpartum depression afterwards, even though major depression was one of my diagnoses,” she said. “I’ve been able to be a really good mom and a really good wife and I got my whole life back.”
It will be 11 years this June since McCullough became symptom-free, and her mission ever since has been to share her journey and protocol with people who still struggle with the disease so that they don’t have to endure the years of agony she had to. Details can be found in her book “Freedom from Fibromyalgia: Seven Steps to Complete Recovery.”
“I’m working really hard to let people know that it’s absolutely possible to completely recover from fibromyalgia and I’m doing everything I can to get the word out,” she said.
It’s hard to appreciate the influence of chronic pain until you’ve lived with it.
The typical pain we experience might be unpleasant, but it’s usually over quickly. When pain wears on for weeks, months, or years, it can feel like a cruel, soul-crushing specter that haunts everything you do.
Fibromyalgia means muscle pain. It is different than other chronic pain conditions, like arthritis, and it’s not an autoimmune disease like multiple sclerosis. According to Hackshaw, fibromyalgia is best characterized as “pain amplification syndrome.”
“It’s what we call neuropathic pain,” he said. “Patients with fibromyalgia get increased signals of pain because of abnormalities in the nervous system.”
Because of how the disease manifests, conventional strategies to treat fibromyalgia target the nervous system. These include antidepressants, serotonin, and norepinephrine reuptake inhibitors, and drugs that moderate the calcium and sodium flow across nerve endings.
“All of these agents work in some way to change the concentration of these key neurochemicals that are involved in pain sensation in the brain,” Hackshaw said.
But there are also other treatment strategies outside the realm of conventional medicine. For example, one common view found among many holistic-minded practitioners is that fibromyalgia symptoms actually stem from a body overburdened with toxicity and digestive problems.
Some conventional doctors may still scoff at these ideas. But for McCullough and others, lasting relief has come from things like taking probiotics, eating a clean, nutrient-dense diet, and gently detoxifying their bodies.
“Everybody I talk to with fibromyalgia, even if they are asymptomatic, their digestive systems are in trouble. If they are symptomatic, their digestive system is damaged,” McCullough said.
Several studies support McCullough’s observations, and so do ancient forms of medicine. As Hippocrates stated, “All disease begins in the gut.”
However, Hippocrates never encountered the chemical toxicity we see today. Fortunately, our bodies generally do a pretty good job filtering out these poisons from our air, food, and water so that we don’t get sick. However, it’s believed that the bodies of fibromyalgia patients can’t detoxify as effectively as they should, and their pain, depression, and sleep disturbance are all the result of toxins lodged in their tissues.
The rise of all chronic diseases over the last century has been linked to the accumulation of numerous environmental and nutritional factors. But some fibromyalgia suffers say they can identify the specific toxic source that pushed them over the edge.
For example, a growing number of people diagnosed with fibromyalgia connect the onset of their symptoms with taking fluoroquinolone antibiotics. The best-known drug from this class is Cipro (ciprofloxacin), so the fibromyalgia patients in this group refer to their disease as “Cipro-myalgia.”
Fluoroquinolones are necessary when other antibiotics fail, but some doctors prescribe them before trying a less powerful drug. However, in 2016 the U.S. Food and Drug Administration warned that the side effects of these medications outweighed the benefits when it comes to simple infections.
Fluoroquinolone toxicity advocate and Cipro-myalgia sufferer Mark Girard believes he has paid a high price for doctors administering these powerful drugs irresponsibly.
“Fluoroquinolones are incredibly toxic yet doctors hand them out like candy, and worse yet they double the dose or triple the duration on a whim as if they were traditional antibiotics,” Girard said. “They are also prescribing them in conjunction with other drugs that cause toxic reactions in our bodies. My doctors did all three, and I have suffered horribly with a wide variety of health problems from head to toe.”
Moving Toward Recovery
One place where conventional and holistic perspectives merge in regards to fibromyalgia is the importance of exercise.
Hackshaw stresses that medications are not the most important part of fibromyalgia treatment. According to him, the key to keeping symptoms in check is movement, and he says many patients who exercise regularly can avoid taking prescriptions altogether.
“Exercise is number one in terms of treatment,” he said. “We know a regular exercise program can increase some of those key neural chemicals that are abnormal in fibromyalgia and can help to precipitate or enhance the pain prototype that fibromyalgia patients experience.”
Exercise can also help the body detoxify by increasing blood circulation and flushing out the lymphatic system.
But even though both sides agree on this strategy, it can still be hard to convince someone to exercise when they are tired and hurting all over. That’s why McCullough advises people who are still in pain to wait until they feel better to do anything too strenuous.
“A healthy body wants to move,” she said. “It’s part of how we’re designed. But if you’re overloaded with toxins, and you start to detoxify without a way to get the toxins out, then you’re going to get sicker.”
With time, McCullough believes exercise can become a big part of the healing process because it allows people to finally trust the body that had failed them for so long.
“Their body has just been this painful meat suit that their soul is trapped in. When it starts to feel better, they have to learn to partner with it again. It’s very cathartic,” she said.