“But the problem in diagnosing fibromyalgia is, there’s no single test of any kind that will demonstrate the syndrome. There’s no blood test, spinal fluid evaluation or anything like that. Every known test is normal.”

 — Lorne Label, a neurologist based in Thousand Oaks

Pain is subjective

Imagine feeling like you have the flu and it never goes away. You have been diagnosed with irritable bowel syndrome, which is a chronic, debilitating and incredibly painful condition. You can’t remember when you last had a good night’s sleep. You can’t remember which medical test you are scheduled to have that day. Your bones ache, and your hands and feet burn. Your head feels like it will explode when you open the blinds. No one has been able to figure out what caused your misery. And certain people close to you doubt that you are even ill, including your doctor.

0821 FeatThis is the world of a fibromyalgia patient. You can’t pin down when this constellation of debilitating symptoms began but you usually feel just awful. On a good day, you muster the courage to drag your stiff body out of bed and to the next medical appointment. On a bad day, you just stay in bed. You take a lot of pharmaceuticals, many of them quite potent, but no medicine really helps the pain and fatigue. And, yes, you are depressed.

You are a doctor’s nightmare because you have been through every test and procedure imaginable, and all of them come back normal. So you are either crazy or malingering. If you have been diagnosed with fibromyalgia syndrome, you are all too familiar with this chant. For those with fibromyalgia, a cure is highly unlikely. You are desperate just to find some meaningful treatment so that you can manage the condition. To make this situation even more difficult to bear, many of those in the medical profession do not believe there is such a thing as fibromyalgia syndrome.

However, according to the website WebMD, fibromyalgia syndrome is described as “widespread pain in the muscles and soft tissues above and below the waist and on both sides of the body. It is a syndrome, a set of symptoms that happen together but do not have a known cause. People with fibromyalgia feel pain and/or tenderness even when there is no injury or inflammation.”

“The problem about fibromyalgia is this: There are people that will say, ‘This person must have fibromyalgia because they hurt all the time and we can’t find anything else, so it must be fibromyalgia,’ ” said Thousand Oaks neurologist Lorne Label. “On the other hand, when you actually look at the definition of fibromyalgia for the American Academy of Rheumatology, they have some very clear criteria.”

“But the problem in diagnosing fibromyalgia is, there’s no single test of any kind that will demonstrate the syndrome,” Label said. “There’s no blood test, spinal fluid evaluation or anything like that. Every known test is normal.”

Dr. Robert Levin is the health officer/medical director of the Ventura County Department of Public Health. He said fibromyalgia is not an infectious disease, is not considered to be a reportable condition, and therefore, it is not possible to determine whether its presence is growing.

“From the popular media, it appears to be on the increase,” Levin said. “Remember, many, perhaps most, reputable doctors don’t believe it really exists.”

Patients who are in a world of pain beg to disagree. Carrie of Ventura said she has had symptoms for a very long time, despite getting a diagnosis just a few months ago. “People have no idea what an impact medical issues can have on your life,” Carrie said. “I remember 20-something years ago always being in so much pain. I kept going to an internist and he actually told me that my pain receptors were just greater than everyone else’s and, because of that, I was just going to have to learn how to deal with it.”

However, fibromyalgia syndrome was recognized by the American Medical Association as a medical cause of disability in 1987. In 1990, the American College of Rheumatology articulated criteria for the diagnosis of fibromyalgia, specifying 11 to 18 trigger points of extreme sensitivity. The criteria also require a history of widespread pain in all four quadrants of the body as a requisite for a fibromyalgia diagnosis.

A 2004 article entitled “Management of Fibromyalgia Syndrome,” published in the Journal of the American Medical Association (JAMA), reported, “At any one time, 10 percent to 12 percent of the general population report chronic generalized musculoskeletal pain that cannot be traced to a specific structural or inflammatory cause … (and) most often will fit the classification criteria of fibromyalgia syndrome.”

Fibromyalgia Inc.

0821 Feat2Despite pervasive denial of the existence of fibromyalgia syndrome within the medical community, there are some treatments that have often helped patients to manage the condition.

“The standard treatments have always been with people who are stiff and hurt, you’ve got to get them moving,” Label said. “You’ve got to get them into physical therapy. You’ve got to get them stretching every day.”

Label said the standard treatment, until recently, was prescribing antidepressants. “Almost without exception, we used to put them all on antidepressants of every kind,” he said. “Now they are using Lyrica and Cymbalta, which helps for pain and also happens to be an antidepressant. Those that can’t sleep because of their pain, Lyrica is sedating so that helps. But it doesn’t help everybody.”

Some patients are on an array of drugs. Carrie said she has been prescribed many different pharmaceuticals. “I was taking dicyclomine for the irritable bowel syndrome,” she said. “I was taking Imitrex for the migraines. I have taken Zoloft, an antidepressant, and now I take Lyrica. The doctor told me he might switch me from Lyrica to Neurontin, and has prescribed Soma to sleep at night.”

Another fibromyalgia patient, Denise of Fillmore, said she was diagnosed with the syndrome along with chronic fatigue syndrome. She has tried the anti-inflammatory route, although doctors say there is no identifiable inflammation associated with fibromyalgia.

“I had been able to take Vioxx, but then it was taken off the market,” Denise said. “I cannot take Celebrex because I am allergic to sulfa medications.”

Denise said she has been sent to a variety of specialists. “I’ve been referred for psychiatric care, which was a lot of fun. I was given an antidepressant,” Denise said. “I’ve also been referred to a cardiologist. And I have been to a neurologist.”

Desperation yields creative solutions

Denise said she has recently turned to other techniques for relief. She takes long, very hot showers for the muscle spasms. She gets vitamin B-12 injections. She joined a support group. And, more than anything else, she has turned to prayer and reading her Bible.

Dr. Geoffrey Drew of Thousand Oaks said he recommends a nutritional makeover. “I take a foundational approach stressing iron and minerals,” Drew said. “The patient should eat plenty of green, leafy vegetables and make sure they have an adequate amount of essential fatty acids in their diet, such as flaxseed oil, fish oil and olive oil.”

Drew also stresses that patients should get at least 45 minutes a day of exercise and include the dietary supplement glucosamine and chondroitin. “If they are overweight at all, they should lose weight,” Drew said.

Massage is another alternative therapy that can provide some temporary relief for patients. Melinda Rathburn, a massage therapist from Camarillo, said she first learned about fibromyalgia syndrome when she was still in massage school. “I had a few friends who were diagnosed with it,” Rathburn said. “This was really before they were considering it a syndrome.”

Rathburn said she tailors the massage for fibromyalgia clients because they react differently than other clients. “You have to get a lot more feedback from the client on the table. Many use the massage for relief, for pain management,” Rathburn said. “Others for mapping the trigger points. They may say it feels good, but the next day they are really achy and sore, like they overdid it at the gym.”

“Some use massage to help them sleep at night,” Rathburn said. “They hurt so much, they can’t get comfortable, they can’t get good quality sleep, which, of course, after a few nights of that, you ache anyway.”

Dr. Robin Bernhoft runs a fibromyalgia clinic in Ojai which offers a completely different approach, that of analysis of liver enzymes and then addressing any abnormalities. “I used to be a liver and pancreatic surgeon at the University of California, San Francisco, and the University of Washington, and I’m kind of liver-centric,” Bernhoft said.

Bernhoft said he has personally been laid low by disabling and mysterious symptoms, which he said was from a different yet equally controversial source. “I got really sick,” Bernhoft said. “I lost 35 pounds in four months. I didn’t buy any long-playing records. I thought I was going to die.”

“I was an absolute mess,” Bernhoft continued. “All these doctors that used to refer complicated cases to me had decided I had suddenly become acutely crazy. I experienced exactly what my patients experienced. I had multiple chemical sensitivity, which the National Institute of Health declared was real in 1999.”

The approach Bernhoft takes is to find the cause of the illness. “This is one of the problems in modern medicine. People tend to address symptoms and not causation,” Bernhoft said. “Usually it’s a matter of avoidance of what got them sick and removal of the stuff that got them sick, either through sauna and whatnot or chelation and/or both.”

The physical and psychological train wreck

0821 Feat3The earmark of fibromyalgia is the syndrome, a collection of seemingly unrelated chronic conditions that are difficult to treat. Along with those previously mentioned, another common issue associated with fibromyalgia is temporomandibular joint syndrome, or TMJ. This condition can cause severe headaches, as well as pain in the neck and back, which often makes chewing even soft food impossible. TMJ can also cause the jaw to lock up. There are two types of the condition, one that is usually caused by physical trauma, which throws a person‘s bite out of whack. The damage to the joint can be seen on an MRI. This is a mechanical problem which, to some extent, is reparable. The other type of TMJ is muscular, which is not visible on any test and is relatively resistant to treatment. Fibromyalgia often includes the latter.

Orthodontist and TMJ specialist Dr. Norman Nagel, who has offices in Thousand Oaks and Simi Valley, said his practice has included many fibrolyalgia patients over the years. “Fibromyalgia is one of those diffused, musculoskeletal pains which had different tender points all over the body. Because these people seem to be more susceptible as a group around their joints, you sometimes will see TMJ associated with that.”

Again, the issue of recovery is often different for those with fibromyalgia. “I know that, as a group, they don’t do as well, they don’t heal as well,” Nagel said. “My chances of a really good, successful case with a fibromyalgia patient are really not as good. If, after being treated with splints, physical therapy and medicine, they still have bite problems, I have to address those, knowing that when they are done, the fibromyalgia is still going to be there.”

One other alternative treatment for fibromyalgia is pet therapy. Anyone who spends a lot of time around his or her own animal is aware of the palliative effect of a pet’s affection.

Carrie has been a believer in pet therapy for a long time. “Horses have always been my passion and play a huge role in helping me cope,” Carrie said. “I know that when I get up, the horses are depending on me, they need me to take care of them. Once I get out to the barn and I start working with the horses, it literally takes my mind to a completely different place. I am able to get through whatever pain I am feeling that day.”

Could there be any more tests?

Another commonality of fibromyalgia patients is, they often see many doctors as they search for effective treatment. “Most of the patients I see have been to between 10 and 20 doctors who comprise eight or nine specialties,” Bernhoft said. “None of them have the faintest idea what to do with them.”

Carrie said she had a particularly bad experience with one neurologist. “He charged $10 to write a prescription. I was insane. You cannot believe the number of tests this man ordered,” Carrie said. “An MRI of the brain, an MRA of the brain, an MRI of the cervical spine — so much confusion — EEG, EMG, I had it done. So after spending thousands of dollars, I find out that I need B-6 and B-12, a vitamin.”

Carrie said she has been to a gynecologist who sent her to a cardiologist who sent her to a neurologist who sent her to a rheumatologist. “Three times, the rheumatologist and the lab have lost my blood,” Carrie said. “I have had so much blood taken out of me that I am surprised that I even have any more. You go to the phlebotomist and they take like 15 vials out of your arm,” Carrie said. “I was like, ‘Holy shit, leave me some!’ ”

And after all of the tests and labs and doctors, Carrie said she has not made any progress in relieving her pain. “So here I am, back at square one, needing to switch doctors.”

Why all the tests? “Doctors want to rule out other diseases,” Label said. “From the doctor’s standpoint, you want to make sure that you are not missing anything and, also, the patients are kind of expecting all these tests. They want to know why they hurt so bad. It is never just a clear-cut, easy patient who hurts a little bit in one place. There are all of these other layers much of the time. So doctors will throw up their hands and say, ‘Oh, yeah, whatever.’ ”

According to the fibromyalgia-symptoms.org website, there are many serious conditions that are mimicked by fibromyalgia and, therefore, need to be ruled out. A partial list includes Lyme disease; arthritis; hormonal imbalance; anemia; infection; muscle; bone; joint or nerve disease; cancerl; and hypothyroidism. There are others. The dizziness and memory problems, along with the pain and numbness, may point to multiple sclerosis. The headaches and blurred vision may indicate a brain tumor. The painful menstruation and dysmenorrhea (abnormally heavy bleeding) could suggest a gynecological cancer.

It is a Kafkaesque journey for many doctors and patients, all of which leaves patients in pain and doctors who are frustrated. The final insult for fibromyalgia patients is the existence of dishonest people looking to take advantage of the patients. “There are enough slimy people out there who promise the moon and sun and do all these unusual treatments because these people are very susceptible,” Label said. “These patients are looking for the magic bullet, and there are a lot of people out there who are willing to take their money for that magic bullet. Unfortunately, there is no magic bullet.”    

The fibromyalgia patients requested their real names not be used for the sake of privacy and the sensitivity related to the medical condition.