Struggling For A Better Life

With Fibromyalgia And Chronic Fatigue

By Kendra Bobowick

Fibromyalgia and chronic fatigue sufferer Margot Saraceno wants some professional answers to problems that have plagued her since 1991.

In her experience, she said, “The doctors don’t know what causes either.”

Loosely defined, fibromyalgia is a musculoskeletal pain and fatigue disorder for which the cause is still unknown. Chronic fatigue syndrome (CFS) is also described as an illness without distinct explanation.

Based on information found at fibroandfatigue.com, the Fibromyalgia and Fatigue Centers Incorporated website, there is not a medical test available that will clearly diagnosis the condition. Fibromyalgia does not provide a clear physical, visual trait that can easily be recognized by a physician.

Regarding chronic fatigue, the symptoms are also clearer than the causes. The website relies on information from the Centers for Disease Control and Prevention, saying, chronic fatigue is a debilitating condition marked with extreme exhaustion and fatigue. General criteria for diagnosis include: severe chronic fatigue lasting six months or longer (having excluded other potential conditions).

Frustrated with her enduring conditions, Ms Saraceno talked about her fibromyalgia and chronic fatigue saying, “There is no real reason for either to exist. You can’t treat it.”

She does not find the alternatives sufficient either.

“You can only really treat the symptoms, and that’s because you can’t treat the fibromyalgia or fatigue,” she said. Ms Saraceno lists symptoms from allergies to irritable bowel syndrome to acid reflux. Her body has become intolerant to many medications and foods, she said.

“As far as medication, my body totally rejects antidepressants and pain meds,” Ms Saraceno said.

She is also now on “an extremely tight diet.”

She attributes some relief, and expresses much appreciation for one chiropractor, “who really understands how to treat fibromyalgia,” she said. Referring to her doctor, she said, “If it wasn’t for him I don’t know what I would do.”

Medical Opinions

Ms Saraceno has had roughly 15 years to dwell on her predicament, and has a lengthy list of inquiries of which The Bee has selected several. Doctors  experienced with fibromyalgia and chronic fatigue answer her questions, and share their understandings and opinions of these maladies.

Dr Alfonse M Campo is with the Fibromyalgia & Fatigue Center of Norwalk. He holds a bachelor’s degree in biology, earned his MD degree, and has made strides to address patients’ physical and psychosocial issues. He is a member of various medical associations and committees.

His general overview of fibromyalgia and chronic fatigue provide context for his answers.

He feels that the afflictions are “kind of one and the same.” he said. “If someone feels more pain, it’s fibromyalgia. If someone experiences more fatigue, then it’s chronic fatigue.”

A newer awareness has emerged in the medical field called, chronic fatigue immunodeficiency syndrome, he said.

“Commonly we have immunosupression whether it’s because of Lyme disease, because of pituitary malfunctions, which could lead to hormonal imbalance,” he said. “There are often sleep disorders, people just don’t sleep well.”

The sleep issues are deeply routed in the body’s function, he feels.

“When you’re about to go into restorative sleep it’s disrupted,” he said.

Offering perspective, he said, “You know how it is to get bad sleep for a day or two; you’re pale or tired from lack of sleep. Now imagine going years without proper sleep.”

Pills do not help, he agreed.

In summary he said, “It’s a whole complex. The fatigue is unrelenting with no justifiable cause.”

Dr Campo answered several questions specifically.

Q. What is the pain caused by fibromyalgia?

A. It stems from a cellular level. The muscles, joints, ligaments tell the brain something is not right there is no production of energy. There is an energy crisis. So, if this occurs in your joints for example, you have weakness or pain. If it’s in your brain, you are in a fog. Basically, whatever is the cell’s job, it’s not doing a good job.

The pain is a chain reaction, a low production of energy in cells induces nerves to carry impulses saying, “pain.”

Q. Why does pain move or manifest in different areas from one day to the next?

A. It can become dominant in one area, and often in the early years you could have months of being well, and then for 10 to 15 days there is a flare up and you’re lousy. Movement? We don’t know why, it’s a characteristic of the disease.

Q. Why does the body reject medications?

A. There can be multiple sensitivities. Normally tolerated foods or medications may not be tolerated anymore; even perfumes can set you off. Because of immune dysfunction there is often an increase in incidents of autoimmune diseases. We could have our cells fighting ourselves; we don’t recognize parts of ourselves as our own. Colitis, lupus, rheumatoid arthritis, but you don’t see these too often. You will see higher incidents of rashes, eczema, but not full-blown diseases.

Q. Why are Lyme disease and chronic fatigue syndrome often misdiagnosed?

A. Lyme is one of the biggest causes of chronic fatigue syndrome in our area. The reason it’s misdiagnosed is some people don’t have the classic, visible rash. Otherwise, it would be diagnosed. If a bite doesn’t manifest and you let it go, it sets in and becomes chronic. Then it leads to immune dysfunction and you don’t produce enough antibodies, therefore the test for Lyme turns out negative.

Q. Why do doctors have a hard time understanding the cause [of fibromyalgia, chronic fatigue]?

A. It’s complex. You must read all that’s available on chronic fatigue syndrome and with experience over time you develop understanding about the condition.

In my mind it’s a blind spot in medicine. No one is doing the big studies. The big studies are funded by pharmaceutical companies, and they want to develop a product that makes a return.

Q. What is the best thing to do?

A. Acupuncture, chiropractors, message may help, but they’re not sufficient to resolve the condition. They’re only a stopgap measure. The best thing to do? It’s difficult, but you have to take a comprehensive approach. We address the nutritional and hormonal deficiencies, immune dysfunction, cell dysfunction by using any medicinal, holistic, herbal, and natural approaches available. We are very open-minded. Sometimes there is even a coagulatory that needs to be addressed. And of course, treatment of underlying problems.

Dr Campo’s ideas are in some ways perfectly harmonized with local chiropractor, Dr Eugene Cayer’s methods. His practice focuses on nutritional health and his practice now encompasses acupressure, acupuncture, allergies, thyroid conditions, and takes a holistic approach to a person getting back to health, he said.

Regarding the fibromyalgia and fatigue, Dr Cayer said, “We try to find out the causes, there are a lot of factors underlying.”

He concentrates on the body’s nutrition. “We want to make sure the digestion is strong.”

Again Lyme disease enters the discussion as Dr Cayer explains, “Sometimes old and inactive Lyme” may be an underlying problem. “We try to find something that is out of balance.”

Chronic fatigue also could be a result of  “something else going on,” he said. “Some have undiagnosed Lyme.”

Nutritional absorption is important, as well as discovering what may be straining a persons’ system, he said.

Attempts to “get the system open again” involve acupuncture and acupressure. Allergy tests also are a key ingredient in many sufferers.

“Many fibromyalgia patients have allergic reactions,” he said.

Also echoing other professionals, Dr Cayer correlated fatigue with the fibromyalgia, explaining that it has “a component of fatigue all the time. Most people have some of both going on.”

He believes that one fourth of the battle is nutrition.

“It’s almost like a wonderful garden and you forget to fertilize or don’t water. It throws it off,” he said. “Our body is an echo-system and you have to obey the laws of nature.”

Both he and Dr Campo believe that recognition is increasing.

Dr Cayer said, “It is much more acknowledged in the past couple of years. It’s not all in patient’s head and not a psychological problem.”

He recommends getting enough fruits and vegetables, water, and sea salt.

Underlying imbalances may be triggered by something as small as an insect bite, he said.  Symptoms may start with a metabolic imbalance, for example, and escalate.

“There are a lot of factors a person has to work on,” he said.

The symptoms can vary from one patient to the next depending on the system affected and the severity of allergies, intolerances to food, etc, he said.

With a final word of encouragement, he said, “This is treatable, but you have to find the right combination of things.”

Visit Drcayer.com, and fibroandfatigue.com for further information.