Fibromyalgia is tough to pin down, tough treat

Sue Maxwell describes her pain as feeling like someone is slowly bending her bones.

For Lois Reid, it's more of a generalized ache that brings a fatigue that robs her of focus during the day and sleep at night.

Maxwell and Reid have fibromyalgia, a disorder that causes chronic and sometimes debilitating pain.

Both are former patients of Dr. Stephen Plotnick, a Virginia Beach physician who last week gave up his medical license for at least two years and promised never to treat chronic pain patients again.

Plotnick's agreement with the Virginia Board of Medicine followed board allegations that he failed to properly prescribe and monitor powerful pain drugs. Five patients died and others were permanently injured under his care, according to board records. Most of them had been diagnosed with fibromyalgia.

Plotnick specialized in aggressive treatment of the condition, and his case shows the high stakes for doctors and patients in managing chronic pain.

For local fibromyalgia patients like Maxwell and Reid, the case highlights the difficulty they have getting relief. More than 20 years after the American Medical Association recognized the disorder, many doctors are still skeptical of patients' claims of pain or are not confident about how to treat it.

Most doctors agree that the best treatments for fibromyalgia, which affects 10 million Americans, are antidepressants, physical therapy, certain types of exercise, and fairly new medications developed for the condition - Lyrica and Cymbalta. Most people find relief from those approaches.

For a minority of patients, however, those measures might not work.

Some of them find relief through narcotics - which doctors refer to as opioids - such as methadone, OxyContin and morphine.

Many doctors, though, are reluctant to prescribe narcotics for a variety of reasons: concern that patients will abuse the painkillers or become addicted; the potential for death or disabling side effects; and the scrutiny of medical boards and of the Drug Enforcement Administration, which tracks prescriptions for narcotics.

After Plotnick's license was first suspended in August, his patients scrambled to find doctors to prescribe the same drugs so they wouldn't get sick from suddenly stopping the medicine and so their pain would not return.

Patients expressed worry in online chat groups, at a local support group and during interviews that they wouldn't find the kind of outspoken support Plotnick provided for those with fibromyalgia or other chronic pain disorders.

"There are thousands of people in this area suffering severely with chronic pain and who have no quality of life because doctors are afraid to prescribe narcotics," said Judy McClary, a fibromyalgia patient and a consultant for others with the condition. She has taken narcotics for years.

"I know we need guidelines and checks and balances, but we need a balance," said McClary, who often referred people to Plotnick. "People can't be afraid if their doctor has a stroke or accident, there's no one else to give them medication."

The past decade has brought great strides in addressing pain, particularly for cancer patients in the last stages of their disease.

But people with chronic, nonfatal disorders like fibromyalgia often run into barriers because long-term drug regimens are trickier to administer and more controversial.

Dr. Robert Hansen, a neurologist who practices at the Center for Pain Management in Portsmouth, said people may cringe at the mention of morphine and methadone. But some people with severe pain need such high-powered drugs just to function normally and keep their jobs, he said. Used appropriately, the drugs can be less damaging than years of over-the-counter medicines, he said.

After Plotnick's license was suspended, Hansen's office was deluged with requests from Plotnick's former patients. In one case, a patient ended up in the emergency room in withdrawal. Hansen requires referrals and records and had hoped the patient's primary care physician would prescribe the meds until she could be seen in his office.

But, Hansen said, many doctors are loath to prescribe the painkillers.

"They worry they're going to show up to work one day and have crime tape around their office."

The Virginia Board of Medicine's guidelines, adopted from a model policy crafted by the Federation of State Medical Boards, call for strict monitoring and documentation of treatment plans and refill requests, written agreements with patients, urine screens and procedures for discontinuing treatment if there's evidence of misuse or noncompliance.

Urine screens show whether patients are using the drugs prescribed and whether there are other drugs in their system that could be dangerous in combination.

People with a history of substance abuse or psychiatric disorders are supposed to receive more scrutiny. The policy clearly states, though, that inadequate treatment of pain is a problem in this country and that doctors need to understand the difference between addiction to and dependence on painkillers.

The Virginia Board of Medicine alleged that Plotnick failed to document treatment plans, repeatedly authorized renewals of prescriptions without examinations, neglected to require contracts with his patients, did not always dismiss patients for noncompliance, and continued to prescribe medications even though patients had exhibited suicidal thoughts or family members said they were overmedicated.

Such detailed steps can be cumbersome for doctors.

Added to that are other concerns.

"It's the disease no one wants to embrace," Hansen said.

Fibromyalgia is an invisible, poorly understood condition with no lab or blood test to confirm diagnosis. It affects people in an array of ways - mild aches to debilitating pain - and a treatment that works for one may not work for another.

One of the principles in the field of pain management - "pain is what they say it is" - can be an uneasy guide for some physicians.

Some patients with fibromyalgia still run into doctors who don't believe it's real, even though the American Medical Association recognized it as an illness in 1987.

Studies have shown that people with the condition, believed to have its root in how the brain processes pain signals, have a higher level of brain activity in response to pain stimulus than people without it.

It's not unusual for people with fibromyalgia to see a range of doctors, though rheumatologists often diagnose it. The National Fibromyalgia Association says people typically see an average of four doctors before getting a diagnosis. A study conducted for the American Pain Society found that one out of four chronic pain patients changed doctors at least three times, mainly because they still experienced pain.

When Maxwell, 62, was diagnosed with the condition two decades ago, she had never heard of it.

"The ache is like a toothache, where it can be mild or it can be so bad you can't take it. If you touch my skin, it hurts. The bottom of my feet hurt, my shoulders hurt, and it goes down my arms, then all over. You just hurt so bad. Your muscles ache, your jaws hurt, everything hurts."

The Virginia Beach woman first heard of Plotnick when he spoke at a support group meeting for people with chronic pain about two years ago.

The next day, she called for an appointment.

"He's the only one who understood what you were talking about. I felt like I was finally getting some good help. He explained in detail what it was. He said, 'We will take care of that pain.' "

She said he would give her several narcotic prescriptions and tell her to try one first to see if it worked. If it didn't, she was to stop that one and take another to see if it worked.

Even though that was one of the methods the Board of Medicine criticized, Maxwell appreciated the approach because it kept her from going back to his office so often.

"I think the patient has to take some responsibility in keeping track of meds," she said.

"Some of the things Plotnick had me on... I didn't feel pain, but I did feel a little loopy."

When that happened, she said, she reduced the dosage. "It took awhile to find the right combination that made me feel like myself again."

But when she did, "it was like heaven. It was like a whole new world. I could wash the dishes, clean the house, I could do laundry."

When Maxwell went by Plotnick's office for a refill last summer, though, she found he was no longer practicing. She tried getting in to see a pain management specialist, who told her to send her records. The office said the doctor would review them and call her to set up an appointment.

She never heard back.

"I had no meds for five days," Maxwell said. "I panicked."

She resorted to taking morphine that had been prescribed for a friend, but she stopped that after a month and a half when her doctor told her if she continued to take it, she'd have to report her.

Maxwell went through days of withdrawal, bedridden from chills, flulike aches, vomiting and diarrhea.

Her primary care physician wouldn't prescribe the narcotics, nor would her rheumatologist, but between the two of them she was prescribed two non-narcotic drugs that eased her pain. Swimming, which she took up more than a year ago, also helped her cope.

"I didn't feel good being on narcotics, but when you're in pain, you don't care, you think, 'Just give me anything.' Many times you feel like committing suicide. You think, 'If it's going to be like this, I don't want to be here.' "

Even though she's now free of narcotics and able to handle her level of pain, she supports Plotnick and said she'd return to him if it were possible.

"There's no one but him who understands and wants to help us."

Lois Reid was diagnosed about 20 years ago, too, and was able to control her pain for years with an antidepressant and an anti-inflammatory. Then about three years ago, her pain increased. The 50-year-old Norfolk woman had a hard time concentrating, a symptom many refer to as "fibro fog." She had trouble sleeping.

"When you're in pain, it's hard to sleep. If you don't sleep, you feel more pain. So it's a vicious cycle."

She went to a variety of doctors before seeing Plotnick. One drug he prescribed was methadone, a narcotic similar to morphine.

Her pain eased, but about eight months ago, she started feeling more fatigue. "I'd be holding a glass of something to drink, and the next thing I knew it'd be over the top of me."

Two nights in a sleep clinic showed she stopped breathing while sleeping and would awaken gasping for air. Sleep specialists there told her to stop taking the methadone, as one of the side effects of the drug can be sleep disturbances. She has stopped, but she continues to have the sleep problems. She uses a machine at night that pumps air into her lungs through a mask.

"I am sad for him on a human level," she said of Plotnick. "I think he had good intentions. But I'm frustrated because medicine he prescribed me led to difficulties. That's a hard thing as well."

Dr. Janet Lewis, medical director of the rheumatology clinic at University of Virginia Health System, said proper treatment includes a combination of approaches.

There is medication that can improve sleep and thus reduce fatigue and pain during the day. Also, patients can become inactive because of pain, but exercise has been shown to help.

"It gives them more energy, helps them sleep better and reduces pain during the day."

She said there are new drugs specifically for fibromyalgia, and physical therapy helps some people.

She sees narcotics as a last resort to pain, because there haven't been large-scale studies to show strong effectiveness in the population. She refers those patients who feel they need them to pain management specialists.

Dr. Robert Bennett, a rheumatologist in Oregon who has treated and researched the disease for decades, said many family practice doctors and rheumatologists hesitate to prescribe high-powered painkillers to their fibromyalgia patients.

"It's a hassle prescribing them," Bennett said. "You can't repeat prescriptions. You have to see them regularly. You know the DEA is looking over your shoulder. You're aware of cases like this, and it makes you wary."

Across the country, doctors are being scrutinized for prescribing high doses of narcotics over long periods of time. In Virginia, one of the more high-profile cases involved Dr. William Hurwitz, a Northern Virginia pain specialist convicted in 2007 of 16 counts of drug trafficking for prescribing high doses of OxyContin and morphine.

The judge in the case said that much of Hurwitz's practice, which spanned 39 states, was legitimate, but that he ignored patients who were clearly drug dealers.

The number of suspensions, revocations, restrictions and reprimands by the Virginia Board of Medicine related to drug prescriptions has been rising. There were 17 actions in 2006, 26 in 2007, and 33 in 2008.

Yet patients should not have to live in pain, either, Bennett said, and some benefit from opioids when the drugs are properly prescribed and monitored.

"We have people in our practice who have taken them long term and done very well."

At the clinic where Hansen, the Portsmouth physician, practices, patients on the opioids are seen once a month when they start the medication. They have periodic urine drug screens. If patients come in for an early refill, the office can request a report from a state database that shows all the drugs pharmacies have dispensed to that patient.

A staff psychologist works on depression, anxiety and life issues that may be causing or worsening pain. Exercise is required of those with fibromyalgia, and non-narcotic drugs are tried before opioids.

Those patients who do require opioids for pain relief must sign a contract that they will receive the prescription drugs only from that practice and won't give them to anyone else. If they break the contract, they are dropped from the practice.

McClary said Plotnick had dismissed patients for lack of compliance but sometimes took them back.

"The reason he took them back is they were in severe pain and could not find another doctor in Tidewater to give them medication."

Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com