Some unexpected casualties in the war on drugs: pain patients who avoid potent opioids out of fear of addiction, doctors who won't prescribe them because of red tape, pharmacies that won't stock them because of theft worries. Is OxyContin the latest example of a much-needed drug that's fallen victim to 'opio-phobia'?
Aug. 13, 2001 -- Oncology nurse specialist Carol Blecher, RN, MS, AOCN, knows the face of pain and the face of fear.
Cancer, says Blecher, is not a gentle, silent enemy but rather a painful, raging foe, which must be fought with powerful weapons that often cause their own unremitting pain. So easing or eliminating a patient's pain is often Blecher's primary concern.
"But every day patients and families come to me filled with fear about taking opioids," she says -- narcotic drugs like methadone, morphine, and OxyContin. That fear, called "opio-phobia," can stand in the way of relief for many patients.
At her office at Valley Hospital System in Ridgewood, N.J., Blecher says the media frenzy surrounding abuse of the long-acting painkiller called OxyContin has fueled patients' fears. "Now patients and families are asking: Does this drug make you an addict? I have to just tell them over and over that they are taking the drug for pain, not for addictive reasons," says Blecher, a spokesperson for the Oncology Nursing Society.
Drug a 'Lifeline' for Cancer Patients
The furor surrounding use of opioid painkillers is very frustrating for pain management specialists like Syed Nasir, MD. "I take care of people who have cancer, and for these people [OxyContin] is a lifeline," says Nasir, a neuro-oncologist at the Culichia Neurological Clinic in New Orleans.
Both patients and physicians have traditionally been wary about the use of narcotics for pain relief, he says, because of fears it could trigger addiction. It makes for a great movie-of-the-week plot -- traumatic injury leads to unrelenting pain that can only be eased with morphine, turning an unsuspecting housewife or grandmother into a raving junkie -- but such tales have little basis in medical reality, says Nasir. In fact, he says, only about 1% of people who take drugs such as OxyContin for treatment of chronic pain will become addicted.
How It's Abused
Johns Hopkins University cancer expert Michael Carducci, MD, says that some cases of OxyContin abuse may be related to confusion about how the drug should be given. Doses of older long-acting opioids, such as MS-Contin, could be increased from two times a day to three, four, or more times a day. OxyContin, on the other hand, is "a twice-a-day drug, not three times, not four times a day," he says.
The drug's special formulation allows for an immediate release into the bloodstream followed by "12 hours of slow release, so each pill lasts for 12 hours," says Carducci.
Abusers of the drug discovered that if extended-release OxyContin pills were ground up and snorted or injected, the user could, in effect, get the entire 12 hours' worth of drug at one time, resulting in a much more intense high. Such use has been blamed for around 100 deaths nationwide and prompted the FDA last month to strengthen warnings on the drug's label, likening it to morphine. The agency also mailed letters to doctors, pharmacists, and other healthcare providers alerting them of its potential for abuse.
And just last week, manufacturer Purdue Pharma announced its plans to reformulate the drug in an effort to discourage such abuse. The new form of OxyContin -- available in three to five years -- will come mixed with tiny beads of naltrexone, a drug that counteracts the effects of narcotics and is used to treat heroin addiction. The naltrexone is designed to be inactive as long as the pill is intact -- crush it, however, and the high-busting naltrexone is released.
Media Overkill?
While the torrent of news stories about OxyContin abuse has certainly raised public awareness of this deadly new drug trend, it's also fanned the flames of opio-phobia, say critics.
As the point man in implementing new federally mandated pain-control measures at Johns Hopkins, Carducci says he deals daily with the results of painkiller paranoia.
"I am implementing this plan in which all patients are asked if they have pain, and then a pain care plan is started," he says. "Now it makes that job even harder because people are afraid to take drugs for pain."
New Drug, Old Fears
Many pain experts are concerned that scary headlines are making opio-phobia worse, says Daniel Bennett, MD, a Denver-based pain management specialist. Bennett, co-founder of the National Pain Foundation, recently joined other pain specialists for an international symposium on the problem of irrational fear of opioid drugs.
Much of the attention being paid to OxyContin abuse is silly because very similar drugs like "MS-Contin have been around for 10 years or longer," he says, with no attendant bad media.
The U.S. has a history of opio-phobia that stretches back to legendary newspaper publisher William Randolph Hearst, says Bennett, who used his newspapers to campaign against the dangers of opium almost 100 years ago.
In the current environment, opio-phobia is flourishing because both physicians and patients are uneducated about pain and pain treatment.
"The average physician has less than two hours of formal training in the treatment of pain," says Bennett, assistant clinical professor at the University of Colorado Health Sciences Center in Denver. "Yet, the number one reason for visiting a doctor is because of some painful problem."
Dependence Doesn't Equal Addiction
Even though pain leads people to seek medical help, too many patients suffer needlessly because they have misplaced fears about the use of opioid medicines, says Akshay Vakharia, MD, a pain management specialist at the University of Texas Southwestern Medical Center in Dallas. Those fears often stem from confusion about the difference between dependence and addiction.
Patients who are treated for long periods with opioid medicines like OxyContin -- meaning more than two weeks -- will experience physiological dependence on the drug. That means, simply put, that if the patients abruptly stopped the drug they would have symptoms of withdrawal, such as tremors, nausea, diarrhea, and sweating. In many cases the symptoms are mild and not like Diana Ross' bathroom histrionics in "Mahogany." And if the patient is gradually tapered off the drug, there are no symptoms and, most importantly, there "is no relapse, no drug-seeking behavior," says Vakharia.
Bennett says he and other pain experts want to get the message out that addiction is not a significant risk when drugs like OxyContin are used to treat pain. Moreover, he says that the whole concept of tolerance, meaning that patients get used to the drug at a low dose and then need higher and higher doses to overcome pain, is flat-out wrong.
"If the patient is started on an opioid and the dose is adjusted to a level where pain is adequately treated, the patient can be maintained on that same dose for the long-term," says Bennett. When a patient complains that pain has returned "it usually means that either the disease has progressed or there is something else, another condition," he says.
Moreover, Bennett says, even after years on opioids, patients can be taken off the drugs without fear of relapse. He points to one of his patients who took methadone for a painful hip defect. After many years the patient had hip replacement surgery, which freed him from the pain.
"We weaned him off the methadone and he has been methadone free for two years, no problem. Taking the drug did not make him an addict," says Bennett.
Why such a low risk of addiction with such powerful narcotics? It seems the body processes drugs differently when they're taken for genuine pain and when they're taken for recreational purposes.
"Patients without a history of addiction who actually have bona fide pain don't get high when they take these drugs for pain," says psychiatrist and addiction specialist Elizabeth Wallace, MD. For most pain patients OxyContin "relieves the pain but doesn't give the buzz," says Wallace, director of professional services at Professional Renewal Center, a drug treatment center in Lawrence, Kan.
It's yet another of the missing pieces of information that contributes to the opio-phobia phenomenon. Yet until both physicians and patients are educated about the real opioid story, such misinformation and fear will continue to stand in the way of "getting the job done: treating patients and their pain," says Bennett.
Getting Past The Pain of Fibromyalgia.
---by Amy Jones, R.N.
Learn how to recognize this puzzling condition and help your patient deal with its life-changing complications.The first sudden bout of joint pain involved my hips. Waking up in the morning, I'd be unable to walk or even stand at times. The pain didn't respond to acetaminophen or ibuprofen, but it generally eased as the day progressed. By night I could usually function normally, even go roller-skating with my children. I attributed the symptoms to overwork--I was a busy nurse--or the effects of getting older, although I was only 34.
Then the pain started moving around. It never stayed in one place long enough to treat or even assess. By the time I'd made a physician's appointment, it had moved on to wreak havoc in another area.
And pain wasn't the only symptom. I had trouble finding the right words, couldn't sleep, and developed night sweats. Although I'd made no changes in my eating or exercise habits, my weight ballooned.
After about a year, the pain had become continuous and was affecting my ability to work and to care for my family. After a week of crawling to the bathroom each morning because my legs wouldn't bear my weight, I made yet another physician's appointment.
The physician diagnosed fibromyalgia, but I was a nonbeliever. To me, fibromyalgia was up there with chronic fatigue syndrome--a "nondisease." I declined the physician's suggestion of a trial of antidepressants and nonsteroidal anti-inflammatory drugs (NSAIDs). Instead, I told myself to buck up, get more exercise, and deal with it.
Unfortunately, exercise only made the pain worse. When I realized I was losing the battle, I agreed to try his suggestions. But antidepressants produced unacceptable adverse reactions and NSAIDs didn't touch the pain--which now affected my hips, knees, shoulders, hands, and rib cage.
I saw my physician again and did a little research.
Not just "in your head"
Fibromyalgia, pain in the fibrous tissue, isn't a new disease. However, it's often confused with rheumatoid arthritis, chronic fatigue syndrome, hypothyroidism, and giant cell arteritis. A chronic disease, it isn't life-threatening, but the persistent severe pain can dramatically reduce the quality of life.
Between 3 million and 6 million Americans suffer from fibromyalgia; it's more common in women than men by a ratio of 20 to 1. Age at onset typically is between 29 and 37, although it can strike at any age.
Fibromyalgia can't be confirmed by diagnostic studies, and the cause remains a mystery. Consequently, many patients with the disorder have been labeled hypochondriacs. But recent research has uncovered several possible physiologic explanations for the symptoms.
* Altered microcirculation in muscle tissue. This may contribute to muscle hypoxia and ischemia, causing the fatigue, muscle tenderness, and pain patients experience 24 to 48 hours after exercise.
* A disruption in restorative deep sleep and low levels of serotonin and tryptophan. Serotonin is needed for deep sleep; when it's depleted, the patient has less deep sleep. Growth hormone, needed for homeostasis and fat metabolism, is primarily secreted during deep sleep. Reduced growth hormone secretion may account for the sudden weight gain reported by many patients with fibromyalgia.
* Increased pain perception because of more "substance P," a neuropeptide that carries pain signals. Substance P helps nervous system cells communicate with each other about painful stimuli. An increased level of substance P leads to increased pain perception. A study also found that patients have less blood flow to two areas of the brain that regulate the amount of pain signals received by the brain, giving them less ability to control pain.
* Trauma. Some patients' symptoms begin after physical or emotional trauma, such as a motor vehicle accident, divorce, or death of a loved one.
* Genetics. Fibromyalgia may be familial in nature--studies show that a high prevalence of patients have family members with the disease--particularly mothers (83%), sisters (62%), and daughters (26%). Interestingly, 19% of patients have husbands who also have fibromyalgia, indicating a possible environmental, dietary, or lifestyle component.
* Depression. This is a chicken-or-egg issue: Does depression cause fibromyalgia or does fibromyalgia cause depression?
Recognizing fibromyalgia:
Fibromyalgia is diagnosed from the patient's history and by ruling out other conditions, including hypothyroidism, rheumatologic syndromes, and myopathies induced by drugs (such as the lipid-lowering statins). The American College of Rheumatology lists these diagnostic criteria:
* pain in the upper and lower body, bilaterally, and on the spine, and persisting for 3 or more months
* pain on palpation in at least 11 of the 18 "tender points"
The patient also may have some of the following symptoms or conditions: stiffness exacerbated by inactivity, swelling in the soft tissues, muscle spasms or palpable nodules in affected muscles, mood swings and depression, difficulty with memory or concentration, paresthesia, hypoglycemic-like syndrome, irritable bowel or bladder syndrome, migraine headaches, chronic fatigue, decreased endurance, sleep disturbance, dysmenorrhea, disequilibrium, and environmental sensitivity.
Individual treatment:
Because fibromyalgia symptoms change over time, treatment is progressive and should be individually tailored to the patient. Once the patient gets over the initial pain hurdle, one of the most beneficial treatments for fibromyalgia is exercise. Exercise increases endorphins, the body's natural painkillers and sleep-deepening substances, and stimulates secretion of human growth hormone, serotonin, and blood flow to the muscles.
A physiatrist, a physician who specializes in physical medicine and rehabilitation, should recommend and design a program tailored to the patient's condition. For example, the patient may start with just 3 to 5 minutes a day of exercise, with slow increases to avoid inducing pain. Swimming or exercising in water is often recommended because it puts less strain on the joints.
The patient's muscles may have atrophied from prolonged inactivity. Collaborating with a physiatrist gives her the support she needs to build up stamina.
Some drugs also can help fibromyalgia. Low doses of tricyclic antidepressants may help by increasing deep sleep. A combination of a selective serotonin reuptake inhibitor in the morning and a tricyclic antidepressant at night can be beneficial.
Some patients benefit from zolpidem (Ambien) and alprazolam (Xanax) used as short-term sleeping aids. Muscle relaxants may help treat muscle spasm and control pain, and NSAIDs such as celecoxib (Celebrex) and rofecoxib (Vioxx) also may ease aches and pain. Local anesthetic or corticosteroid injections at painful tender points are other options. Because of the risk of opioid dependence, chronic opioid analgesic therapy is a last resort in patients whose pain is moderate to severe despite other therapies.
Nonpharmacologic treatments include cognitive therapy and psychotherapy, which can help patients understand and deal with the pain and life changes brought about by fibromyalgia. Massage therapy can help with general muscle aches and pains, and stretching can help limber up inactive joints.
Acupuncture can be combined with other therapies for pain relief.
By customizing therapy to your patient and providing support and encouragement, you can help her live with fibromyalgia. I had to give up staff nursing but with exercise, weight loss, and a job change, I've been able to return to a more functional life.
Selected References:
Buskila, D., and Newmann, L.: "Fibromyalgia Syndrome (FM) and Nonarticular Tenderness in Relatives of Patients with FM," Journal of Rheumatology. 24(5):941-944, May 1997.
Buskila, D., et al.: "Fibromyalgia in Hepatitis C Virus Infection. Another Infectious Disease Relationship," Archives of Internal Medicine. 157(21):2497-2500, November 1997.
Hadhazy, V., et al.: "Mind-Body Therapies for the Treatment of Fibromyalgia. A Systemic Review," Journal of Rheumatology. 27(12):2911-2918, December 2000.
Maurizio, S., and Rogers, J.: "Recognizing and Treating Fibromyalgia," Nurse Practitioner. 22(12):12-33, December 1997.
Millea, P., and Holloway, R.: "Treating Fibromyalgia," American Family Physician. 62(7):1575-1582, October 1, 2000.
Selected Web Sites:
American Fibromyalgia Syndrome Association, Inc. ¥ AFSA ¥
Arthritis Foundation ¥ Arthritis Foundation ¥
How can a sufferer get relief from restless legs syndrome?
You need to stimulate your skin to get the blood to flow. Alternating hot and cold compresses should help. Or after a warm shower, stand under a cold shower for a long 30 seconds, then rub your body vigourously with a fluffy towel to warm yourself up and bring the blood back. Or exercising and moving your arms to get the blood flowing will ease the discomfort.
Here's what "the experts" say:
Definition:
heebie-jeebies
Noun: Slang. A state of nervous restlessness or agitation: fidget (often used in plural), jitter (used in plural), jump (used in plural), shiver1 (used in plural), tremble (often used in plural). Informal : all-overs, shake (used in plural). Slang : jim-jams, willies. See calm, fear.
From Massachusetts General Hospital Department of Neurology Web Forum ¥ MGH Forum ¥:
Post #1: Heebie-jeebies:
I am in excellent health and take no drugs beyond an aspirin now and then, but . . . I, too, get restless legs and arms from time to time, only in bed at night, making it impossible to sleep. Sometimes I also get creepy crawlies up into the buttox/hip area. I am a great believer in supplemental vitamins and minerals and through experimentation I have found that 25mg. of B-complex fixes my restless legs. I take the B-complex just as I turn off the light to go to sleep. The higher up heebie jeebies are fixed with calcium. I take a 600 mg. calcium pill along with the B-complex. And, believe it or not, when no calcium or B-complex is available . . . an aspirin works just as well. Probably, the aspirin is a quick-fix, whereas the B-complex and calcium are natural to the body and would be more beneficial in the long run. I wish you restful nights.
Post #2: Heebie Jeebies
Finally someone else that uses that term, I use it all the time to describe the feeling I get when I need to take a dose of oxycontin. Although it may be difficult to define, I'll try. For me it's like an anxious, skin feels clammy and hot (almost sweaty, but not wet), I personally feel a little tired. If you can imagine that feeling you have when real cold air hits you and you do a kind of quick shiver. It's like that feeling repeatedly. You don't feel settled or at ease.
I had heard people describe withdrawl feelings that I would classify as "heebie jeebies". Sorry, but that's the best I can do, I hope it helps people understand what people mean when they say it. I certainly hope I didn't miss what you would classify as the heebie jeebies but that's what they are to mean. Restless Leg Syndrome or Heebie Jeebies
What is Restless Legs Syndrome?If you have restless legs syndrome (RLS) you'll probably recognize these symptoms:
* An urge to move the legs, often accompanied by uncomfortable sensations in the legs, usually described as a creeping or crawling feeling, but sometimes as a tingling, cramping, burning or just plain pain. Some patients have no definite sensation, except for the need to move.
(The arms may also be affected, but that's much less common.) * The need to move the legs to relieve the discomfort, by stretching or bending, rubbing the legs, tossing or turning in bed, or getting up and pacing the floor. Moving usually offers some temporary relief of symptoms.
* A definite worsening of the discomfort when lying down, especially when you're trying to fall asleep at night, or during other forms of inactivity, including just sitting.
* A tendency to experience the most discomfort late in the day and at night.
Restless leg syndrome is a disorder that causes feelings in the legs and arms that have been described by sufferers as:
* tingling,
* numbness,
* pins and needles,
* tiredness,
* itching,
* uneasiness,
* pain,
* cramping,
* aching,
* burning,
* creeping,
* crawling, or
* simply indescribable. Sleep disturbances are common with RLS, primarily because of the difficulty it causes in getting to sleep. If leg twitching or jerking is also present, a related disorder called periodic limb movements during sleep (PLMS) may be the cause. With PLMS, the leg movements may be severe enough to awaken you (see the PLMS fact sheet). In RLS, PLMS-like symptoms can sometimes occur during wakefulness, as well as in sleep.
How common is RLS?Restless leg syndrome may affect as much as 2-5 percent of the population, with varying degrees of intensity.
What causes RLS?The cause of RLS is still unknown. Some cases are inherited and more than one family member may be affected. Some cases have been associated with nerve damage in the legs due to diabetes, kidney problems or alcoholism. RLS can also be a side effect of a pinched nerve root from arthritis in the lower back (sciatica).
Is RLS serious?RLS is not considered medically serious. However, the symptoms can range anywhere from bothersome to incapacitating. Fluctuations in severity are common, and occasionally the symptoms may disappear for periods of time.
RLS can begin at any age, but the symptoms tend to worsen over the years and become more severe in middle-to-old age. Pregnancy or hormonal changes may temporarily worsen RLS symptoms. Stress, diet or other environmental factors may play a role for some people.
Can RLS be treated?Self-directed activities that counteract your symptoms of RLS appear to be very effective, although temporary, solutions to managing the disorder. You may find that walking, stretching, taking a hot or cold bath, massaging your affected limb, applying hot or cold packs, using vibration, performing acupressure, and practicing relaxation techniques (such as biofeedback, meditation, or yoga) may help reduce or relieve your symptoms. You may also find that keeping your mind actively engaged through activities such as a participating in a stimulating discussion or argument, performing intricate needlework, or playing video games helps during times that you must stay seated, such as when you are traveling.
If you have symptoms of restless leg syndrome, some things you can try at home to get relief from your symptoms include:
* stretching or massaging the affected muscles before going to sleep,
* wearing long socks to bed,
* using a hot water bottle or cold compresses on the affected area prior to going to sleep,
* avoiding caffeine and tobacco in the evening,
* using an over-the-counter topical pain killer like Bengay, Flex-All 454, or Gold Bond, or
* taking a hot bath before bedtime. Unfortunately, in many cases, the symptoms of RLS either initially do not resolve with the treatment of underlying disorders and the implementation of lifestyle changes or, over time, progress so that relief is insufficient with these methods. In either case, the use of medications (pharmacologic therapy) may become necessary.
There are three main classes of medication that have been shown to be effective in treating both RLS and PLMS.
* Benzodiazepines - This class includes such drugs as diazepam (Valium), clonazepam (Klonopin), temazepam (Restoril) and triazolam (Halcion).
* L-Dopa - This class enhances a brain chemical known as dopamine. It includes such drugs as L-Dopa with carbidopa (Sinement), pergolide (Permax) and bromocriptine (Parlodel).
* Opiates - This class generally is reserved for the more severe symptoms. It includes codeine (active ingredient in Tylenol #3), oxycodone (active ingredient in Percocet), propoxyphene (Darvon) and methadone (in very severe cases only).
All of these medications are available by prescription only and should only be taken while under the care of a licensed physician.
Where do I go for help?Seek professional medical advice. You may wish to begin by consulting your family physician or by making an appointment for an evaluation at an accredited sleep disorders center in your area. For a listing of accredited centers, contact:
The National Sleep Foundation, 1522 K St., NW, Suite 510, Washington, DC 20005. Phone (202) 347-3471 or fax (202) 347-3472.
For more information on Restless Legs Syndrome:
¥ Restless Leg Syndrome Foundation ¥ ¥ Facts about Restless Legs Syndrome ¥¥ Southern California Restless Legs Syndrome Support Group¥
Poppy's Chronic Pain ForumEmail: poppyschronicpainforum@yahoo.com
