I found this online at the website www.healingwell.com. It is written by a nurse and fellow lupus patient and is informative. Enjoy!
Chronic Pain in Lupus
by Karyn Moran Holton
Chronic pain. Pain that goes from bad to worse to unbearable. Pain that lives with you every day of your life, never ceasing, not even long enough to get a night’s sleep, is one of the worst things about having lupus.
Because lupus primarily affects women, I found it interesting that the National Institute of Health noted that women report more severe and chronic pain than men, and urged doctors to factor sex into diagnosing, treating, and researching chronic pain management. (JAMA, 280:120-124. 1988)
The NIH Revitalization Act of 1993 mandated that women and minorities be included in clinical research. Previously, pain research had been male-oriented because of (get this) “The alleged rationale has been that the estrus cycle in women would confuse the results.”
It may be true that women react to pain differently than men do. Dr. Lesche of NIH states, “Pain may arise in women with differences in anatomy or physiology of neural systems, perception of pain, and the cognitive and emotional ways of dealing with pain.” If pain may arise in women, then more research is needed focusing solely on chronic pain in women! Simply ignoring women’s pain is not a viable solution, and more therapies for the relief of chronic pain must be found.
The first line of defense against chronic pain in inflammatory diseases like lupus and arthritis has always been pharmacological. Non-steroidal anti-inflammatories (also called NSAIDs) such as aspirin and ibuprofen (Advil or Motrin) have been used to treat mild cases with success. For more intense pain that does not respond to NSAIDs, narcotic analgesics, such as demerol and morphine may be used. However, for some patients with chronic pain, the addictive effects of narcotics may be too much for them to be used on a long-term basis.
This is where alternative therapies have stepped in. Pain relieving techniques like hypnosis and magnetic stimulation therapy have given patients a non-medicinal alternative that may be more beneficial in the long term.
Dr. P. Logue, of Duke University Medical Center‘s Department of Psychiatry and Behavioral Sciences, made some statements regarding hypnosis: “It is known that a patient’s cognitive and emotional state can influence their physiological system. Changes in their physiological state can affect their overall function. This intimate mind/body relationship can be used to treat painful states via hypnosis. Enhancing the nervous systems inhibitory process can modify pain…Hypnosis can induce a state of relaxation, calmness and peacefulness, even in the midst of external distress. This temporary state of calm can effectively reduce a patient’s subjective experience of pain.” Dr. Logue also stated, “Why would any clinician want to use a procedure that must be explained and justified to the ‘outside’ world? Because it works. Not always in a spectacular fashion, not with every patient, and not with every condition, but it does work.” (NC Medical Journal, 53:176-179, 1988.). In NIH studies, 75-80% of patients had a positive reaction to hypnosis.
Another fairly new type of therapy for chronic pain is magnetic stimulation. According to Dr. J. Pujol of the Magnetic Resonance Center of Pedralbas in Spain, a study using magnetic stimulation to localized pain reduced pain 29 (out of 101) points in patients. In a sham situation, patient’s pain was only reduced 8 points. In a test using a sham stimulation, and then using magnetic stimulation, patient’s perception of pain dropped 30 points after magnetic stimulation. The effects can last up to a few days, as opposed to a few hours for medicinal therapies. (NeuroReport 9 1745-1748, 1998.)
Perception of pain is as individual as each person. What works for one person may not work for another. It may be helpful for the person living with chronic pain to experiment with different therapies. It is advisable to start with the least invasive, or least expensive, therapies and go on from there. Try using ice packs before taking medication, and try medication before seeing a surgeon. The main thing to remember is that no one needs to suffer needlessly, and to keep looking until you find the pain relief that works for you!
© 1999 Karyn Moran Holton
Karyn Moran Holton is a nurse who has been diagnosed with lupus for the past 3 years, and has spent most of that time trying to raise awareness about lupus and other under-appreciated autoimmune diseases.
I found this article interesting and thought I would share it. It discusses how sleep is important not only for us lupies, but for everyone. Enjoy the reading… this article is from the summer 2010 edition of the magazine “Lupus Now”, cover story.
Sleep Easy – Why Sleep Is Critical When You Have Lupus
By Jenny Thorn Palter
Autoimmune diseases, including lupus, run in Karen Avery’s family. “My brother has discoid lupus, and I lost my cousin to lupus three years ago. She was only 42—the age I am now,” she says.
Avery was diagnosed with lupus in 1989 while in college. “I remember vividly the day I got sick; I fell asleep in class, and when I woke up my hands were blue. I stood up from my desk, and I was in so much pain, I thought, ‘I must have the flu.’ I have always had sleep issues and great difficulty sleeping at night. Plus, I wasn’t eating right, I wasn’t exercising; I was running myself into the ground,” she says.
Today, Avery is a managing director for Marsh & McLennan Companies, an insurance brokerage and consulting firm based in New York City; she runs a global consulting firm for the company. As if that were not enough, she is a new single mother of one-year-old fraternal twin girls, Erika and Eden.
Although Avery has, for the most part, been successfully managing her disease for years, she has been hospitalized four times since 1989 with lupus flares. She believes every flare was caused by a significant and prolonged lack of sleep. For her, getting the right amount of sleep is essential.
What’s in a Zzzz …?
Until the 1950s, most people thought of sleep as a passive, dormant part of daily life. We now know sleep affects our daily functioning and our physical and mental health in many ways we are just beginning to understand.
According to the National Institutes of Health (NIH), approximately 70 million people in the U.S. are affected by a chronic sleep disorder or intermittent sleep problem. NIH reports that women suffer from lack of sleep more than men do; these sleep problems increase in frequency as women age.
The 2009 Sleep in America™ poll, conducted by the National Sleep Foundation (NSF), found that compared with those in poor health, people in good health are two to three times more likely to work efficiently, exercise, and eat healthfully because they are getting enough sleep.
Add lupus to the mix, and the importance of good sleep takes on an even more important role.
Is Sleep Related to Disease?
Sleep deprivation can be harmful to the immune system. Research done through the National Institute of Neurological Disorders and Stroke has shown that neurons that control sleep interact closely with the immune system. For example, as anyone who has had the flu knows, infectious diseases tend to make us feel sleepy. This probably happens because cyto-kines—chemicals that the immune system produces while fighting an infection—are powerful sleep-inducing chemicals. Sleep may help the body conserve energy and other resources that the immune system needs to mount an attack.
Daniel McNally, M.D., a pulmonologist and director of the University of Connecticut’s Sleep Disorders Center, agrees that people with a chronic illness, especially those who live with chronic pain and must deal with sleep-disrupting effects of medications, are likely to have more sleep problems on average. “Being able to help these people with ways to sleep better may give them a bit of relief,” he says. “Here at UConn, we try to train our medical students and residents to make sleep part of their health review with the patient.”
McNally says the university’s medical school curriculum includes four class hours on sleep. “That puts the university in the top 20 percent of medical schools in the country for the amount of time spent teaching about sleep,” he says.
The NSF poll also found that only about 40 percent of Americans feel sleep is as important as exercise or eating well to overall health and well-being. Only 32 percent of those who reported having sleep problems discussed it with their physician. McNally is not surprised.
“Many of the problems with sleep come about because people take it for granted and skip on sleep so they can do ‘x’ or ‘y,’ and then wonder why they feel poorly. I’m always frustrated when someone who should be getting adequate sleep says, ‘Can’t I just take more vitamins?’ ”
How Much Sleep Do We Need?
How much sleep we need depends on many factors, including age. While teenagers need about nine hours of sleep, seven to eight hours of sleep a night appears to be the best amount for most adults. The amount of sleep a person needs also increases if he or she has been deprived of sleep in previous days. Getting too little sleep creates a “sleep debt,” which is much like being overdrawn at a bank. Eventually, your body will demand that the debt be repaid.
We don’t seem to adapt to getting inadequate sleep, either; we may get accustomed to a sleep-depriving schedule, but our judgment, reaction time, and other functions are still impaired.
What’s worse, the practice of “burning the candle at both ends” that is common—and even respected—in Western industrialized societies has created so much sleep deprivation that what is really abnormal sleepiness has become the norm.
But sleep deprivation is dangerous: Sleep-deprived people who are tested by using a driving simulator, or by performing a hand-eye coordination task, perform as badly as or worse than those who are intoxicated.
Are You Making Sure of Sleep?
When Avery decided to have her children, she vowed to take control of both her work hours and her sleep hours. To be sure to get enough sleep to prevent her lupus from flaring, Avery has implemented a variety of strategies. Read her tips for better sleep at lupusnow.org/sleep.
“Without sleep I will have a lupus flare, so sleep is critical for my overall health and well-being,” Avery says. “The quality of my life has really improved over the last six, seven, eight years, because I really took control,” she says. “I said, ‘I’m going to get more sleep, I’m going to exercise, I’m not going to be too dependent on medication, although I have to take it sometimes; I’m really going to force myself to do these things,’ and it’s made a huge difference.”
Tips for a Good Night’s Sleep
- Set a schedule. Go to bed at a set time each night and get up at the same time each morning. Disrupting this schedule may lead to insomnia. “Sleeping in” on weekends also makes it harder to wake up early on Monday morning because it resets your sleep cycles for a later awakening.
- Exercise. Try to exercise 20 to 30 minutes a day. Daily exercise often helps people sleep, although a workout soon before bedtime may interfere with sleep. For maximum benefit, try to get your exercise about 5 to 6 hours before going to bed.
- Avoid caffeine, nicotine, and alcohol. Avoid drinks that contain caffeine, which acts as a stimulant and keeps people awake. Sources of caffeine include coffee, chocolate, soft drinks, non-herbal teas, diet drugs, and some pain relievers. Smokers tend to sleep very lightly and often wake up in the early morning due to nicotine withdrawal. Alcohol robs people of deep sleep and REM sleep and keeps them in the lighter stages of sleep.
- Relax before bed. A warm bath, reading, or another relaxing routine can make it easier to fall sleep. You can train yourself to associate certain restful activities with sleep and make them part of your bedtime ritual.
- Sleep until sunlight. If possible, wake up with the sun or use very bright lights in the morning. Sunlight helps the body’s internal biological clock reset itself each day.
- Don’t lie in bed awake. If you can’t get to sleep, don’t just lie in bed. Get out of bed and do something else, such as reading, watching television, or listening to music, until you feel tired. The anxiety of being unable to fall asleep can actually contribute to insomnia.
- Control your room temperature. Maintain a comfortable temperature in the bedroom. Extreme temperatures may disrupt sleep or prevent you from falling asleep.
- See a doctor if your sleeping problem continues. If you have trouble falling asleep night after night, or if you always feel tired the next day, then you may have a sleep disorder and should see a physician. Your primary care physician may be able to help you; if not, you can probably find a sleep specialist at a major hospital near you. Most sleep disorders can be treated effectively, so you can finally get that good night’s sleep you need.
(Adapted from When You Can’t Sleep: The ABCs of ZZZs, by the National Sleep Foundation, courtesy of the National Institute of Neurological Disorders and Stroke)