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| January 2009 eNews Alert |
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Earlier this month, the Food and Drug Administration (FDA) finally gave their approval for Savella (the brand name for milnacipran). A recap of the research and fibromyalgia (FM) clinical trials on this drug is included in our Latest News section, along with comments about side effects and who might be most likely to respond to Savella. While new medications tend to capture lots of attention, several interesting reports have appeared in the medicals journals this month. For those of you who struggle with balance (other people think you are drunk, drugged, or just clumsy ), research shows that your symptoms are real and likely associated with your FM. And if you are going to have surgery, talk to your doctor about taking over-the-counter melatonin to ease post-op pain ... nightly doses may relieve your pain-related anxiety too. Early menopause and shallow (light) sleep could be just two of many factors that compound your FM symptoms. |
In this eNews Alert: |
| Savella (milnacipran) FDA-Approved for Fibro | The Food and Drug Administration (FDA) on Jan. 14, approved Savella as the first drug specifically for the treatment of fibromyalgia ... and not just the pain. During clinical trials, the Fibromyalgia Network has been referring to Savella as its study name “milnacipran” in Fibromyalgia Network Journal articles. While two other medications have been given FDA approval for treating fibromyalgia pain, they were already available on the U.S. market for other medical uses. Find out if you are a good candidate for Savella, its common side effects, and other useful tips on the Latest News Section of our website. |
| Impaired Balance Not Imagined | If you sense that your balance or postural stability is not what it should be, a study by Kim D. Jones, Ph.D., and her research team at Oregon Health & Sciences University in Portland, may validate your lack of confidence in performing coordinated movements.* She compared various balancing skills in a group of 34 fibromyalgia (FM) patients with the results obtained from 32 healthy age- and gender-matched controls. She also asked all participants to list their number of falls in the past six months and to fill out a questionnaire that assessed how confident they were with their balance abilities. All participants completed the Balance Evaluation-Systems Test (BESTest), which involved a variety of measurements while subjects were sitting, standing, or walking. For example, it looks at how far you can lean forward or sideways without falling over, how fast you can move or turn, how well you can stand on one foot or your tippy toes, etc. The BESTest is a very thorough evaluation that consists of five categories, and the results for each are added together for a total score (the maximum or perfect score is 100). FM patients scored significantly worse on the BESTest compared to the controls, where the average FM total was 85.37 and the average for the controls was 94.27. In fact, the values for the five categories that measured different aspects of balance were all significantly lower for the FM group. Looking at the results a different way, 50 percent of the FM patients had balance scores below 90 compared with only 4 percent of the healthy controls. And the patients were aware of their balance problems. The survey that participants filled out indicated that 69 percent of the FM patients, but none of the controls, lacked confidence in their balancing skills. The three specific tasks of the BESTest that gave FM patients the most trouble were:
More severe FM symptoms correlated with a poorer score on the BESTest. Breaking down the symptoms that appeared to be most related to balance included fatigue, stiffness, and anxiety/depression. In other words, pain was not a factor. However, the balance difficulties in people with FM did translate into a greater number of total falls during the previous six months: 37 for the FM group and six for the healthy control group. What could be the cause of impaired balance in FM patients? The authors point out that weakness, reduced flexibility, and excess body weight could contribute to poor balance control, but these are not likely to explain the study findings. Body weight was controlled for in the analysis, and all patients were strong enough to walk independently. They also had strong enough ankle muscles to stand on their toes as long as they held onto a bar to assist with balance. People use their eyes, ears, and sensory input from their muscles to coordinate their balance. The authors speculate that a dysfunction in the brainstem regions that control for eye movement, auditory processing, and the muscle circuitry that maintains posture could be responsible for impaired balance in FM. But the good news is that muscle training activities have been shown in other studies to improve balance in people with FM. See the April 2008 issue of the Fibromyalgia Network Journal for techniques to improve posture and gait, and the July 2008 issue for improving your balance and mobility. You may also find the Wii Fit board described in the January 2009 Journal as a fun way to improve your balance. * Jones KD, et al. J Clin Rheumatol 15(1):16-21, 2009. |
| Melatonin Eases Surgery Pain |
If you are scheduled for surgery, even an out-patient procedure, the thought of needles and incisions is bound to cause a rise in your stress and anxiety levels. This in turn will increase the amount of post-operative pain you experience. Currently, you may be given a tiny dose of clonidine prior to surgery because it works to calm you down, reduces the incidence of post-op shivering, and lowers your body’s oxygen demands during recovery from the anesthesia. However, a new study shows that melatonin taken the night before surgery and just prior to it, can also relieve anxiety and reduce your need for post-operative pain medication.1 Melatonin is a hormone naturally produced every evening by your brain to help you fall asleep and when taken as a supplement (sublingually or orally), it is sedating. But recent studies on melatonin shows that it does more than make you sleepy, which is why Dr. Wolnei Caumo’s research team in Brazil decided to evaluate the inexpensive hormone for aiding with surgical procedures. Fifty-nine women undergoing abdominal hysterectomy were divided into three treatment groups: melatonin, clonidine and placebo. All subjects took a pill the night before surgery and again one hour prior to surgery, with the placebo being just a sugar pill. Participants received a spinal epidural for anesthesia during the operation and were given morphine post-surgically with the aid of a patient controlled analgesia (PCA) pump (in other words, the patients could squeeze a button to receive the amount of morphine they needed to control their pain). The amount of morphine consumed by each group at various time intervals post-surgically was compared to determine if melatonin was as effective as clonidine. Naturally, the people receiving the placebo experienced higher levels of post-op pain during the first 48 hours, presumably due to higher levels of anxiety. The placebo group also consumed significantly more pain-reliever than the patients in the other two groups. The effectiveness of melatonin mirrored that of clonidine for controlling pain, reducing anxiety, and decreasing the amount of morphine consumed. In fact, the authors speculate that the combination of the two agents may produce a synergistic response to relieve surgery pain better than either one alone. Analyzing each patient’s anxiety scores before and after the operation, those who had more anxiety tended to benefit greater from the pre-op medication (either melatonin or clonidine). This finding was no surprise, but you may be wondering, “Even if I am not having surgery, could melatonin help with my fibromyalgia pain?” The authors point to animal studies that show melatonin produces an analgesic effect, but no published treatment trials exist for people with chronic, painful conditions like fibro. However, one study last year did look at the concentration of the urinary melatonin metabolite (aMT6s) in people prone to migraine headache.2 When patients were experiencing headache pain (not before or after), there was a significant drop in urinary aMT6s. If you feel too stressed to fall asleep at night, you may see if a simple over-the-counter dose of melatonin calms you down. Alternatively, if you are prone to migraines, you might see if this reduces their frequency of occurrence. Chart your symptoms to help determine if your generalized fibro pain or migraine headaches are less after a month’s use, but avoid taking melatonin during the day because it’s sedating. Regular daytime use of melatonin will also mess up your body’s sleep clock. 1. Caumo W, et al. J Pain 10 (1):100-108, 2009. |
| Early Menopause & Hysterectomy ...high rates in FM women |
Men and children both develop fibromyalgia (FM), so this condition cannot possibly be caused by too little estrogen. However, if you have been to a fibro support group and were struck by the high incidence of women who have had a hysterectomy or developed early menopause (before the age of 46), a recent report validates your observation.* Survey questionnaires were given to 115 postmenopausal FM patients seen consecutively at an outpatient rheumatology clinic in Turkey. The results from the survey were compared to those obtained from 67 consecutive postmenopausal rheumatoid arthritis (RA) patients attending the same clinic. The average age for each group of women with a chronic, painful condition was 55. Scores for pain, fatigue, and sleep disturbance were similar between the two groups, but the incidence of early menopause and hysterectomy differed significantly. Early menopause occurred in 38 percent of the FM group compared to 13 percent of the RA group. The frequency of hysterectomy was 16.5 percent in the FM group compared to 6 percent in the RA group. The authors of the study comment that the Women’s Health Initiative reported increased incidence of symptoms including pain, fatigue, and depression after the abrupt discontinuation of hormone replacement therapy. So it is possible that estrogen deficiency may be one of many factors contributing to the intensity of FM symptoms, but is not likely to be the cause. * Pamuk ON, et al. Clin Rheumatol [epub ahead of print] January 24, 2009. |
| Light Sleep Leads to Brain Fog |
When people are deprived of sleep, their memory and learning abilities are not as sharp as they otherwise might be. However, what if you get eight hours per night of sleep but you are a “light” sleeper (i.e., your sleep is shallow). If you were to have a sleep study performed, you would probably be told that your sleep efficiency is good, so if your brain is behaving a bit foggy lately, it doesn’t have anything to do with your sleep. But is that really true? A study involving 13 healthy, well-sleeping adults (average age 60) were subjected to a mild noise disturbance throughout the night to reduce the amount of time spent in the deepest level of sleep.* None of the subjects were aroused by the noise, so their sleep efficiency (the percent of time spent asleep) remained very good. A memory performance task that involved learning information from flash cards the night before sleep and then recalling the cards the next morning was given to all subjects. The results from this test with shallow sleep were compared to the results obtained from the same subjects when they were allowed to sleep naturally (deep sleep). The influence of one night of shallow sleep produced a 30 percent drop in the memory performance task. Clearly, light or shallow sleep is not good for the cognitive processes and may possibly be why people with fibromyalgia have memory/concentration difficulties. * Van Der Werf YD, et al. Nature Neuroscience 12(2):122-123, 2009. |
| Have you Taken the Sleep Survey? |
If you have not already completed the Sleep Survey distributed by e-mail on January 15, you still have time to fill it out. For this survey, the Fibromyalgia Network is interested in learning how you COPE with sleep, regardless if you are taking medications or not. Most patients who take sleep medications still have sleep issues, as medications often do not work very well for many patients. Since we have done surveys on medications for pain, sleep, etc. in the past, we excluded questions that ask specifically about sleep meds almost entirely. So regardless if you are taking medications (which almost all FM patients are), you may still have sleep problems that you have to cope with on a regular basis. That's what the survey will ask you about. Consider your average night of sleep when filling out the survey. Your input on how you prepare for sleep, cope when you wake up at night, or your choice of sleep bedding, and more could help other patients. In addition, information provided by others could help you. Your participation is highly valued. The results of the survey will appear in an upcoming issue of the Fibromyalgia Network Journal. Click here to start the survey. As usual, all information contained in this survey is anonymous. |
| Get the Most Out of Your Membership |
The Fibromyalgia Network wants to remind you that as a Member you are entitled to many benefits and we encourage you to take advantage of them. Please feel free to ask questions from experts in the field, and give input on surveys that other Members can benefit from. Your one-year Membership entitles you to all benefits that include:
While the economy struggles, the Fibromyalgia Network continues to offer all of its Member benefits at the same low price of $28 a year. We consider you an integral part of a family of patients united together to help each other achieve the quality of care that you deserve. Take advantage of all your Member benefits. |
| New Support Groups |
Fibromyalgia Network wishes to welcome 22 fibromyalgia/chronic fatigue syndrome support groups that we have added to our referral list this month. For additional information please call our toll-free line at (800) 853-2929 or contact us at groups@fmnetnews.com. We know it can be difficult to get a new group off the ground and we wish to promote those just starting so all Members in the area can benefit. If you e-mail or call us for information about a support group in your area, please specify your location in terms of the nearest major metropolitan city. If you have been searching for a nearby support group, check our list of new groups to see if one has formed in your city. This link to new groups is temporarily available only for Members of the Fibromyalgia Network only. |
If you are having trouble staying upbeat and optimistic, please review the advice provided by psychologist and FM patient Patricia McCloskey Panfile, M.S., in the January 2009 issue of the Fibromyalgia Network Journal. Everyone deserves a “pick-me-up” now and then! Warmest regards, Kristin Thorson & the Staff of FM Network |
| To remain unbiased, we do not accept endorsements, advertisements, government funds, or pharmaceutical industry grants. Articles are for informational purposes only. You must consult your physician for treatment. Fibromyalgia Network ... Helping Patients Since 1988
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