Archive | FM Aware articles RSS feed for this section

Beat the heat with fibromyalgia

22 Jun

By Dana Herrera

While the warmer times of year are often a welcome change to bone-chilling winters, extreme heat can take its toll. And sunny activities and beach retreats require some extra health considerations. Keep in mind these important tips to enjoy sunny days—and warm nights—even longer.

 

Sunny Sensitivities

Fibromyalgia symptoms are infamous for changing with the weather. Humidity, rainy days, and extreme weather changes can trigger aches and pains. Though a bit of sunshine every day is a great energy booster, too much of a good thing can leave patients feeling drained and more exhausted than ever. Additionally, people with FM can be more sensitive to medications that interact with the sun.

Marla Brumbaugh, a long-time fibromyalgia and chronic fatigue syndrome sufferer from Ohio, says spring and fall—when the weather does not go from one extreme to another—are her best seasons for symptom relief. During the summer, however, extreme heat just makes Brumbaugh plain miserable.

Though most people are uncomfortable in extreme heat, Brumbaugh’s reactions are intense. “I get frequent headaches when it’s hot and humid,” she says, “and I have a higher sensitivity to bright light, noise, and even smells, which makes it difficult for me to concentrate or remember anything.”

Her multiple chemical sensitivities make Brumbaugh anxious, which can lead to her feeling depressed. “I am a full-time fine artist, spending as much time as possible working and teaching in my downtown studio. Anxiety and creativity do not mix,” she says. “Some days when it’s really hot, it’s hard to get it together to make it up to the studio.”

Sharym Ocasio-Soto of Miami finds that some of her fibromyalgia and blood pressure medications interact with the sun. “The sun causes rashes and the heat causes fatigue,” she says. “Even … while driving, my arm will get sun and I develop a rash.”

Ocasio-Soto also feels achy when the weather turns humid. Luckily, her high-blood pressure forces her to stay hydrated, a key ingredient for fighting sun fatigue.

If you plan on spending time in the sun, be sure to check your medications for a sun interaction called photosensitivity. A wide variety of medicines can cause photosensitivity, which can make us more susceptible to sunburns, rashes, and hives. Included in this list are NSAIDS (ibuprofen, naproxen), antibiotics (tetracyclines), statins, and certain sunscreen ingredients like salicylates.

Prescription medications often come with a special photosensitivity warning. However, the safe bet is to ask your pharmacist to review all your medications—even over-the-counter meds and topicals—for possible photosensitivity reactions. If you suspect a photosensitive reaction after using a certain product or medication, see your doctor immediately. Your physician may recommend an alternative medication or treatment plan.

 

Beat the Heat

“Of course, the hotter it is, the cooler you want to stay, so I want to be in the air conditioning all the time or take showers often,” says Ocasio-Soto. “The coldness of both things makes the fibro wake up and flare by nighttime.” The transition from your air conditioned house or office to suffocating heat, or vice-versa, may trigger a fibro-flare.

Planning ahead may help to avoid these situations. For example, carry a light sweater to put on before entering air-conditioned buildings or lower your air-conditioning before you transition to the outdoors. “Stay hydrated and take things little by little,” Ocasio-Soto suggests. “If you are going to swim, [for instance,] try doing it in the afternoon. This way, the water is not cold and won’t trigger your fibro.”

Mathew Roberts, a chronic pain suffer of 25 years, recently moved from Portland to Arizona to help reduce his symptoms. “I’ve got to say, I much prefer the desert,” he says. “Something about the constant drizzle and the ever-fluctuating barometric pressure [of the northwest] really got me down.”

An avid cyclist, Roberts tends to stay indoors in the summer months. “I try to stay out of the extreme heat,” he says. “I tend to get outside time only during the wee hours of the morning.” His friends tease him about how cool he keeps his house, but Roberts doesn’t mind. “If I have to be outside in the heat, I like to put an ice cold wet bandana around my neck,” he adds. “I find that there are sensitive points in the neck that, when cooled, have the effect of cooling my entire body.”

 

The Pros and Cons of Sunshine

Several recent medical studies suggest that a bit of all-natural Vitamin D (as little as 15 minutes of sun per day) can reduce chronic pain and fatigue, while improving overall mood. And the quickest way to get that boost is to head out into the sun.

Unfortunately, this can be quite a task. The use of sunscreen, living in northern climates, an increased amount of time spent indoors, and even a lack of Vitamin D-rich foods may all contribute to not meeting the government recommended 200-600 IU per day. Fortunately, more and more physicians are testing for this deficiency and educating patients on supplements and lifestyle changes that help boost our Vitamin D levels.

Today, debates are raging over the effectiveness and even the safety of some sunscreens. Though there are currently no federal guidelines for sunscreen, organizations such as the Environmental Working Group (EWG), a research-based environmental consumer watchdog, have their own recommendations.

The EWG cautions consumers against sunscreens that advertise high levels of SPF protection. Currently, the effectiveness of over 50 SPF has not been proven and there is a concern that we are staying in the sun longer with the belief that higher levels of SPF equals longer and higher levels of skin protection. And a high SPF does not necessarily mean a sunscreen protects against both UVA and UVB rays. Additionally, the EWG reports that sunscreens that use retinol or retinyl paliminate (Vitamin A), may increase the rate of skin cancer cell production. And ingredients in many sunscreen products, including oxybenzone, are suspected of causing hormone disruptions.

Generally, the EWG recommends a broad-spectrum, water-resistant, mineral sunscreen and frequent reapplication. Additionally, they advocate following basic guidelines for sun exposure similar to those given by the CDC. Their full report and sunscreen guide can be found online at http://www.ewg.org.

The debate about sunscreen is ongoing. However, the EWG sunscreen ratings may point us to some fibro-friendly products. Many of their highly rated sunscreens are free of common sunscreen chemicals we may be more sensitive to. However, before using a new sunscreen product, test it first. Apply a bit to your inner wrist to see if your skin reacts.

Warmer weather offers many beneficial impacts for pain and mood. Even if you have an extreme sensitivity to heat, there are ways to make your time outdoors comfortable—and even enjoyable. So don that hat, grab that water bottle, apply that sunscreen, and enjoy the sunny side of the season.

 

Sunny Safety

Follow these simple guidelines from the Centers for Disease Control and Prevention (CDC) to stay healthy in the heat.

  • Drink lots of water. When the body heats up, you sweat to keep cool. If you don’t replace lost fluid, you can experience symptoms of dehydration, from extreme fatigue to headaches. Tip: Reusable water bottles that clip to your purse or bag are a great way to stay hydrated on the go.
  • Stay cool running errands. The hottest part of the day tends to be between 10 a.m. and 4 p.m. Try to avoid unprotected sun exposure during these hours. Instead, plan your outdoor errands early or later in the day.
  • Cover up—not just with sunblock, but with protective clothing and hats. Tip: Pick lightweight fabrics such as linens, cotton, or even hemp. Three-quarter sleeves and pants can provide a cooler alternative to full-length.
  • At the beach, clothing designed for surfers offers some UV protection and is often water friendly. Don’t forget the beach umbrella, swimsuit cover-ups, floppy beach hats, and water shoes. And a broad-spectrum water-resistant sunscreen is essential. Just be sure to reapply often.
  • Remember to protect your eyes! Sunglasses are a must. Break out those Jackie-O shades or ask your eye doctor about transition lenses.

Sunny Checklist

A bit of planning can make all the difference in managing your symptoms. Use this checklist to consider how to prepare for your warm-weather fun—and help prevent it from triggering a fibro-flare.

  • How long will I be outdoors?
  • Do I have sun protection?
  • Can I access shade, water, and additional sun protection if I stay longer than expected?
  • Have I taken any medications that make me more sensitive to the sun?
  • Will I be outdoors during changing temperatures and/or going from one temperature to another throughout the day?
  • If I will be indoors often, can my doctor recommend ways to increase my Vitamin D?

 

 

 

References

 

Drug-Inducted Photosensitivity. Alexandra Y Zhang, MD, Assistant Professor, Department of Dermatology, University of Pittsburgh. Coauthor(s): Craig A Elmets, MD, Director of Dermatology, Departments of Dermatology, Pathology, and Environmental Health Sciences; Professor, The Kirklin Clinic, University of Alabama at Birmingham. http://emedicine.medscape.com/article/1049648-overview. Accessed June 15, 2010. Updated January, 15, 2010.

 

Environmental Working Group Full Report: Sunscreen Guide 2010. http://www.ewg.org/2010sunscreen/full-report/. Accessed June 12, 2010.

 

Grant, W. (2009). In defense of the sun: An estimate of changes in mortality rates in the United States if mean serum 25-hydroxyvitamin D levels were raised to 45 ng/mL by solar ultraviolet-B irradiance. Dermato-Endocrinology. (1)4: 207-214.

 

Onoue S, Seto Y, Gandy G, Yamada S. Drug-induced phototoxicity; an early in vitro identification of phototoxic potential of new drug entities in drug discovery and development. Curr Drug Saf. May 2009;4(2):123-36.

 

This article, “Beat the Heat” by Dana Herrera, appears in Fibromyalgia AWARE magazine, Spring 2011, Vol. 22.  Reprinted with permission from the National Fibromyalgia Association:www.fmaware.org© FM Aware All rights reserved. No material may be reproduced or used without written approval of and proper credit given to Fibromyalgia AWARE

Steering Clear of Scams

22 Nov

By Deborah Barrett, PhD, MSW, LCSW

When people suffer from problems with no easy answers, opportunity expands for quacks and scammers. While there is much helpful advice available, speculation and unscientific information about fibromyalgia and its treatments also abound. Reliable advice on ways to improve calls for patience and commitment, which can increase the appeal of easier methods, however questionable.

Caveat Emptor

The weight-loss industry provides a helpful analogy. Aside from drastic surgeries, weight loss involves a commitment of time, effort, and willpower. Nonetheless, a multibillion dollar industry profits from people in search of “easy” methods to slim down. Advertisements for ways to shed pounds without diet or exercise saturate the media. Promoters sometimes claim to be medical experts. For people desperate to lose weight, these promises hold great allure. Yet the bottom line remains: healthful and sustained weight loss comes from consuming fewer calories and exercising, and not from a pill, gadget, or cream.

The situation is similar for people with FM. At present, no miracle cure exists. Significant and sustained improvement involves behavioral changes and patience.

Dieters can benefit from advice from reputable experts about the caloric value of foods and exercises for good health, and from having a community to support their commitment. Similarly, people with FM can improve their overall experience with reliable information about treatments and social support. Deceptive gimmicks only rob us of precious money and time, and toy with our hope.

Five Red Flags

The following five “red flags” can help alert you that a practitioner or advertisement is promising more than is reasonable. These flags often cluster together, revealing an even greater likelihood of quackery.

(1) Products or practitioners that claim to cure FM

Beware of any advertisement or practitioner offering a cure for FM. When a cure is found, we will all know about it. You will not read about it in an obscure source, a “personal” email from a stranger, or an advertisement. It makes no sense that a cure for FM would stay secret, known only to the company marketing it. Doctors who often feel powerless to help patients would rejoice in having answers, and networks of FM sufferers would spread the information in a New York minute. It is common for dubious claims to be announced with CAPITAL LETTERS or exclamation marks!!!! WATCH OUT FOR SUCH TRICKS!!!

(2) Product vendors

Be skeptical of anybody promoting FM treatment products from which they will directly profit. A common justification given by vendors of multi-level marketing is that they believe in their product. Although it is possible that vendors of questionable products are not crooked, at best they are biased advisors. Included in this category are infomercials (paid advertisements that appear to be informative programs) and practitioners who profit from the sale of products they recommend. Be wary of those who sell products themselves, particularly if they cannot offer a source other than their own front desk for purchasing the remedy that they recommend.

(3) Personal testimony as evidence

Personal stories, especially those most similar to our own, can seem so convincing.—yet testimonials are lousy evidence of whether or not something works. Personal stories or testimonials are anecdotal, meaning they are based on one person’s experience, and therefore cannot speak to larger trends or alternative explanations. They follow a predictable pattern; they begin with a story about how compromised an individual had been before discovering a particular treatment—the one being advertised—and then describe a dramatic improvement, even a complete recovery. Such personalized advertisements have proliferated in books, magazines, direct mail advertisements, and on the internet. (Beware of ads disguised as personal email messages.) There’s no way to determine whether a personal story is embellished or fabricated. And even when people seem credible, they may be mistaken about what actually helped them feel better. Because symptoms of FM can fluctuate dramatically, figuring out the effects of any particular treatment requires systematic evidence and interpretation. It is that much more difficult to evaluate someone else’s experience. A “spontaneous remission” may or may not have been caused by the products being touted; and what works for one person may not for another. Reliable information comes from clinical trials in which the researchers can control for the multiple factors involved. Think critically when you encounter tug-on-the-heartstrings stories. (Testimonials also tend to include claims about a secret cure [flag #1], and tend to profit those marketing them [flag #2].)

(4) The lone scientist

Another red flag is the image of the lone scientist, who tinkers in his basement lab for years until he develops what nobody else could: the miracle cure. Do not be deceived by any statistics the lone scientist may present. It is conceivable that he has been very successful in selling his product(if he indeed exists), regardless of whether or not it works. Hope sells. Fad diets have produced plenty of millionaires, but few slender followers. The lone scientist often makes grandiose claims of cures (flag #1), refers to personal testimonies as evidence (flag #3), and claims to be persecuted by mainstream medicine.

(5) The panacea

Remember the traveling snake-oil salesmen of yore who peddled an elixir to “fix what ails you?” It is no wonder they had to keep traveling. Many of us might be willing to try a “panacea” once—fewer, twice. While some things are generally healthful—such as a balanced diet and moderate exercise—no product can treat everything. The more problems a product allegedly treats, the wider its potential market, and the more suspicious you should be. It is unlikely, as one advertisement suggests, that a treatment touted for asthma, nail biting, constipation, and a long list of other problems will help FM. Your skepticism should grow along with the length of the list of claims made.

Think Scientifically

I strongly recommend that you do not waste time, money, or precious hope on promises of a quick fix. However, if you do decide to try the latest fad or alternative treatment, the most sensible way to assess its effects is to keep systematic records of your experience. FM symptoms tend to wax and wane. A significant change in weather may be more responsible for a change in how you feel than a supplement you are trying. Therefore, before jumping to conclusions about the effects of any one therapy, give it a reasonable trial (unless unreasonable side effects develop). Make sure to check with your doctor about the safety of treatments you are considering—before you initiate them. Even “herbal” remedies can have dangerous—sometimes lethal—interactions and consequences.

—-

Deborah Barrett is a clinical assistant professor of social work at the University of North Carolina at Chapel Hill and a psychotherapist in private practice. This article is adapted from her forthcoming book, Paintracking.

This article, “Steering Clear of Scams” by Deborah Barrett, appears in Fibromyalgia AWARE magazine, Winter 2010, Vol. 21.  Reprinted with permission from the National Fibromyalgia Association:www.fmaware.org © FM Aware All rights reserved. No material may be reproduced or used without written approval of and proper credit given to Fibromyalgia AWARE

Your Best Night’s Sleep

18 Nov

The following article, “Your Best Night’s Sleep” by Tina Marie Frawley, appears in Fibromyalgia AWARE magazine, Winter 2010, Vol. 21.  Reprinted with permission from the National Fibromyalgia Association:www.fmaware.org © FM Aware All rights reserved. No material may be reproduced or used without written approval of and proper credit given to Fibromyalgia AWARE

Do you ever lie awake nights, wondering when restful sleep will sweep you away? Fibromyalgia pain can prevent you from falling asleep—yet deep sleep is vital for people with chronic health conditions. The following steps can keep you from counting sheep and put you into a great night’s sleep.

Avoid unhealthy substances. Caffeine, sugar, and tobacco stimulate the body and mind. Caffeine is a stimulant that prevents many people from falling asleep when it is consumed within hours of bedtime. Likewise, sugar stimulates the brain, keeping you awake.

While some people think alcohol will help them fall asleep, it actually does more harm than good. Alcohol consumption may initially “knock you out,” but the sleep will not be deep—and you are likely to wake up after the alcohol effect has worn off.

Prepare your bedroom. The bedroom should be a sanctuary where all you do is sleep. People who conduct multiple activities in the bedroom, such as watching television or using the computer, will have trouble separating work from sleep. Remove computers and TVs from the bedroom and use them in another room.

Taking proper care of your mattress, such as rotating and flipping it every season, is also important for keeping the bedroom prepared for optimum sleep.

Regulate temperatures. Scientific studies have found temperature plays a major role in sleeping. Cooler temperatures in the bedroom will foster good sleep. It is best to keep the room between 60 and 68 degrees Fahrenheit. The body’s core temperature should be lowered, too. (Be careful when using large body pillows as they may trap heat inside the body’s core, raising your temperature.)

No pets allowed. No matter how much you love your pet, you may have to banish it from the bedroom so its whimpering, jerking limbs, snoring, or other sleeping activities will not disturb your night’s sleep.

Use aromatherapy. Scents such as lavender and vanilla are calming to the mind. Using them can help the body relax (if you don’t have multiple chemical sensitivities, which may be exacerbated by the use of essential oils). Since leaving aromatherapy candles burning while sleeping is dangerous, add a few drops of essential oils to a room humidifier, spray the oils on your pillow, or leave the bottle open on your nightstand. Probably the most effective way to use aromatherapy is to rub small amounts under your nose and around the temples; then run your fingers across your scalp and around your neck in a relaxing self-massage.

Establish a routine. Start by deciding how much sleep you need. Set a time to fall asleep and a time to wake up. Stick to this schedule, even on weekends and holidays, so your body becomes accustomed to sleeping during those hours.

Turn down loud music and turn off televisions and computers about an hour before bed. You may wish to take a warm bath or shower also. (After you emerge from the water, your body temperature will lower, also promoting sleep.) Slip into comfortable, non-restrictive clothing before reading or doing something relaxing such as knitting or hand-sewing. Use aromatherapy and try to keep from thinking about work, in-laws, or the damage your dog did to your garden. This time is about relaxation.

The only other thing left to do is drift off to sleep.

Keep your feet warm. If your feet are cold, you might find it harder to fall asleep. Use socks or en a hot water bottle to ensure your feet are not the reason for your insomnia. A folded blanket at the end of the bed may help too.

Sleep on your right side. For people who traditionally sleep on their left side or back, this one might be a hard adjustment, but the rewards are manifold. Sleeping on your right side allows the blood being pumped from your heart to flow effortlessly throughout your body, while lying on your left side forces your heart to work harder because of the weight of the right lung placed upon it.

Similarly, sleeping on the right places less pressure on the digestive tract.

Sleep in complete darkness. Window treatments should be heavy and block out all light. Light and dark signal the brain when it is time to sleep and awaken. Allowing light into the bedroom during times you should be sleeping causes your brain think it is time to be awake.

Not all window treatments can block out everything, but wearing an eye mask can prevent almost 100 percent of light from interfering with your sleep.

Relax from toe to head. As you are ready to fall asleep, consciously relax your body starting with your toes and working your way up to your head. Include everything from knees to jaw and even eyes. You may be amazed at how much tension you are holding without being conscious of it.

Exercise regularly. This does not require mean running the Boston Marathon! Gentle exercises can be beneficial. Even allowing the body to stretch for a few moments in the morning and at night will get your blood moving and make your body feel better. Taking a gentle yoga class just once a week, for example, will give you ideas of ways to stretch at home and relax before bed. Set small goals for yourself and pay attention to how exercise makes you feel as you are doing it.

A great night’s sleep is not out of reach for people with FM. Following these simple steps will allow you to step into a restful night and wake up feeling relaxed and rested.

Sweet dreams!

Cures for the Housekeeping Blues

5 Nov

The following article, “Cures for the Housekeeping Blues” by Elisabeth Deffner, appears in Fibromyalgia AWARE magazine, Winter 2010, Vol. 21. © FM Aware All rights reserved. Reprinted with permission from the National Fibromyalgia Association: www.fmaware.org

Cures for the Housekeeping Blues Keeping house is always a chore—but for people with fibromyalgia and other chronic pain disorders, it can be the source of a symptom flare that puts them out of commission for days or even weeks. That makes it all the more important to develop techniques that help them complete their tasks without an excessive expenditure of time and energy. If your repertoire of housekeeping tricks is low, fear not: here we present tips from FM patients who have discovered ways to ease the housekeeping blues.
In the Bathroom
Relying on a small number of cleaning products not only simplifies housecleaning, it also makes life much more pleasant for people who have multiple chemical sensitivities. The trick is to find the cleanser that works best for you. FM patient Alice Hart, for instance, relies on Scrubbing Bubbles spray to clean her bathroom. “I spray it all over the toilet, sink, and tub, wipe it off with an old towel, and everything is squeaky clean and smells wonderful,” she says. “I’m done in 10 minutes.”In some parts of the bathroom, you may not even need a cleaning product. Patti Hutcheson of Tampa, Fla., makes use of shower steam to clean knickknacks and other decorative items. After she’s finished bathing, she uses a paper towel to wipe her knickknacks dry, and they look clean and fresh. She has also simplified cleaning the inside of the tub; first she scrubs the tub, then takes a shower—cleaning herself while rinsing the tub. “I clean the tub one night and then the toilet and lavatory another night,” she adds. “It’s okay to break up that tasks of the bathroom and not have to do everything at one time.”
Fetch and Carry
Marie Maier of Plymouth, Mich., has found a folding metal shopping cart indispensable. She places the cart in the back seat of her car before heading out to the grocery store, and then it’s ready to carry her groceries straight into her kitchen. She also relies on the cart to carry out bags of trash, or even suitcases when she’s heading out on a trip. She has also used it to transport her clothes to the laundry room. Laundry can be a big burden to those who are challenged by lifting, bending, and straightening. Bruce King, who lives in Seattle, ties a thick loop of nylon rope to the handle of his laundry basket; that way he can pull it easily over the carpet and into the laundry room.

“I’ve even gotten good at balancing a second basket on top of the first and inserting small plastic containers for soap, bleach, etc., in among the clothes, so I needn’t work my arms to tote them either,” he adds. Marian Chapman, on the other hand, came up with a system that helps her transport her laundry upstairs. She lifts the basket, rests it on a stair several steps ahead of her, and then climbs up to it. She repeats the process until she reaches the second floor. “It is easier to do this … than to try to carry the weight of the basket and my body weight up the stairs at the same time,” she explains.

Nancy Smith’s husband placed a small table in their laundry area, which prevents her from having to bend down to sort the clothes. When grabbing clean clothes from the drier, Smith places them in a laundry basket perched on top of another basket—so it’s raised up to a convenient height for her. She also delegates some tasks—for instance, her son or husband carries the laundry upstairs so it can be put away; or she does all the cleaning except for the carpet, and asks her husband or son to vacuum when they arrive home. “My family has found that they have more quality time with me if they help,” she explains. “The sooner we get done, the sooner we can spend time together.”
In the Kitchen
The repetitive motions required by cooking—opening jars, bending and lifting, chopping—can exacerbate FM symptoms. The good news is there are many tools and adaptative devices that can help ease these necessary tasks. To open jars, for instance, one FM patient relies on shelf-liners (the thicker, plastic kind used on shelves or beneath rugs) as well as strap wrenches. To open a jar using this method, stand the jar on a piece of shelf liner and use another piece to grip it. Then wrap the strap wrench’s grip around the lid, twist the plastic handle, and voilà: open jar. Standing at the stove to stir, or at the counter to chop, can be a massive drain of energy.

Why not sit down to complete these tasks? Place a tall stool in your food prep area, and sit on it to conserve your energy while preparing a meal. You may also wish to invest in ergonomic tools that can help ease the strain of repetitive motion. Christine Omer uses an ergonomic knife to chop vegetables. “It keeps my wrist in a better position and seems to give me more force for chopping,” she says. A long-handled “reacher” tool can also make it easier to reach items stored on high shelves.
Personal Care
Think outside the box to make everyday tasks easier for you. If your bathroom sink is so low that you have to bend to use it, for example, why not brush your teeth at the kitchen sink? If sitting causes you back pain, use a pillow or two to cushion the surface beneath you. Store things where you use them—even if that means buying multiple bottles of furniture polish, bathroom cleaners, or window cleaners.

Determine whether a warm shower helps relax you in the evening, or helps revive stiffened muscles in the morning. (Perhaps the best system for you is to shower before going to bed as well as after rising!) Maybe an electric blanket eases your pains, making it easier for you to fall asleep. (You can also fill socks or pillowcases with rice or wheat husks—be sure to stitch the ends shut—and then heat them for a few seconds in the microwave for a less expensive solution.) Above all, remember that taking care of your house means also taking care of yourself. Monitoring your energy level and staving off flares by using tools and creative thinking will help you feel better—and keep your home looking great.

Fibromyalgia and Osteoporosis: What’s the overlap and what can you do about it?

3 Nov

The following article, “Fibromyalgia and Osteoporosis” by Stuart L. Silverman, MD, FACP, FACR, appears in Fibromyalgia AWARE magazine, Winter 2010, Vol. 21.  Reprinted with permission from the National Fibromyalgia Association: www.fmaware.org © FM Aware All rights reserved. No material may be reproduced or used without written approval of and proper credit given to Fibromyalgia AWARE.

FIBROMYALGIA AND OSTEOPOROSIS
By Stuart L. Silverman, MD, FACP, FACR

It is perhaps not surprising that individuals with fibromyalgia may be at risk for low bone mass and osteoporotic fracture. Fibromyalgia is a common disease affecting 2-3 percent of the female population, while osteoporosis affects 44 million Americans, or 55 percent of people age 50 and older. Of the 10 million Americans estimated to have osteoporosis, 8 million are women and 2 million are men. Risk has been reported in all ethnic and racial groups.  Osteoporosis is simply a condition in which the bones become weak and then can break from minor falls or trauma. It is a disease characterized by low bone mass and changes in bone strength, leading to increased risk of fracture. One in two women will have an osteoporosis-related fracture after age 50.

Who Is At Risk?
Individuals with fibromyalgia start off by having the same risk factors as the general population for low bone mass and osteoporotic fracture.  These risk factors include age, prior fracture after age 50, use of cortisone, history of rheumatoid arthritis, three or more alcoholic drinks per day, current smoking, osteoporosis associated with a medical condition or medication, and parental history of fracture. However, there are also specific risk factors that are associated with fibromyalgia. These include lack of physical activity, low vitamin D exposure, depression, and medication. Due to chronic pain, patients with fibromyalgia may decrease their activity. This decreased activity or mobilization leads to lower bone mass.  Individuals with fibromyalgia may be homebound, resulting in low sun exposure with subsequent low levels of vitamin D, which is important for muscular health and balance. Low vitamin D has also been associated with poor quality bone. Fibromyalgia patients may also have depression, which is associated with decreased bone density. However, patients with depression may also take medicines such as serotonin reuptake inhibitors including Prozac, Paxil, and Zoloft, which have been found to be associated with increased risk of osteoporotic fracture. The reason for this association is not clear, but may be due to serotonin, which directly affects the gut, the brain, and bone.   A great starting point is to ask your healthcare provider about your bone density. A central bone density test of the spine or hip can provide valuable information to your healthcare provider. Osteoporosis is defined as a bone density T score of -2.5 or lower in the spine or hip; this means that you have a bone density which is at least 2.5 standard deviations below that of an average young adult. If the T-score is between -1 and -2.5, you have low bone mass, or what we formerly called osteopenia.  Not all patients with low bone mass are at high risk; you must take into account the risk factors noted above. To calculate your risk, your healthcare provider can use a FRAX™ calculator, which takes data from bone density and clinical risk factors to generate information about your 10-year risk of major osteoporotic fracture—hip, shoulder, wrist, and clinical spine—and hip fracture.

Calcium and Vitamin D
Vitamin D plays an important role in protecting your bone; your body requires it in order to absorb calcium. The National Osteoporosis Foundation (NOF) recommends currently that adults get 400-800 international units of vitamin D daily, and that adults aged 50 and over get 800-1000 international units daily. (Some people will need more.)  You can get vitamin D through sunlight, food, supplements, and medication. Your skin may get vitamin D through ultraviolet rays and sunlight. People with fairer skin may make more vitamin D than people with darker skin. People who are homebound and do not get outside, into the sunlight, are unable to make vitamin D. As we age, our ability to make vitamin D decreases. Because of concerns about skin cancer, many of us will stay out of the sun, cover up, or use sunscreen or sunblock, which will limit the ability of the skin to make vitamin D. Vitamin D is available in few foods, so most of us will need to take a supplement. (Make sure you check your calcium supplement to see if it contains vitamin D as well.) The best way to find out if you are getting enough vitamin D is to do a simple blood test called 25-hydroxy vitamin D. Recommended levels should be 30 ng/mL or higher.  Calcium is needed for your heart, muscles, and nerves. According to the NOF, adults under age 50 need 1000 mg of calcium daily, and adults age 50 and over need 1200 mg of calcium daily. If you have trouble getting calcium from your food, you may take a calcium supplement.

Fibromyalgia, Osteoporosis, and Pain
Fibromyalgia results in chronic widespread pain, while patients with osteoporosis may have regional pain due to fractures, such as a compression fracture, osteoporotic fracture of the spine, and microfractures of the spine.  Several years ago, my colleague, Dan Wallace, MD, and I recognized that some patients with multiple osteoporotic fractures had developed widespread pain secondarily, and that other patients with fibromyalgia experienced worsening FM pain due to regional pain following osteoporotic fractures. We recognized the importance of preventing osteoporotic fracture and also reducing pain, which may act as a trigger.

Treatment
NOF guidelines recommend that we treat patients with hip or vertebral fracture or osteoporosis at the spine or hip (determined by T-score of -2.5 or below), and patients with low bone mass who are at high risk. The FRAX calculator helps us distinguish between low bone mass patients and high risk patients. Patients who have a 10-year absolute risk of hip fracture of three percent or more, or major osteoporotic fracture of 20 percent or more, are recommended to be treated.  Although there is no cure for osteoporosis or for low bone mass at high risk, it can be treated. There are two basic types of medicine: antiresorptive medicine, which reduces the rate of bone loss, and bone-forming medications.  Antiresorptive medicines include bisphosphonates, which are available orally and intravenously. Oral bisphosphonates include generic alendronate (brand name Fosamax) and Fosamax plus D, as well as Boniva and risedronate (brand name Actonel). Intravenous bisphosphonates include zoledronic acid (brand name Reclast) and ibandronate (Boniva).  Other medicines that prevent bone loss include calcitonin nasal spray (known as Fortical or Miacalcin) and estrogen agonists/ antagonists such as raloxifene or Evista. Estrogen is approved for prevention of osteoporosis, but according to the U.S. Food and Drug Administration, postmenopausal women should consider other medicines before taking estrogen or undergoing hormonal therapy because of the risks associated with these treatments. There are also bone-forming or anabolic medications such as parathyroid hormone (Forteo), which is for treatment of women who are at high risk for fracture. It is available as a daily injection.

Conclusions
Individuals with fibromyalgia may be at risk of osteoporosis and osteoporotic fracture—particularly postmenopausal women who have low bone density or clinical risk factors. Individuals with fibromyalgia should talk with their healthcare providers about whether they need a bone density evaluation and whether they are at increased risk and need treatment. All people need calcium, vitamin D, and exercise throughout their lifespans to optimize bone health. Individuals with fibromyalgia may be at increased risk depending on presence of clinical risk factors.

Dr. Stuart Silverman is Clinical Professor of Medicine at UCLA. His clinical practice is based at Cedars-Sinai where he sees rheumatology patients and has a special interest in fibromyalgia, chronic fatigue, myofascial pain syndromes and osteoporosis.

Resources
A good starting point is the National Osteoporosis Foundation (NOF) website: www.NOF.org.  The NOF also provides information about FRAXTM at www.NOF.org/FRAX_update.htm, and about vitamin D at www.NOF.org/vitaminD.htm.

The National Osteoporosis Foundation recommends five steps to optimize bone health and prevent osteoporosis.

  1. Get daily recommended amounts of calcium and vitamin D.
  2. Engage in regular weight-bearing and muscle strengthening-exercise.
  3. Avoid smoking and excessive alcohol.
  4. Talk to your healthcare provider about bone health and have a bone density test.
  5. Take medication when appropriate.

“New discussions will lead to better outcomes for patients”

9 Sep

The following is reprinted from the  “Editor’s Letter” by Lynne Matallana, appearing in the latest issue of Fibromyalgia AWARE magazine

Dear Friends,

Over the past few months it has become extremely apparent that we are entering an exciting new time in the field of fibromyalgia. Recent research developments are changing our understanding of the disorder, its relationship to other illnesses, its underlying causes, and the most effective treatment options to insure safe and effective symptom reduction while producing improvements in patients’ overall level of wellness.

I believe that these new discussions will lead to better outcomes for patients, but it is important to recognize that change usually does not happen quickly or without debate—and the need for further analysis is imperative. For example, the proposal to change the diagnostic criteria for fibromyalgia (see page 19) has resulted from clinicians’ frustrations with the existing 1990 ACR criteria.

The currently accepted diagnostic criteria for fibromyalgia—which were established as a tool for clinical research—have not worked as well in the clinician’soffice. The Manual Tender Point Exam has played an important role in the diagnosis of fibromyalgia when identifying patients for clinical trials and research studies; but its use has caused some frustration when doctors have to stick to its stringent parameters when evaluating patients in their clinics. If a person has a history of widespread pain and presents tenderness above and below the waist and on both sides of the body for a period that exceeds three months, as defined by the existing ACR criteria, is it nevertheless unacceptable to give a diagnosis of FM if he has only 10 tender points, rather than the 11 required for a diagnosis of FM? Most healthcare providers have found it necessary to use their medical and diagnostic skills to make a decision on whether or not to give such a person a fibromyalgia diagnosis.

As you will discover in this issue’s cover story, “A Farewell to Tender Points?” two of the foremost experts in the study of FM have differing opinions on the acceptance of the new diagnostic criteria, proving that potential changes of this magnitude must be carefully evaluated and discussed, and that all aspects—both pro and con—on the subject must be addressed prior to the change being accepted. I don’t think anyone with FM would disagree that we would like to see a better way to diagnose FM; however, these proposed criteria must be carefully scrutinized prior to any final decisions being made.

Receiving a diagnosis of fibromyalgia is important because it helps patients understand what disease state they are dealing with—and it also helps the healthcare provider determine the most effective treatments to reduce symptoms. It also helps to ensure that patients aren’t being given medications or advice that isn’t applicable to their disorder.

So, yes, this is an exciting time because we are asking new questions and discovering new answers to issues that we didn’t before; but we must also remember to maintain diligence and remain cognizant of the need to fully evaluate new ideas in order to move our agenda forward: to have the best practices in place in order to help people with FM.

Best wishes,
Lynne Matallana
President/Founder, National Fibromyalgia Association
Publisher, Editor-in-Chief, Fibromyalgia AWARE

Click here to read Fibromyalgia AWARE digital version or to order the print copy.

In Search of Restorative Sleep

3 Aug

The following article, “In Search of Restorative Sleep” by Elisabeth Deffner, appears in Fibromyalgia AWARE magazine, Spring 2010, Vol. 22. We invite you to share this article free-of-charge in your blog, website or any other educational and social media venues. We request that you include the following credit line with the article: © FM Aware All rights reserved. Reprinted with permission from the National Fibromyalgia Association: www.fmaware.org

Joyce Gillette was familiar with the symptoms of fibromyalgia, lupus, Sjogren’s, and the other conditions she’d been diagnosed with–and she knew how to manage them.

Except for her sleep trouble.

“I was tired all the time,” recalls the Southern California resident. She figured it was part and parcel of fibromyalgia, a diagnosis she’d received in the late 80s. But, her doctor wasn’t as sure as she was, and urged her to do a sleep study.

On that point, Gillette was firm. Absolutely not, she told her doctor. “I don’t want any more diseases,” she said.

But, after a few years of going back and forth on the issue, she gave in–and discovered she did have another diagnosis: sleep apnea.

“I was having 48 episodes of apnea in an hour,” she says. “I said, ‘Geez, no wonder I’m exhausted all the time.”

Continue reading the story in Fibromyalgia AWARE magazine. The digital issue is free for registered subscribers.

Get a Better Night’s Sleep

  • Maintain a bedtime routine.  Try to go to bed the same time each night and get out of bed at the same time each morning, conditioning your brain to know when it’s time to sleep.
  • Don’t sleep excessively during the day. Naps should be less than half an hour long, so you don’t have enough time to enter REM-stage sleep. If you nap too long and do enter this stage of sleep, you may have trouble falling asleep at night.
  • Check your diet. Eliminating certain foods may help improve your sleep. Don’t forget to consider what you’re drinking. Remember that caffeine stays in your system six to eight hours after you consume it, and it does fragment sleep.
  • Don’t use alcohol for help falling asleep. As the alcohol is absorbed into the system, the body goes through a mini-withdrawal that fragments and destroys the second half of sleep.
  • Eliminate stimulants, including tobacco.
  • Turn down the lights. Excessive light exposure in the evenings may prevent your body from releasing the melatonin that makes you feel sleepy. Light exposure not only refers to lamps and other lighting, but also to television and computer screens. And, if you need to get out of bed during the night, try not to turn the lights on–you may inadvertently fool your brain into thinking it’s daybreak, and time to wake up.
  • A warm bath will help you relax–and cooling down afterward will help prepare your body for the induction of sleep. Be sure to wait at least an hour after your bath to go to bed, so your body temperature has a chance to go down.
  • Arrange your bedding surface so it offers you the most comfort, especially if pain tends to keep you awake.
  • If you’re having trouble sleeping, get out of bed–but don’t immerse yourself in an activity that requires a lot of concentration. Go to another room (be sure it’s not brightly lit) and listen to some music or do another relaxing activity. When you start to feel sleepy, head back to bed.

Genetics Link Overlapping Conditions

27 Jul

The following article appears in Fibromyalgia AWARE magazine, Spring 2010, Vol. 22. We invite you to share this article free-of-charge in your blog, website or any other educational and social media venues. We request that you include the following credit line with the article:  © FM Aware All rights reserved. Reprinted with permission from the National Fibromyalgia Association: www.fmaware.org 

 

Genetics Link Overlapping Conditions

Many people with fibromyalgia also experience migraine and depression; now a study from the Netherlands reports that these two seemingly unrelated conditions may share a genetic component.

Researchers undertook this investigation upon noticing that migraine and depression co-occur with greater frequency than is to be expected by chance—and that the relationship goes both ways: people with migraine are at increased risk of developing depression, while people with depression have an increased risk of migraine.

For the study, data was collected on more than 2600 people, all of them descendants of 22 couples who lived in a particular Dutch town in the last 50 years of the nineteenth century. Using this data, the researchers found that genetics explained 56 percent of the migraine cases (360 people in the study had migraine). Genetics also explained 96 percent of the cases of migraine with aura, in which the headache is preceded by flashes of light (151 of the study participants had migraine with aura). In addition, investigators found that migraine patients have—at least partly—a genetic predisposition for depression.

Researchers noted that while genetics may play a part in both conditions, it is possible that they are only triggered by an environmental trigger.

Investigators have also been looking at genetics in relation to FM. For more details, read “What’s In a Gene?” on page 8 of Fibromyalgia AWARE magazine. The digital issue is free for registered subscribers.

Up the Down Staircase: Dealing with Fibromyalgia-Related Thoughts of Suicide

9 Jul

The following article first appeared in Fibromyalgia AWARE magazine, Winter 2008, Vol. 18. We invite you to share this article free-of-charge in your blog, website or any other educational and social media venues. We request that you include the following credit line with the article:  © FM Aware All rights reserved. Reprinted with permission from the National Fibromyalgia Association: www.fmaware.org 

Up the Down Staircase: Dealing with Fibromyalgia-Related Thoughts of Suicide
By Kenneth France, PhD

Fibromyalgia is both physically and mentally taxing. If the demands seem too much to bear, patients may feel a sense of despair accompanied by thoughts of suicide. Even when feeling so desperate, most individuals would prefer a solution other than death. It can be challenging, though, to change the direction of one’s thinking. For those who find that challenge too difficult and instead continue in a downward spiral, the result may be a premature death.

Whether or not a person eventually dies by suicide, simply having thoughts of killing oneself is troubling. In fact, such turmoil occurs fairly frequently. Among individuals with chronic pain, there is research indicating that as many as one in three have had recent thoughts of suicide. That is an important finding because, as is also true for those without persistent physical pain, the best predictor of life-threatening behavior among individuals with chronic pain is whether the person is thinking about ending her or his life.  

Often there is interest in knowing “signs” of such thinking in others. The surest and best way to discover the presence of suicidal thinking is simply to ask whether the person is having thoughts of suicide. Such thinking frequently develops in conjunction with depression and with viewing the painful condition as a catastrophic and hopeless situation. It is easy to understand how individuals can become susceptible to suicidal thinking if they feel profoundly discouraged and tired, while also believing they are utterly helpless to improve what they perceive to be overwhelming circumstances.

The good news for individuals with fibromyalgia is that when such devastating thoughts occur, they rarely last. Among those who have thoughts of suicide, most choose life rather than death, and of those who do engage in life-threatening action, most survive the episode. Having come through such a turbulent time, many can take heart in having eventually handled dire circumstances. If they again face similar difficulties, they can recall how they successfully coped before and can have realistic confidence in their ability to persevere again.

For individuals dealing with fibromyalgia, though, there may be a question as to how safe one can be from future thoughts of suicide. A common analogy is that our ability to predict suicidal thoughts is similar to predicting the weather. We can predict the weather one minute from now with great certainty, one day from now with some certainty, and one month from now with almost no certainty. Consequently, one probably can never be guaranteed a future free of suicidal thinking. The more important issue is, “How will I respond to suicidal thoughts that may come my way?”

If I am thinking about death as an option, I am in a situation that is similar to past times in my life when I have confronted circumstances that seemed both intolerable and unsolvable. So I need to ask myself, “How have I handled such situations?” The answer may contain the seeds for dealing with current thoughts of suicide in ways that are not life-threatening. Life-promoting growth is likely to result when those seeds involve adaptive coping, rather than maladaptive efforts that set me up for future difficulties.

Each person is unique, but some commonly used responses to seemingly overwhelming challenges include: (1) seeking meaning in my religious faith, (2) connecting with those who know me well, and (3) arranging appropriate professional help. (These efforts are likely to have the greatest impact if I come to feel that I am understood, that I am cared for, and that I am in a trustworthy relationship.)

There is empirical evidence to support each of those three types of responses. (1) With regard to religious faith, chronic pain patients who pray tend to have less suicidal thinking than those who do not pray. (As noted above, the use of any particular way of coping is an individual matter. What seems logical and useful to one person may not be a good fit for another. Such variance characterizes all of the research mentioned in this paragraph.) (2) When it comes to seeking out and using social support, research has demonstrated how important relationships can be. For instance, one study found that among chronic pain patients who had made plans to kill themselves, the most common reason for not acting on those plans was their families. (3) Professional caregivers can also play a role, and it may be advisable to get the full range of professional help that is needed. Research has shown that compared to fibromyalgia patients receiving standard care from one medical provider, patients receiving multidisciplinary care typically experience better short- and long-term gains regarding pain intensity, days of pain, hours of pain, mood, and activities of daily living.

Despite the benefits commonly associated with necessary and appropriate professional care, some individuals with fibromyalgia do not use available professional resources. Research suggests that one of the primary reasons for such inaction is viewing the consequences of fibromyalgia as not requiring treatment because they are a normal part of life. There may be some situations in which such thinking is adaptive. That is clearly not the case, however, if there has been an absence of professional care and things have become so distressing that the individual is considering suicide. A downturn like that means it is time to become more open to seeking professional help.

If my past struggles have not led me to discover resources that I want to use again, then I need to think about new possibilities. One of the most frequently used approaches for discovering such options is “word of mouth.” In my search for possibilities I can reach out to my faith community, my family and friends, or trusted professionals, and seek input on where to find new resources to try.

What if both my past coping attempts and my word-of-mouth efforts do not give me the results I want? I might want to try some publicly available sources of information. Although such resources do not include personal endorsements from people I know, they can provide contacts that I eventually judge to be useful. For example, on a national level, both the American Association of Suicidology (www.suicidology.org) and the National Fibromyalgia Association (www.FMaware.org) provide information that is easily accessible on the internet. Locally, I might contact a crisis intervention program or an organization that provides information and referral services.

If I have fibromyalgia and am suicidal, I probably am depressed. So I need to be evaluated for depression, and, if I have that mood disorder, I need to receive effective treatment for it. The exact nature of such treatment is something for me to discuss with appropriate professionals.

If I have established contact with a mental health professional whose scope of practice includes both depression and suicidality, I should be able to openly and honestly share my pain and discouragement with that person. In straightforward ways we should explore my challenges and the emotions associated with them. Eventually we should develop goals to strive for, as well as realistic plans to help me move in those directions. I should have a sense that we are approaching my dilemma as a team, and that there are areas in which I really can make progress.

Finding the right kinds of help sometimes is a trial-and-error process. If I persevere, however, I can be sustained by the hope that my efforts will ultimately result in obtaining resources that meet my needs.

Despite my best efforts, it may take a while to secure the help I need. If I continue to have suicidal thoughts during that quest, there four self-care questions I need to ask myself.

(1) Is my physical condition getting appropriate attention? Since my physical state is one of the primary challenges I’m facing, there may be limits on what can be done. Nevertheless, I should continue to use medical and rehabilitation care that has been available to me.

(2) On the issue of deciding whether to live or die, am I giving fair consideration to the option of choosing life? It may be easy for me to come up with advantages of being dead and disadvantages of being alive, but I also need to spend time considering advantages of being alive and disadvantages of being dead. When I hit upon life-promoting thoughts that resonate with me, I need to make note of them. Later, if I feel the pressure of death-promoting ideas, I can make a conscious effort to turn my focus to those previously identified life-promoting beliefs. If they are not sufficient to change my attitude, I may need to simply muster the courage to postpone any plans for harming myself so that I can first have in-depth discussions with a professional regarding the pros and cons of life and death.

(3) Have I decreased the availability of lethal means for harming myself? For example, if I have firearms in my home, I need to arrange for them to be safely taken to a secure location where I will not have access to them. And if I have medications, their storage and my use of them should be monitored by a third party.

(4) To the extent possible, am I bringing my problem-solving abilities to bear on issues that I do have some control over? In many instances, I can think through a problem and recognize my feelings associated with it, consider options (including things I’ve tried that might be modified or tried again, things I’ve thought about trying, and new possibilities), create realistic plans, engage in planned tasks, and make adjustments as necessary.

With regard to confronting thoughts of suicide, hopefully the previous paragraphs have provided some helpful ideas. Still, you may want more. If that is the case, you might want to consider how past generations have viewed the dilemma of choosing life or death in the context of longstanding physical and emotional suffering. For instance, in Jewish and Christian traditions, there is some memorable guidance in the story of Moses at a point when the people of Israel have suffered in the wilderness for a long time. They are all experiencing physical distress and many have become profoundly discouraged. Recognizing both their challenges and their desperation, Moses says to them, “…I have set before you life and death, blessings and curses. Choose life so that you and your descendants may live….”

If you have religious faith, you can think of God’s love for you despite the “curses” you are now facing. Whether or not you believe in God, you might consider the contributions you can continue to make by choosing life. It is life’s opportunities for such giving that enable many of us find meaning, significance, and courage.

Dr. Kenneth France is a Professor of Psychology at Shippensburg University of Pennsylvania and is the Training Coordinator for the STAR (Steps Toward Advocacy and Recovery) Warm Line in Carlisle, Pennsylvania.

If you are—or someone you love is—in crisis and you need immediate help, please call the National Suicide Prevention Lifeline: 1-800-273-TALK (1-800-273-8255).

For more information, go to www.suicidepreventionlifeline.org.

Follow

Get every new post delivered to your Inbox.

Join 1,112 other followers