Category Archives: Fibromyalgia

Staying Well This Flu Season When You Have Fibromyalgia or Any Other Chronic Pain Condition

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It was the sickest I’ve ever been.
The first Monday in December of 2003 started off fairly ordinary, but quickly devolved into a medical nightmare. I remember getting up at 4:30, as is my custom, and sitting in meditation for half an hour, after my morning dose of tramadol. The theory is that while I meditate, the tramadol and the acetaminophen I take with it begin to reach higher levels of effectiveness and by the time I’m done meditating, I can engage in my daily yoga practice.
But that day, when the half hour meditation was up, I just felt awful. No improvement — even slightly worse than I usually do right before a regularly scheduled tramadol dose. Almost immediately, my young child awoke crying — unusual for her. I quickly determined that she was running a low fever, and had a few scattered red spots across her arms.
Thinking “chicken pox,” I called in sick to work and took her to the pediatrician. But by the time the doctor came into the room, it was pretty obvious that the sick person in the room wasn’t my daughter — it was me. I hurt all over, as people with fibromyalgia uusally do, but this was as intense as any bad flareup I’ve ever experienced, maybe more so. And I absolutely knew without doubt that I had a pretty high fever.
By the time we were discharged, I was keenly uncomfortable with putting my daughter in the back seat of a car that I was in charge of at that point. I called my husband, who had already left for work — he in turn called my brother who came to pick us up. I went home and crawled into bed as soon as my mother showed up to take care of my daughter.
By that evening, my fever had climbed to 104 degrees Fahrenheit, and I was hallucinating. Alternating doses every two hours of acetaminophen and Motrin were doing little to break that fever, and I was in so much pain and discomfort that sleep was impossible. Instead, I lay in some twilight fugue state between fully conscious and … something else entirely.
In the morning, my mother suggested she take me to the doctor’s office for tamiflu.
That’s when the insanity really started, by the way — quickly:
* my mother passed out in the waiting room due to a undiagnosed cardiac problem;
* since I couldn’t go with her to the emergency room due to my flu, my brother accompanied her;
* while waiting with her in the ER, my brother’s arm began to swell up;
* my husband came home to take care of us and the dog threw up on him.
Funny in retrospect, because we all survived — but at the time … wow. No fun. And my flu symptoms — the worst of them, I mean (the pain and the really high fever) — lasted for five days, despite taking tamiflu religiously.
In short, this was the absolute sickest I’ve ever been. And just how sick I’d been was driven home dramatically and tragically when I returned to work the following week to find out that a colleague’s secretary had died two days before — from the flu.and
As if the pain from fibro and degenerative disk disease weren’t enough!
It’s important for all of us to keep ourselves healthy — the flu is a serious illness. But that’s especially true for those of us who live with chronic pain conditions. And if the yearly flu season weren’t enough, now we have to consider H1N1 as well.
Here are some tips to keep yourself from catching the flu — any variety — this season.
Better Hygiene Practices Can Prevent a Lot of Illnesses
* Wash hands frequently.
* Antibacterial gel.
* Keep cleaning wipes handy for kitchen and bathroom
* Don’t forget to wipe down phones and doorknobs — also computer keyboards, your trackball or mouse, the alarm clock
* Get a separate toothpaste tube for each person in the house.
* Learn to love paper towels.
* Get creative with daily activities. Push elevator buttons with a pen. Turn off the lights with your elbow. Wear gloves when at the ATM or shopping with a credit card or debit card at the grocery store.
Diet Can Improve Your Immune Function
While there’s no magic food that can prevent the common cold or flu, research does tend to indicate that a healthful diet, combined with some specific foods known to have beneficial health effects can help you increase your immune system’s ability to fight off diseases.
* Yogurt: Shift workers who consumed a drink containing Lactobacillus reuteri, a probiotic that appears to stimulate infection-fighting white blood cells, were 33 percent less likely to take sick days than those who took a placebo, according to an 80-day Swedish study published in Environmental Health. But beware, says Elizabeth Somer, RD, author of 10 books on nutrition: “Some companies make up probiotic names to put on their label.” She suggests looking for yogurt that contains Lactobacillus acidophilus as well as Bifidus and L. rhamnosus. “They’re even more effective when combined,” she says.
* Garlic: According to a study published in Advances in Therapy, subjects who swallowed a garlic capsule for 12 winter weeks were two-thirds less likely to catch a cold; those who did suffered for 3 1/2 days less. Garlic contains allicin, a potent bacteria fighter, and other infection-fighting compounds, and Somer believes it’s even more effective in food form. She suggests adding one to three cooked cloves to your food each day.
* Black tea: Drinking 5 cups a day for 2 weeks can turn your immune system’s T cells into “Hulk cells” that produce 10 times more interferon, a protein that battles cold and flu infections, according to a Harvard study. Don’t like black tea? The green variety will also do the trick. If you can’t stomach drinking that much, you can still get added protection with fewer cups.
* Mushrooms: They contain more than 300 compounds that rev up immunity, in part by escalating the production of infection-fighting white blood cells and making them more aggressive. Shiitake, maitake, and reishi varieties contain the most immune-boosting chemicals, but plain old button mushrooms will also do the job.
* Fatty fish: Salmon, mackerel, herring, and other fatty fish contain omega-3 fatty acids, which increase activity of phagocytes — cells that fight flu by eating up bacteria — according to a study by Britain’s Institute of Human Nutrition and School of Medicine. They also contain selenium, which helps white blood cells produce cytokines, proteins that help clear viruses. Other research shows that omega-3s increase airflow and protect lungs from colds and respiratory infections. In fact, says Somer, DHA and EPA (the two main forms of omega-3s) benefit the immune system at the most basic level, enabling cell membranes to efficiently absorb nutrients and remove toxins.
Supplement Your Diet Wisely to Fight Off the Flu
Personally, it’s my belief that some folks put way too much faith in supplements. It’s universally considered more beneficial by researchers to get your vitamins and nutrients from food, instead of pills.
Even with Vitamin D, which isn’t easy to get a full dose of with a normal diet, your body can produce what you need with just a few minutes of sunlight daily (without sunscreen, so exercise caution, and if you have or might be susceptible to skin cancers, take a supplement and skip the sun). Each glass of milk contains about 100 IU of D, and the recommended daily allowance (RDA) in the US is 400 IU. Most reliable experts recommend about 1,000; you can take higher levels, but be warned that toxicity kicks in around the 50,000 IU level.
In addition to Vitamin D, you might want to think about upping your intake of the following nutrients and vitamins:
* Omega-3 fatty acids. Purified fish oil capsules with at least 1 g combined of EPA and DHA are best.
* Cold-fX. Yes, I’m usually skeptical, too, but read on: “Subjects who took two daily capsules of Cold-fX (available online), a supplement containing North American ginseng extract, caught half as many colds as a group taking a placebo, according to a study done by the Center for Immunotherapy of Cancer and Infectious Diseases at the University of Connecticut. When they did get sick, their symptoms lasted less than half as long. This particular ginseng variety contains compounds that increase white blood cells and interleukins, proteins the immune system relies on.” – from
* Zinc, when you have a cold or feel one coming on. Again, from ___: “The research on this mineral has been conflicting. Still, ’30 mg taken at the very start of a cold will shorten it by about half a day,’ says David L. Katz, MD, MPH, director of the Yale University Prevention Research Center. But don’t overdo it. While even a slight deficiency in zinc, which is needed to produce white blood cells, can increase your risk of infection, more than 50 mg daily can suppress your immune system and block absorption of other essential minerals.”
Mom Was Right: Get Your Sleep (and Exercise) to Boost Your Immunity
Nobody’s suggesting you take a daily hour-long aerobics class (though, God, I’d really like to be able to do that). But about half an hour of walking a day can have a therapeutic effect on your body’s ability to fight off and decrease stress, which impairs immune function.
Additionally, according to a study published in Medicine & Science in Sports & Exercise, regular physical activity — as long as it’s not extreme — lowers your overall risk of upper-respiratory infections.
Snooze for at least 7 hours a night. “A single night of sleep deprivation can depress your immune system,” says Katz. After 153 healthy men and women were exposed to a cold virus, those who had slept more than 7 hours each night during the preceding 14 days reduced their risk of contracting the rhinovirus by up to 300 percent, according to a 2009 study published in Archives of Internal Medicine. And get some solid shut-eye the night before your shot. According to research published in the Journal of the American Medical Association, when healthy men were limited to 4 hours of sleep before getting a vaccination, they developed only half the normal number of antibodies.
Try tai chi. When women ages 55 to 65 practiced tai chi for an hour 4 times a week, Shanghai University of Sport researchers saw the women’s levels of two different disease-fighting cells jump by nearly 32 percent over 4 months. Start practicing a week before your flu shot and you can boost its effectiveness by as much as 17 percent, found a University of Illinois study. To get started, try Element Tai Chi for Beginners ($15; collagevideo.com).
Party on — moderately. People who are socially active get fewer colds, even when intentionally exposed to the cold virus. Researchers postulate that frequent socializers tend to be more positive and maintain high-quality emotional ties, both of which strengthen immunity.
1. Cover your mouth and nose with a tissue when you sneeze. Okay. Everyone knows to do this…right? Then why do I still see so many people just letting their sneezes loose? Use a tissue or napkin and throw it away immediately afterwards. If a tissue isn’t available, sneeze into the inside of your elbow—not in your hands.
2. Wash your hands regularly. Another reminder you can never hear too many times. Use soap and water, or an alcohol based hand cleaner. Washing hands is especially important after sneezing or coughing, before handling food, or after spending time in a public place.
3. Don’t touch your face. Keep your hands away from your mouth, nose, and eyes. This is hard to do, but at least try to be aware if you’re doing it often. See above and wash frequently if you can’t keep your hands off yourself.
4. Get some sleep. Having a regular and appropriate sleep schedule is one of the best ways of keeping your immune system strong and staying healthy. The National Sleep Foundation recommends 7-9 hours per night for adults.
5. Be wary of surfaces—clean them regularly. Tables, chairs, countertops, desks, computer keyboards, doorknobs…pretty much everything you touch on a regular basis. Most common household disinfectants should work fine to keep them germ-free.
6. Exercise. A sure way to make sure your body is strong and ready to fight infection is to stay active. Make exercise a part of your daily routine to cleanse toxins from your body and release stress.
7. Eat well. Maintain a diet full of immune boosting foods and high in Antioxidants, such as vegetables, fruits, and whole grains.
8. Drink well. Have plenty of water to flush toxins from your system. Vitamin-C rich fruit juice is a good choice as well. Avoid alcohol—it’s an immune suppressant.
9. Stay away from sick people. A few feet should do it. Just stay far enough away from sick friends to be out of range of saliva, snot, and other potential disease carrying fluids.
10. Get help when you need it. If you start experiencing flu-like symptoms such as fever, coughing, sneezing, chills, body aches, etc., call your doctor. Do your co-workers or classmates, and yourself, a favor by staying home for at least 24 hours—except to see a doctor.
11. Stay calm. There’s likely to be plenty of swine flu coverage in the media over the next few months, but nothing does your body more of a disservice than unnecessary stress and panic. If we’re smart, cautious, and relaxed, we have little reason to fear.

It was the sickest I’ve ever been.

The first Monday in December of 2003 started off fairly ordinary, but quickly devolved into a medical nightmare. I remember getting up at 4:30, as is my custom, and sitting in meditation for half an hour, after my morning dose of tramadol. The theory is that while I meditate, the tramadol and the acetaminophen I take with it begin to reach higher levels of effectiveness and by the time I’m done meditating, I can engage in my daily yoga practice.

But that day, when the half hour meditation was up, I just felt awful. No improvement — even slightly worse than I usually do right before a regularly scheduled tramadol dose. Almost immediately, my young child awoke crying — unusual for her. I quickly determined that she was running a low fever, and had a few scattered red spots across her arms.

Thinking she might have chicken pox, I called in sick to work and took her to the pediatrician. But by the time the doctor came into the room, it was pretty obvious that the sick person in the room wasn’t my daughter — it was me. I hurt all over, as people with fibromyalgia uusally do, but this was as intense as any bad flareup I’ve ever experienced, maybe more so. And I absolutely knew without doubt that I had a pretty high fever.

By the time we were discharged (without the chicken pox, thank goodness), I was keenly uncomfortable with putting my daughter in the back seat of a car that I was in charge of at that point. I called my husband, who had already left for work — he in turn called my brother who came to pick us up. I went home and crawled into bed as soon as my mother showed up to take care of my daughter.

By that evening, my fever had climbed to 104 degrees Fahrenheit, and I was hallucinating. Alternating doses every two hours of acetaminophen and Motrin were doing little to break that fever, and I was in so much pain and discomfort that sleep was impossible. Instead, I lay in some twilight fugue state between fully conscious and … something else entirely.

In the morning, my mother suggested she take me to the doctor’s office for tamiflu. That’s when the insanity really started, by the way — quickly:

  • my mother passed out in the waiting room due to a undiagnosed cardiac problem;
  • since I couldn’t go with her to the emergency room due to my flu, my brother accompanied her;
  • while waiting with her in the ER, my brother’s arm began to swell up;
  • my husband came home to take care of us and the dog threw up on him.

Funny in retrospect, because we all survived — but at the time … wow. No fun. And my flu symptoms — the worst of them, I mean (the pain and the really high fever) — lasted for five days, despite taking tamiflu religiously.

In short, this was the absolute sickest I’ve ever been. And just how sick I’d been was driven home dramatically and tragically when I returned to work the following week to find out that a colleague’s secretary had died two days before — from the flu.

As if the pain from fibro and degenerative disk disease weren’t enough!

It’s important for all of us to keep ourselves healthy — the flu is a serious illness. But that’s especially true for those of us who live with chronic pain conditions. And if the yearly flu season weren’t enough, now we have to consider H1N1 as well.

Here are some tips to keep yourself from catching the flu — any variety — this season.

Better Hygiene Practices Can Prevent a Lot of Illnesses

  • Wash hands frequently and thoroughly.
  • Antibacterial gel — keep it handy at all times.
  • Keep cleaning wipes handy for kitchen and bathroom. Wipe down all surfaces you regularly touch.
  • Don’t forget to wipe down phones and doorknobs — also computer keyboards, your trackball or mouse, the alarm clock — anything you or your family touch frequently.
  • Get a separate toothpaste tube for each person in the house to cut down on germs transferred by touching toothbrush to the tip of the tube.
  • Learn to love paper towels. Use them instead of washable towels and sponges.
  • Get creative with daily activities. Push elevator buttons with a pen. Turn off the lights with your elbow. Wear gloves when at the ATM or shopping with a credit card or debit card at the grocery store.
  • Keep your hands away from your face.

Diet Can Improve Your Immune Function

While there’s no magic food that can prevent the common cold or flu, research does tend to indicate that a healthful diet, combined with some specific foods known to have beneficial health effects can help you increase your immune system’s ability to fight off diseases.

  • Yogurt: A recent Swedish study published in Environmental Health showed that probiotic-drink-swilling workers took a third fewer sick days than their colleagues who downed a placebo version. Look for labels that specify Lactobacillus acidophilus, Bifidus and L. rhamnosus.
  • Garlic: A key ingredient in garlic — allicin — is a strong antibacterial. Aim for a few cloves added to your food daily.
  • Black tea and green tea: If you can handle it, imbibe up to 5 cups each day instead of coffee. A Harvard study showed that doing so increases interferon levels up to 10 times the normal level. Interferon, of course, is a protein that helps protect your body against certain infections, including colds and the flu.
  • Mushrooms: These little suckers are powerhouses of immunity-increasing action. Some resources suggest that the shiitake, maitake, and reishi varieties do the most good. The regular white capped button variety will work, too.
  • Salmon, mackerel, and other fatty fish contain omega-3 fatty acids, which can help increase your body’s ability to fight off bacteria and protect against respiratory infections.

Supplement Your Diet Wisely to Fight Off the Flu

Personally, it’s my belief that some folks put way too much faith in supplements. It’s universally considered more beneficial by researchers to get your vitamins and nutrients from food, instead of pills.

Even with Vitamin D, which isn’t easy to get a full dose of with a normal diet, your body can produce what you need with just a few minutes of sunlight daily (without sunscreen, so exercise caution, and if you have or might be susceptible to skin cancers, take a supplement and skip the sun). Each glass of milk contains about 100 IU of D, and the recommended daily allowance (RDA) in the US is 400 IU. Most reliable experts recommend about 1,000; you can take higher levels, but be warned that toxicity kicks in around the 50,000 IU level.

In addition to Vitamin D, you might want to think about upping your intake of the following nutrients and vitamins:

  • Omega-3 fatty acids . Purified fish oil capsules with at least 1 g combined of EPA and DHA are best. If you just can’t stand those fatty fish, look for these.
  • Cold-fX . Yes, I’m usually skeptical, too, but this one apparently works.
  • Zinc , when you have a cold or feel one coming on. Also has some skepticism and mixed results behind it, but worth a try.

Mom Was Right: Get Your Sleep (and Exercise) to Boost Your Immunity

Nobody’s suggesting you take a daily hour-long aerobics class (though, God, I’d really like to be able to do that). But about half an hour of walking a day can have a therapeutic effect on your body’s ability to fight off and decrease stress, which impairs immune function.

Additionally, according to a study published in Medicine & Science in Sports & Exercise, getting moderate, daily exercise can reduce your chances of developing upper-respiratory infections. Just don’t overdo it; extreme exercise apparently weakens your immune response.

Along with that, you might want to consider trying tai chi. According to researchers at Shanghai University of Sport, women between 55 and 65 who engaged in an hour-long tai chi practice session four times a week, their levels of illness-destroying cells increased over 30 percent over a four-month period. Those results were supported by another study at the University of Illinois, which found that people who took up tai chi a week before getting a flu vaccination improved the shot’s efficacy by over 15 percent.

Whatever amount of sleep is right for you (and it varies for all of us), get it every night. Be hard-headed and insist on it. Take this seriously, because healthy, deep, sufficient sleep is critical for chronic pain patients in any event. It will also improve your immune system’s efficacy. A 2009 study published in Archives of Internal Medicine showed up to 300% reduction in risk of contracting rhinovirus for those who slept more than 7 hours regularly.

If You Do Get Sick, Here’s What to Do

If you do get sick, follow Mom’s orders: stay home. Call your doctor, but do not go to work or school. This is how disease spreads! Do your coworkers and yourself a favor — stay home and rest. Drink liquids — water, Gatorade, juices as able (cut them with water if you have a hard time swallowing the full-strength stuff when you’re sick).

And despite the “swine flu” hysteria in the press, don’t freak out. Staying calm can help your body regulate its normal stress levels and improve your ability to stay well over the flu season months. Don’t buy into the hype. Just be smart, and arm yourself with knowledge from trustworthy sources. (Anyone who starts a post or tweet or comment with “my aunt says” or “according to experts” but won’t name those experts? Proceed with caution, people!)

Stay well, and remember to thrive — not just survive!

Milking It: Is Vitamin D the Answer to Fibro Fog?

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A recent study suggests that Vitamin D consumption during physical development has an effect on brain power as one ages, leading to speculation that appropriate supplementation in later years can help us retain or even improve mental acuity.

Fibro fog, anyone?

According to several studies (see References section, below, for cites), Vitamin D may, in addition to fighting cancer and keeping our skeletons strong, help improve cognitive abilities. That’s an intriguing finding for those of us fighting fibro fog, the occasional decline in aspects of cognition that can accompany fibromyalgia.

Is it possible to alleviate the memory lapses, the word-searching, and the sudden inability to do simple math with just a daily pill? Well — probably not. But even so, Vitamin D is a necessary substance for good health. It’s unique among vitamins in that our own bodies can manufacture it out of sunlight. Fifteen minutes of sun exposure without sunscreen three times a week — most experts seem to agree that this is sufficient to allow our bodies to do their thing.

However, our ability to make this vitamin decreases as we age, so it’s also important to make sure we eat foods rich in vitamin D. Some good suggestions, in addition to the usual milk and milk products, include salmon, cod, and shrimp. Eggs are also a good choice.

A good multivitamin with vitamin D isn’t a bad idea, but if you want to supplement with 1,000 I.U. or more vitamin D pill, check with your physician first; vitamin D can be toxic in large amounts. 1,000 IU should not produce toxicity by itself, but all sources should be considered.

References

  • “Effects of vitamin D supplementation on symptoms of depression in overweight and obese subjects: randomized double blind trial”; Journal of Internal Medicine; R. Jorde, M. Sneve, Y. Figenschau, J. Svartberg J. and K. Waterloo; December 2008 and “Vitamin D deficiency is associated with low mood and worse cognitive performance in older adults”; American Journal of Geriatric Psychiatry; C. H. Wilkins, Y. I. Sheline, C. M. Roe, S. J. Birge and J. C. Morris; December 2006, both quoted in “Mental Health Benefits of Vitamin D” — Michele Turcotte: LiveStrong.com (accessed Nov. 7, 2009)
  • “Vitamin D: Vitamin Dependency, Deficiency and Toxicity” – Merck.com (accessed Nov. 7, 2009)

How to Combat Fibro Fog and Get Your Brain Back in Gear — Phase Three: Coping Mechanisms For Brain Fatigue

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NB: This is the last post in a four-post series about how to combat “fibro fog” and improve cognitive function. Post #1 examines fibro fog in its various manifestations and examines some possible causes. It also provides an overview of a three-phased approach to combating fibro fog that the remaining posts in the series examine in more detail. Post #2 looks at improving sleep; post #3 outlines strategies to keep your brain challenged and healthy; and this post examines various coping mechanisms to deal with the fibro-fog effects that can’t be eliminated by the first two phases.

If you diligently work the first two phases — sleep improvement and brain exercise through chess, music, or number puzzles (or better, all three) — you should see a noticeable improvement in your fibro fog symptoms. However, you may not eliminate all of those symptoms, and so phase three is all about learning tricks and tips to cope with the occasional brain misfires.

Declutter Everything

Clutter around the house equals clutter in the mind. Some may resist this notion, but I’ve found it to be unassailably true in my own life. When my house is a wreck, my confusion increases. When things get relatively straight, my memory improves.

Give it a try and see if it helps you. Don’t attempt to declutter all at once, though. For most of us, this is a long project, that requires planning and the dedication of at least a few weekends.

One method that seems to work well for me, without triggering post-exertional flareups, is to dedicate no more than 20 minutes each day to decluttering, and spending that time on one small area of the house at a time. If the timer goes off before I’m done, I quit anyway, and pick up where I left off the next day. Also, delegate some of the work to other household members! Even small children can help by going through old clothes or sorting things into piles for giveaway, or putting “throw-away” items into a large garbage bag.

Take Note(s)

Notetaking is probably the single most important coping mechanism I’ve found in battling the effects of fibro fog. I always have a notepad with me. I prefer these reporter-style Moleskines (NB: affiliate link) which you can get at Amazon or most bookstores, but simple and cheap versions are available at almost any drugstore or big box retailer like Walmart. Wherever I go, I have one with me, and I keep one in my purse and another in the car at all times, along with pens.

Learn to Love the Sound of Your Voice

Another helpful coping mechanism is to invest in a small digital recorder. Most models are tiny enough to fit into a woman’s purse. Keep yours loaded with a fresh tape. Whenever something hits you that you want to recall later, simply make note of it on the recorder along with the date and time of day. Then, make a habit of reviewing the tapes nightly before bed, jotting down any notes you want to keep track of (perhaps in your reporter notebook, as mentioned above).

Get Things Done

If you haven’t heard of David Allen’s aggressive and highly effective time and task management system outline in his bestselling Getting Things Done book, you might want to check it out. This system won’t be everyone’s cup of tea. Some find it intimidating in its insistence on organized, updated lists and structure. But there are several aspects of the system that are particularly useful for fibro fog sufferers:

  • Create agendas for individuals and businesses. Keep a list of items to discuss with particular people. Sort the list by name, if you like, or just keep one master list and jot down each person’s name before the item to be discussed. Then, the next time you see that person, you can simply pull out the list and check off what you discussed, along with any notes that you might need to remember.
  • Strive for an empty “inbox” — whether that’s email or a virtual “tasks” inbox. Aim to sort everything that comes across your desk or your consciousness just once.
  • Learn to love the “two minute” rule. If it takes less than two minutes to do whatever needs doing with any incoming item, then go ahead and do it. Otherwise, put it in an appropriate file or folder, whether that’s a physical file on your desk or a folder on your computer. Organize your folders into large groupings such as “Deferred Items,” “To Delegate,” “Need More Information,” or “To Be Filed/Reference.”
  • Cultivate the helpful habit of a weekly review. Each week, on a particular day (some suggest Fridays or Sundays as particularly good days for this), set aside half an hour or so to go over your notes and files from the prior week. If some appointment or task is suggested by this review, go ahead and schedule it for a specific time and date. If you can file it, do so. If it needs to be researched, then make plans to get the information you need. The idea is to start and end each week with an overview of what’s gone before, and what’s coming up, and hopefully an empty “inbox”!
  • Keep your calendar scrupulously updated . I suggest using two calendars — a physical one and a computer-based one. Whichever is your primary calendar, use that one to update the other. It’s most helpful to use a small pocket-sized or “junior” sized physical calendar, one that can be schlepped around in a purse or briefcase. Then you can add items to your calendar throughout your day, no matter where you are. When you return to the computer, you can update the computer calendar with more information as needed.
  • Investigate a few of the many computer “capture” tools . I particularly like Evernote, as it’s free to use for most of us, and has a handy web clipper button that inserts itself into your browser window, so you can capture notes from web pages, along with the URL of the site. Then you can add tags to your notes, slip them into the appropriate files or folders, and be done with it. Highly efficient!

Diet, Supplements, and Aromatherapy

Even if you’re skeptical of all that “New Age” stuff, you might want to give these options a try. Studies support the use of each to aid memory and brain function:

  • Vitamins . Make sure you take at a minimum a daily multivitamin. You can add extra D and B complex to aid in memory and cognitive function.
  • Gingko biloba and Omega 3 . Each of these is thought to assist in brain function as well.
  • Rosemary — scent . Use either natural rosemary oils in a diffuser or burn a “rosemary stick” if you can find one locally. (These are simply bound-up bundles of dried rosemary that smolder when lit. Be careful to have a large bowl of sand available to extinguish the embers when you’re done, though!)
  • Rosemary — cooking . Add rosemary to dishes to protect your body’s natural supply of acetylcholine, which attacks free radicals in the body that can diminish cognitive functions.
  • Shellfish . Be mindful of the potential for mercury intake, but if you have a safe source, shellfish are thought to boost brain function.
  • Good nutrition overall. Failure to eat sufficient nutrients for basic life functions can have a devastating impact on our overall health, including brain function. Make sure you’re taking in enough calories overall for your size and body weight, and that those calories are provided by natural, whole foods, not highly processed snacks and derivatives.
  • Water. It’s easier than you might think to get dehydrated. Make sure you’re drinking sufficient water to keep yourself hydrated. There’s absolutely no scientific evidence for the old saw about “eight glasses a day”, by the way — four to six is probably sufficient, and don’t forget all water counts, even the water found naturally in food and other drinks.

Meditate, Every Day

Not only useful for stress reduction, which is itself helpful for improving your brain function, meditation also teaches us over time to remain equanimous in the face of anxiety triggers. It also teaches us to be “in the moment”, which helps tremendously to create a state of what’s called “flow” — that easy, natural sensation you sometimes experience when you’re fully engaged in an activity, and things just easily “flow” from one stage to the next.

You need no special equipment or training to meditate. Simply set aside fifteen to thirty minutes every day where you won’t be disturbed. Wear comfortable clothing, and find a seated position that allows you to keep your spine straight. (Beginners should avoid lying down as it’s all too easy to simply all asleep while meditating; while rest is also good, meditation requires a deeply relaxed yet still conscious state of mind.) Then close your eyes and … you have a choice:

  • Bring to mind a mantra or phrase that has meaning for you. “I am well” — “om” — “peace surrounds me” — “God is with me” — all of these will work just fine.
  • Count your breaths. Simply observing and counting your breaths will keep the rest of your mind from interrupting with daily trivia and is a powerful meditation technique.
  • Consider intruding thoughts like butterflies or falling leaves: simply observe them and then make them “fly away” or fall to the ground, giving them no import or emotional significance. Then return your mind to a peaceful, blank-slate state.

There are many methods of meditating. Explore them all until you find one that feels good to you. Don’t beat yourself up if you can’t seem to manage more than a few minutes at a time. Every little bit helps, and it takes practice to develop the skill of holding that empty-mind state for a length of time. Whatever you do, don’t use meditation as one more thing to beat yourself up over!

Nootics: The Wave of the Future?

The efficacy of nootics — substances such as nutritional supplements, foods, drugs, and the like that are believed to enhance memory or cognitive skills — have yet to be proven conclusively. However, some fibromites (and others) claim they’ve experienced benefits from their use.

Wikipedia (although not universally helpful) does have some good information on nootics, if you’d like to consider their use. You may also want to review Nootropics.com, although it has a clear agenda. For a scholarly approach, try this abstract of “Memory enhancing drugs and Alzheimer’s Disease: Enhancing the self or preventing the loss of it?”

As with any new treatment, please consult your doctor before adding nootropics to your regimen, to ensure against contraindicated measures.

Bottom Line: Stay Positive and Stay Involved

That’s the end of our three-step “How to Combat Fibro Fog” series! I hope you enjoyed it, and got something out of it that you can try. Did I miss a particularly helpful strategy you’ve tried? Share it in the comment

How to Combat Fibro Fog and Get Your Brain Back in Gear: Keeping Your Brain Engaged

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NB: This is the third in a four-post series about how to combat “fibro fog” and improve cognitive function. Post #1 examines fibro fog in its various manifestations and examines some possible causes. It also provides an overview of a three-phased approach to combating fibro fog that the remaining posts in the series will examine in more detail. Post #2 looks at improving sleep; this post outlines strategies to keep your brain challenged and healthy; and post #4 will examine various coping mechanisms to deal with the fibro-fog effects that can’t be eliminated by the first two phases.

Phase Two: Keep Your Brain Sharp

Making time to engage in activities that keep your brain’s neurons firing in diverse ways is crucial to combating the effects of fibro-fog and to improving your brain health overall, which is important as we age.
The following activities are especially recommended as they call on different areas of intelligence and provide a comprehensive “brain fitness” program which can help beat back fibro fog and general brain dysfunction caused by aging as well.

Chess, Anyone?

I’m personally very excited about this discovery: chess is an amazing all-around brain booster when it comes to fighting fibro-fog! It may seem daunting if you’ve never played before, but my experience might be encouraging to you.

First, a bit of background about my own fibromyalgia history: I was diagnosed in early 2000. Thanks to a supportive doctor and my own willingness to take a fairly scientific yet assertive approach to management, was able to enjoy a fairly high quality of life for several years.

This was due to a complex, comprehensive treatment program I developed over the years that included restorative yoga, a diet rich in lean proteins and complex carbohydrates, several conservative “feel good” measures, and regular, but carefully monitored, doses of tramadol with acetaminophen.

Unfortunately, due to various severe stressors I experienced from 2007 on, my fibro got significantly worse, culminating in the horrifying discovery earlier this year (2009) that I was no longer able to practice my profession (law), primarily because of cognitive problems. That’s a scary feeling for anyone, and I admit I panicked at first.

I wish I could say I’m all better now, but I’m not. However, I have improved my brain function to a noticeable degree and one of the keys to this improvement, I’m convinced, is that I started learning to play chess.

Chess is a complex game of strategy, requiring players to think several moves ahead, and consider various game permutations in order to make the best tactical moves. The rules of chess are fairly simple but the way those rules play out in a real game can be mind-boggling! My theory is that this complex reasoning can be developed as one learns the game, and that this process must somehow “ignite” the faulty neurons that misfire in fibro fog.

I started with a program that came pre-loaded on my latest computer purchase, a Gateway laptop: Chess Titans. By setting the level to “1” (rank beginner), and refreshing my memory about the various rules of piece movement, I was able to engage in a few games and even managed to eke out a few “draws” (but no “wins”!) against the computer, which also played at a beginner level.

I did some research online at free websites (some of these are outlined in the resource list below), and educated myself on various maneuvers and openings. Then I made a cool accidental discovery: by setting Chess Titans to “new game against human being” I could take historic games, such as Game Thirteen of the 1972 Fischer-Spassky World Championship match, and play it out on the virtual board before me. By following the action along with written commentary about the moves — why this move was bold but that one was a blunder — I was able to improve my understanding about the game dramatically.

I’m still a rank beginner — after all, I’ve only been playing a few weeks — but I have noticed significant improvement in my mental capacity, especially in the area of deductive reasoning and, oddly, memory and retention. I play daily now, for a half hour or so. If that’s the price for better control over fibro-fog, it’s one I’m happy to pay — it requires little time, and it’s fun, to boot — especially now that I’m starting to win a few games!

Sudoku: The Numbers Game

Sudoku became something of a craze awhile back, and it’s been highly recommended by neurologists and researchers as an excellent way to maintain brain fitness against the natural decline of the aging process. It’s also a great way to exercise a different area of the brain in the fight against fibro fog.

Playing number games like Sudoku doesn’t just improve your math skills. Interestingly, perhaps because it requires you to reason out ahead of time, much like chess, it can also improve overall cognition, in my experience.

You can find cheap Sudoku puzzle books in any drugstore or big box superstore, such as Walmart. You can also find online puzzle sites that offer free games, either for print or for playing online.

Play That Funky Music

I’m not just suggesting you put on your favorite CD or load up your iPod. I’m saying “play an instrument” — and learn one, if you don’t currently know how to play.

There’s a huge resistance among many of a “certain age” against picking up a new instrument later in life. I understand the anxiety, believe me. When I finally satisfied a life-long itch to learn the violin two years ago, I was surprised by the fact that there weren’t many resources out there for adults learning to play. I ended up with the “baby” Suzuki method books, which worked just fine but it would have been nice to have some more “grown-up” references available!

Anyone can learn to play an instrument with time and practice. Playing music is actually doubly beneficial. The music itself — the process of learning a piece and perfecting it — acts like aerobic exercise for cognition, but also the process of learning the instrument itself is powerfully helpful against fibro fog and general cognition decline.

So, even if it’s been awhile — or if you’ve never picked up a musical instrument in your life — give this some thought. Cheap student violins can be purchased online for as little as $50; you may be able to borrow your church’s piano for practice during times when no one’s using the sanctuary; you can even rent instruments from many music shops, if you want to give it a try but aren’t too sure about making an initial investment.

One thing I recommend from personal experience — i.e., my own mistakes: if you’re going to go to the trouble of learning a new instrument, invest in a few lessons from a qualified teacher who is supportive of older learners. Not every teacher is, so question them on that latter point! I dove into the violin without the aid of one-on-one lessons, using DVDs and online videos, and that was OK, but I think I could have gone much farther more quickly with the aid of a live instructor who could correct my form directly.

If you already know how to play, then purchase some music that’s a little more difficult than your current level of proficiency, and set aside time regularly to work on the piece.

Whichever you are — a total beginner, a returning student, or a lifelong musician — conquering an instrument and playing something you weren’t able to play before not only improves your brain fitness but it’s also a huge boost to your self-confidence!

In the next post, we’ll examine ways to cope with fibro fog’s cognitive malfunctions.

How to Combat Fibro Fog and Get Your Brain Back in Gear: Better Sleep = Functional Brains

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NB: This is the second in a four-post series about how to combat “fibro fog” and improve cognitive function. Post #1 examines fibro fog in its various manifestations and examines some possible causes. It also provides an overview of a three-phased approach to combating fibro fog that the remaining posts in the series will examine in more detail. This post looks at improving sleep; post #3 outlines strategies to keep your brain challenged and healthy; and post #4 examines various coping mechanisms to deal with the fibro-fog effects that can’t be eliminated by the first two phases.

Why We Start With Sleep Problems When We’re Combating Fibro Fog

Most experts agree that sleep is, if not the single cause of fibro fog, one of the largest contributing factors. Although fibromites can have wildly divergent experiences with this condition, one thing that almost all of us share in common is poor sleep and not enough of it.

As most of us who are parents learn when our children are infants, there’s a very good reason that sleep deprivation is used as a torture technique: it works! Inadequate rest can quite literally shut your brain down, increase confusion, deaden your reflexes, and create massive gaps in your memory and recall ability.

So, we start with improving our sleep in Phase One of this three-phrase approach.

Phase One: Address Your Sleep Issues First

Start by attacking the generally-agreed-upon root cause of fibro fog first: poor sleep. Begin by taking a week-long “read” of your current sleep patterns. Ask yourself the following questions:

  1. How long do you sleep at a time?
  2. How often do you reach waking consciousness during the night?
  3. How many times are you aware of moving in bed because of pain?
  4. What is your pain level when you go to bed compared to when you get up in the morning?
  5. What is your current nighttime pre-bed ritual?
  6. What did you have to eat and drink before bed, and how close to bedtime were these taken?

If you can arrange to perform this initial survey during a week when you don’t have to set the alarm to wake up, you’ll get more reliable results. But start with wherever you are and do the best you can.

Analyze Your Results

From your informal survey of your past week’s sleep patterns, you should now have a clearer idea of what your specific sleep issues are, whether that’s waking up too many times during the night, falling to sleep in the beginning, or sleeping long enough overall.

Now you can begin to adjust your sleep-related habits more effectively. I suggest trying each major adjustment one at a time for a week or so, before adding or trying another. This gives your body time to adjust to the new routine but also allows you to see which adjustment “did the trick” if you begin experiencing improved sleep.

Basic Sleep Hygiene

Begin by improving on some general “hygiene” habits that have been shown to improve sleep in terms of both quality and quantity. These suggestions include:

  • Lower the temperature in the room. Studies show we sleep best in cooler temperatures.

  • Experiment with pillows to provide support beneath and between knees, depending on your preferred sleep position, to ease pressure on the back.

  • Move all electronics out of the bedroom, save for an alarm clock if necessary. But turn the alarm clock away from the bed, to remove the temptation of looking at it when you have trouble falling asleep; this will only increase anxiety.

  • Leave at least three hours between your last meal or drink before bedtime. This can reduce the urge to urinate in the middle of the night, which might help your body stay in the sleep pattern, instead of waking to go to the bathroom.

  • Experiment with white noise or nature sounds to prevent waking due to household noises.

  • If you like to read before bed, watch what you read: eschew thrillers and tightly-plotted suspense novels for more literary or spiritually-themed books that you’ll be able to put down more easily. (I can personally recommend Marcel Proust’s In Search of Lost Time!)

  • Try installing a home fragrance diffuser or air freshener with a lavender scent. Better yet, use lavender water to freshen your bed linens. Lavender has been shown in several studies to produce a relaxing, calming atmosphere.

  • Put up blackout curtains underneath your normal bedroom window coverings to block out all ambient outside light from streetlamps, full moons, and the sun in the morning.

  • Eliminate caffeine from your diet after 4 PM, or better yet, eliminate it altogether. Some people appear to be more sensitive to this drug than other people are, and by eliminating it completely, you can tell whether you’re one of those people. If your energy picks up dramatically during the day (an odd but not uncommon side effect for caffeine sensitives) and you fall asleep more easily at night, you’ll know to avoid caffeine in the future.

  • If you like to take a bath before bed, make certain the water is not too hot. Increases in body temperature can make falling asleep more difficult.

Should You Try Medication?

If all else fails, consider speaking to your doctor about medication to help you sleep. For fibromyalgia patients, these drugs can either be pain-relievers (if it’s the pain keeping you from attaining good rest) or sleep aids such as Lunesta and Ambien. Talk to your physician to determine whether one or both of these might be a useful addition to your treatment program.

While some are resistant to prescription drugs for fear of becoming addicted, the truth is that the real rate of addiction in chronic pain patients is pretty low.

The media doesn’t do much to assuage these baseless fears and in fact aids in the perpetuation of the chronic-pain-addict myth by confusing two very different concepts: addiction and dependence. Addiction is a psychological malady that is an unfortunate side effect of using pain medication for the wrong reasons; dependence is a perfectly normal and expected physical state that results from the proper use of such medications.

If you’re concerned about dependence, as opposed to addiction, your doctor should be able to reassure you and give you ways to keep your body from becoming dependent, if you’re steadfast about that. If you have reason to be concerned about addiction, then you should still talk to your physician because there may be non-habit forming alternatives you can try.

The bottom line is that sleep isn’t just a good idea or something you’d like to have more of: it’s absolutely crucial for everyone, but especially so for chronic pain patients, and maybe even more so for fibromyalgia patients. Why? It’s only during restful, deep sleep that our muscles can heal.

So, whether you decide to try medication, or decide against it, that’s an extremely personal choice. But whatever you do, don’t give up on the quest for a good night’s sleep. It’s that important.

In the next post in this series, we’ll examine strategies to keep your brain challenged and healthy.

How To Beat Fibro-Fog and Get Your Brain Back in Gear (Part 1 of 4)

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NB: This is the first in a four-post series about how to combat “fibro fog” and improve cognitive function. This post examines fibro fog in its various manifestations and examines some possible causes. It also provides an overview of a three-phased approach to combating fibro fog that the remaining posts in the series will examine in more detail. Post #2 will look at improving sleep; post #3 outlines strategies to keep your brain challenged and healthy; and post #4 examines various coping mechanisms to deal with the fibro-fog effects that can’t be eliminated by the first two phases.

Fibromyalgia sufferers know all too well the agony the condition can cause — debilitating pain, sleepless nights, irritable bowel syndrome, and more. But of all the myriad, complex symptoms of fibromyalgia, probably the most frightening to many of us is the amusingly-named, but not so funny, “fibro fog.” Fortunately, there are many things we can do to combat fibro fog, if not outright eliminate it from our lives altogether.

What Is Fibro Fog, and What Causes It?

Before we examine the strategies to combat fibro fog, however, let’s take a short look at what it is and what may cause it.

Briefly, fibro fog can be used to describe just about any cognitive impairment that we might experience with fibromyalgia. Some common manifestations of this experience are:

  • Forgetting the right “word”
  • Misnaming common objects
  • Losing track of our thoughts as we’re speaking
  • Forgetting where commonly used items are
  • Struggling with new information
  • Difficulty retaining learned information

There are many variations on fibro fog, of course, because we all experience it in slightly different ways. However, despite the funny name, it’s not at all funny to suddenly forget a child’s name, or struggle with the appropriate word to describe an object we use every day. It’s downright frightening!

Fortunately, we know that this is not a psychological problem, nor is it a symptom (necessarily) of Alzheimers. (However, if you have reason to suspect it may be Alzheimers, it would be worthwhile to see a doctor about diagnostic tests to rule out this more serious condition.)

Most researchers attribute fibro fog to another of the most common fibro symptoms: sleep disturbance. In short, many believer that it’s our lack of high-quality, consistent sleep that leads us to become perpetually sleep—deprived, and it’s that sleep-deprivation in turn that causes the cognitive problems.

An Overview of the Three-Phase Approach to Combating Fibro Fog

Whether it’s lack of sleep alone or in combination with other factors operating in the fibromyalgia patient, there are specific strategies you can undertake today to combat fibro fog and get your brain back in working order. I recommend the following three-phased approach that focuses first on your sleep issues, and then on keeping the brain active and engaged.

In Phase One, we’ll look at what many believe to be the root cause of fibro fog: poor quality of sleep. I’ll suggest some strategies to improve both the quality and length of your nightly rest and suggest other resources you can explore for further assistance.

In Phase Two, I’ll outline several strategies you can adopt to keep your brain challenged and healthy. Exercising the “mental muscle” is crucial to keeping those brain neurons firing on “all four cylinders” so to speak; engaging in challenging mental activities can boost your cognitive function in significant and noticeable ways.

Finally, Phase Three consists of several tricks, tips, and mechanisms that help fibromyalgia patients cope with the effects of fibro fog that can’t be eliminated using the activities in the first two phases.

Exercise and Fibromyalgia: A Love/Hate Affair

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I Wish I Could Move Like That …

My reaction to reading Sirena Dufault’s story about hiking the Arizona Trail was, I suspect, like many fibro-folks out there, one of pure, unadulterated envy.

As I read on, though, I began to wonder: was her story really so different from mine? Or anyone else’s? Was her pain any different? Any less severe?

I was forced to conclude “probably not.” Which only makes me crazier, frankly. If she can do it, why not me?

Fibromyalgia and Exercise: Why I Resist What Could Make Me Better

I had this dream of hiking up Mount Kilimanjaro once. I gave it up when fibro hit. How do I reconcile that fact — that I had this dream, this cherished goal, but gave it up in the face of fibro — with my reluctance not to accept my limits? Either it wasn’t that cherished, this dream of mountain climbing. Or, I’m only insistent on refusing to accept some limits, but not all.

As I sit here today, on a hot Friday afternoon in coastal South Carolina, suffering from a flareup of both the fibro and sciatica from my degnerating disks’ impingement on the sciatic nerve, I know that I have to move my body. I know that if I do move my body — gently, to be sure, and in very controlled ways — that both of these flareups will ease somewhat.

Yet, here I sit, watching a movie on Showtime, typing up this post.

Why is it so hard to get moving? Because we don’t want to hurt more. Because we’re more comfortable wih the pain we know than the pain we don’t know — the pain we have, over the pain we haven’t yet acquired. Because it’s easier to be still than to move.

But it’s been pretty well established that a carefully designed and monitored (not to mention “slowly implemented”!) exercise program can be very effective in reducing chronic pain — including the pain of fibromyalgia.

So why are so many of us still sitting on the couch, afraid to move? We know if we go too far, too fast, that we’ll end up in a flare. This is also a fairly well-established fact. This is a tightrope we have to walk, make no mistake — it’s high, and it’s really skinny. One misstep — one quarter-inch left or right — and we fall into much worse pain.

Nevertheless, we must walk it. So, how do we start to wrap our minds around this process, and begin to embrace exercise, instead of fear it?

First Things First: See Your Doctor

Make an appointment with your doctor right off the bat, before you begin any new exercise program.

Talk to her about what you want to do, and discuss with her what sorts of activities you can safely engage in. Find out what she recommends — what’s worked for her other patients with your condition — what you should stay away from for now.

Also, make certain that your blood pressure and current weight will support exercise. Get very clear with your physician on any special safeguards you should take.

Know Why You Haven’t Exercised Yet

First, get clear on why you haven’t exercised yet. Acknowledge every single fear, every single belief — and I daresay it’s not just the fibro that’s been keeping you on the sidelines.

It’s probably also the fear of being seen as ridiculous, or feeling ridiculous, or getting uncomfortably hot or sweaty, or feeling worse about ourselves and our bodies than we already do. Write them all down and own them, each and every single fear, thought, or belief.

Acknowledging our beliefs is the first step to changing them.

Define Your Vision

Next, think about your ideal — your vision of yourself in movement. Do you dream of hiking up a mountain? Walking the length of an 800-mile trail? Running a marathon? Swimming daily? Finishing a yoga class?

Whatever your vision of yourself-in-movement is, write down a description of that vision as if it were already true. A few cautionary guidelines:

  • Be realistic. You’re not going to be prima ballerina of the New York City Ballet, I’m afraid.
  • But make it exciting. Too small a goal won’t energize you and get you motivated.
  • Pick what truly lights your fire. If it doesn’t ignite your passion now, you’ll have a much harder time of it when things get tough — and they will.

Write down your vision as if it’s already your reality, in the present tense with as many sensory details as possible — what does it feel like, doing whatever movement you’ve chosen? Are you racing on a horse’s back with the wind whipping your hair? Are you slicing easily through the pool’s water like a mermaid?

The goal here is to conjure up as vivid a picture of you in action as you possibly can, so that your body actually gets tricked a little into thinking it’s already real. Your body and mind doesn’t know any better, you know. Convince them it’s real, and you’re well on your way.

Determine Your New Beliefs

Think of the person — you — with fibro (or whatever your chronic pain condition might be) — moving, with that vision in mind. What does that person have to believe, in order to do what she does?

Using your list of fears and current beliefs as a template or guide, begin listing out the beliefs that enable that vision to become reality.

If you believe now that it’s not worth it to risk a new flareup, then how about believing “careful exercise makes me feel better and nothing is more important than feeling better”?

If you believe “It’ll make me feel like a failure” then how about “Exercising and taking care of myself makes me feel wonderful, like a goddess”?

Just write them down for now. Don’t worry about whether you can adopt those beliefs, how “wrong” they feel to you as you write them down, or whether they’re “accurate” — just list them down. Create the full picture of how it all looks on paper, in black and white, to be this person who moves the way you want to.

Open Your Heart and Mind to Your Vision

This is probably the hardest part of this process: contemplating the possibility of letting go your current beliefs in favor of the new ones.

For some, this might smack of “it’s all in your head.” Please understand: that’s not what I’m saying. At all. (Hopefully, y’all know that about me by now!)

Rather, it’s about changing the beliefs that are holding you back from doing something that’s scary and risky, but very effective at relieving your pain. It’s about your motivation to engage in this particular kind of treatment, not the pain itself.

But to get there, you first have to be able to envision letting those old beliefs go completely. And for many of us, that’s a scary proposition in itself. If you’re having difficulty with that concept, then try telling yourself this: “I can always pick up my old beliefs if the new ones don’t work.”

However, if you want to see a different result, you’re going to have to do things differently. If you’re going to do things differently, you’re going to have to believe different things. And to do that, you first need to open up to the possibility itself.

Changing Your Beliefs

It sounds strange, perhaps, at first. But it can be done. We change our thoughts all the time, and beliefs are nothing more than entrenched thoughts.

This is not to say that the process of changing beliefs is an easy one. It’s not. It takes a lot of time, and a lot of concentrated attention. For the first several days, if not weeks, you’ll need to keep these new beliefs firmly in mind.

You don’t need to change your behavior during this time, if it feels like “too much” — just work on the beliefs. Eventually, those new beliefs will take hold and that will help propel you into action.

Try these suggestions for helping your new beliefs to take root and displace the old, unhelpful ones:

  1. At least a few times a day, take five minutes or so to visualize your ideal vision. Try to make it as sensory an experience as possible. Feel it fully.
  2. Set aside a regular time in the morning and at night before bed to reread your list of new beliefs. Read slowly, deliberately — say them out loud, even.
  3. Consider the new beliefs in terms of your daily activities. Is there some action in particular you can take now, or change the way you perform an action, to reinforce those beliefs? If one of your new beliefs is “I am an active person,” can you find moments in your day to incorporate more activity? For instance, some light stretches in the morning when you get up, doing calf raises when you’re washing dishes, taking frequent breaks throughout the day to walk around or do pushups against the wall … even creating a new fidgeting habit … all these things can reinforce that new belief. You believe you’re an active person because you are an active person. See how nicely that works?

Get Up! But Do It Slowly, and Talk to Your Doctor First

In sum: getting active and doing some careful exercise on a daily basis will go a long way towards managing your pain. But you have to go about it the right way. The very first thing you need to do: see your doctor, and verify with her what kinds of activity you can safely do. Then, work on acknowledging your current limiting beliefs and changing them, perhaps reinforcing them by implementing new actions slowly, over time.

Sirena Dufault: A Walking Inspiration for Fibromyalgia and Other Chronic Pain Patients

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Sirena Dufault on the Arizona Trail to promote fibromyalgia awareness

Sirena Dufault on the Arizona Trail to promote fibromyalgia awareness

It’s amazing in itself, even without the backstory: Sirena Dufault, a 35-year-old woman from Tucson, Arizona, is hiking an 800-mile path called the Arizona Trail, start to finish.

What’s inspiring about it for me and thousands of others like me: Sirena has fibromyalgia.

For ten years now, Sirena has been living a life that’s familiar to all of us who’ve received that diagnosis — a life of pain, of medication, of seeking any and all treatments promising relief, of compromises and limitations.

Yet Sirena has undertaken something precious few of us could even begin to consider in our own lives: a massive, difficult physical challenge. And she’s doing it to raise awareness of what we’re forced to live with on a daily basis.

You can follow Sirena’s trip, which she plans to finish up on May 12, National Fibromyalgia Awareness Day, here at her blog. You can also read this article about Sirena’s hike for fibro at the Tucson Citizen (free registration required).

I have more to share on Sirena’s inspirational example in tomorrow’s post. Make sure to come back around noon on Friday, May 8th, to read more about movement, FMS, and courage.

Fibromyalgia and Dr. Unbeliever: A Horror Story From Texas

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@PaperBackChic on Twitter alerted the world to this story, which is linked to off the main FMS Community page.

I read it, and was appalled — you will be, too. (Or should be.) I also have questions, but first, let’s recap. From the page, which is titled “Fibromyalgia — A Horror Story,” we gather the following salient points — the names have been changed, according to the unnamed author of the piece:

  • Rita, the patient in question, has been diagnosed with fibromyalgia, a thyroid condition, and diabetes. She also has IBS (irritable bowel syndrome, which is often associated with fibromyalgia).
  • She approached the doctor in question (“Dr. Jones”) for treatment of the thyroid condition. However, Dr. Jones also knew about her earlier FMS diagnosis.
  • On an early visit, despite exhibiting some symptoms suggestive of cardiac issues, the doctor sent her husband to get an OTC medication. Yet when the husband himself showed up at another point sweating profusely, the doctor immediately ordered several tests (I’m assuming to rule out cardiac trouble).
  • The doctor told Rita that his best friend has ALS and that Rita had no right to “whine” about her problems, the clear implication being that ALS is a real disease but FMS … isn’t?
  • Despite several therapists and psychologists concurring that Rita had no psychological issues, other than the mild and occasional depressive episode that accompanies nearly all chronic pain conditions, Dr. Jones repeatedly insisted that Rita had some sort of psychological disorder. This insistence apparently was the primary focus of her visits with this doctor, instead of the thyroid treatment she had sought from him.
  • Ultimately, after an abusive visit, Rita lost her cool and said “Maybe I should stop taking my medications and die. Then maybe an autopsy would prove that I am sick!”
  • That was all the ammunition this doctor needed to have Rita held on a 72-hour suicide watch in a local mental health facility based on his insistence that she was bipolar and a danger to herself and/or others.

I won’t go into the horrors of that situation. Anyone with half a brain can imagine. All I can think right now is, “Here we go again.” But before I rant, a warning to all chronic pain patients — and a “Yeah BUT” to that warning, which is just as important — so promise me you’ll read both, OK? OK — here’s the warning:

If you say ANYTHING in front of a doctor that could potentially be interpreted as a threat to kill yourself, or harm anyone else — even if it’s said off the cuff, or in jest — you could be subjected to a hold just like Rita was.

Just don’t do it. Ever. Now, here’s the Yeah BUT:

If you are feeling suicidal, you need to tell your therapist or doctor immediately and ask for help.

I hope that makes sense. Where Rita went wrong was in assuming that Dr. Jones would act rationally, even after his refusal to treat her for the problem she came to him for — the thyroid treatment — made it patently clear that he was not rational.

Rita should also have bolted the minute this idiot opened his mouth to denigrate her, or her condition. The second he didn’t at least make an inquiry into a possible cardiac issue with her symptoms.

Am I being too tough on Rita? No, not at all — I hope it’s clear to all that the problem here was Dr. Jones, not Rita.

But here’s the thing, friends: There are LOTS of Dr. Joneses out there, and they cannot be allowed to treat us. As soon as you know or even have reason to suspect that you’ve found an Unbeliever, you need to leave.

I know it’s unfair. It’s putting the responsibility on you, the patient, instead of (pardon me) the asshole who’s causing the problem. You shouldn’t have to go find another doctor to treat you like a human being with rationality and respect.

But you do, and you must.

Guys — by which I mean ladies and gentlemen and children of all ages and their parents — we can no longer afford to mollycoddle these medical pretenders providers. I used to think the unbelievers were a small minority — a vocal one, to be sure, but small enough to ignore.

Then came the NY Times article questioning the “realness” of our very real disease. Then came another piece, this one by CNN. And now, with Rita’s story — with the story recently of a woman suffering from FMS who will go down in history as the first person in the UK with “fibromyalgia” as the cause of her death, all because her Dr. Jones thought she was crazy, too — well, folks, the conclusion is inescapable:

We are at war.

And it’s time we (by which I mean all chronic pain patients ) started getting a little more assertive about our rights and our health.

Honor Your Limits? Or Refuse to Accept Them? Some Thoughts on Chronic Pain and Personal Beliefs

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When I was first diagnosed with fibromyalgia, my reaction was surprising, even to myself. I felt this overwhelming sense of relief, pure and giddy relief. Far from being devastated by the incurable nature of the illness, or the lack of any dependable treatment (this was 10 years ago), I was so overcome with gratitude to finally, at long last, have a name for what I’d been feeling for so many months.

Since then, I’ve discovered this isn’t an uncommon initial reaction. Lots of us have been battling for so long with the naysayers, the ‘it’s all in your head’-ers, the ‘you’re just tired’-ers — not to mention the utter lack of information — that by the time we finally achieve that diagnosis and have a word to put to the horrid aches and myriad other symptoms we’ve been dealing with, we truly are relieved.

But after diagnosis, my emotional reactions to this illness’s ups and downs have been all over the map. Flares don’t always make me feel hopeless, and remissions aren’t always accompanied by contentment and joy. One emotion — or perhaps it’s better termed a belief — has been constant, though: my refusal to call myself “sick” and live squarely in the confines of my limitations.

Until now.

I’ve always been a fairly optimistic person, and when I first started dealing with fibro as a life-constant, I brought that same attitude to my treatment and daily coping techniques. I can’t say for sure that it made my experience of the pain and other symptoms any different. But somehow, I admit, it felt a bit … virtuous. As if I was “rising above” the illness.

Lately, however, the illness has risen above me. Risen above, and done a body slam on my ass, keeping me pinned to the mat. Or the bed. Or the couch. Or wherever I end up collapsing at ever-earlier hours of the ay.

A few years into my search for conservative treatments (read: anything other than prescription drugs) I read about something called “Phoenix Rising Yoga Therapy.” I’d been into yoga for a few years at this point, so this appealed to me. The idea, basically, was that a therapist/yoga instructor would work with you one-on-one, while you did yoga asanas (poses), adjusting your body and giving you light massage.

I called and made an appointment, and during our first conversation on the phone, the therapist was explaining her approach. “It’s important that we not go too far too fast, so we have to take this slowly,” she said. This rang all kinds of alarm bells for me. I blurted out, “Yeah, but my goal is to get better. I refuse to accept these limits.”

There was silence on the line.

“Hmm. I’m sure you agree it’s not smart to push yourself.”

I mumbled something like “Yeah, sure.” But the next day I canceled the appointment. I can’t explain the reaction I had to the woman’s statement. It offended me, as if she were trying to put me in a cell, or something. I know, obviously, that she was just expressing the philosophy of yoga, where it’s not about pushing the envelope but playing at the edge, and not about competition ever, even with yourself.

What I was saying was that I wanted to beat fibro — not just transcend it, but beat it, maybe literally, into the ground.

What she was saying was “this is your reality, and you can transcend it but you can’t beat it.”

And I wasn’t ready to hear it.

It got me wondering today, now that I’m several months into this … this whatever the heck this is — monster flareup? relapse from hell? — I wondered how others felt about it. So I asked the fibro-fab ladies (and one fibro-fab dude) on Twitter: “Do you honor your limits, or refuse to accept them?”

And here are some of the responses I got, all of which resonate with me deeply:

I tell everyone I know with pain to “listen to your body”, then I go & overextend my limits every time! I’m my own worst enemy.

I used to refuse to accept my limits until I wore myself down to a point where I was bedridden & completely dependent on some1. now I have learned 15 yrs later what my limits are & try to keep within them. Sometimes I push it but for the most part I dont.

I have to honor my limits. If I don’t, I wind up…well, kinda like I’ve been the past few days, totally flaring miserable!

[S]omething in between. I decide just what is worth it and what isn’t. I am not a hero.

More of the keep doing stuff until I fall over the cliff of my limits kinda guy myself. I know there there, but….aaaaaaaahhhh

What about the rest of you? Do you honor your limits or deny and push past them? What effect does it have on your experience of your symptoms?

I don’t know that I have any answers, by the way. I’m still struggling to make sense of this myself. For nine years, I adapted and adjusted and was functional. Then, last year, the rug got pulled out from under me, and I’m still trying to find my footing.

UPDATE: Almost as soon as I posted this, an email from Yoga Journal arrived in my inbox with these almost scarily prescient comments:

Are You Working Too Hard?

As hatha yogis, we work earnestly to find peace through the mind-body connection. The fruits of our practice are a direct result of the quality of our time on the mat, rather than the quantity.

If we allow our ego to lead our practice, we run the risk of overefforting and creating agitation in the mind and injury in the body. If we practice with humble curiosity and compassion for ourselves, then our bodies, breathing, and minds are more likely to become calm and peaceful.