Category Archives: Diet and Exercise

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

2 Replies
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?

2 Replies

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)

Crocs = Footsie Heaven For Chronic Pain Patients — HUGE Sale On Now!

1 Reply

I know Crocs aren’t exactly high fashion, but dang, those things make my feet feel good. I don’t know about you guys but when my scoliosis-triggered leg nerve pain extends down into my feet, I just don’t want to get on them at all. It’s couch time for me.

But Crocs — while they don’t fix every problem, they certainly make life on my feet easier by leaps and bounds.

So, I was super excited to see this cross my inbox today:

Buy Two or More Pairs at Crocs.com and Get 50% Off! Offer ends: 6.22.09

(Remember – that’s an affiliate link. Costs you nothing, but helps me feed my kid!)

Half off. Yep, you read that right. A full 50% off all Crocs purchases when you buy at least two pair. But hurry, because the sale ends June 22nd. Grab ’em while you can! It’s not just one style either. You can buy Islanders, Ace Golf, Ace Boating, Athens, Kid’s Athens, Women’s Mary Janes and Girl’s Mary Janes, and any combination thereof — as long as you buy at least 2 pair, your purchase will be half-price.

These are great shoes for a walking program, by the way (and walking is one of the most recommended forms of exercise for chronic pain sufferers who are able to do some form of exercise).

Half off. Wow. Can’t beat that with a stick, even on my good days!

Welcome to Chronic Pain: Ten Tips For the Newly-Diagnosed

4 Replies

For those of us who’ve been living with ME/CFS or fibromyalgia or any other chronic pain condition for a few years, it might be hard to recall those early days after we were first (finally!) diagnosed.

But for those people who have just gone through that experience, you may be feeling a myriad of competing emotions, stirred together and topped off with a healthy measure of “What the heck do I do now?”

Here are ten tips to help you manage the confusion and overwhelm following a diagnosis of a chronic pain condition.

1: Understand Your Chronic Pain

While it’s unquestionably true that the experience of a chronic pain condition can vary drastically from person to person, you should take time now to find out what you’re dealing with, as soon as possible. Find out as much as you can about the “usual” progression of your disease or condition, as well as the range of symptoms and associated conditions you might expect along the way.

Knowing what to expect is important when you’re beginning a long journey with a new condition. You’ll find out soon enough that every new ache and pain and discomfort can soon make you nuts, wondering “Is this something to worry about? Or is this just part of my condition?”

If you can get as much information as possible at the outset, you can save yourself some anxiety, and make better decisions about your medical care.

2: Stay As Active As Possible

Study after study shows the benefits of light exercise for chronic pain patients. (Just this week, we hear news of a study showing adolescents with fibromyalgia experience less pain if they maintain some level of activity — Doctor’s Guide, via Fighting Fatigue.

Good choices for those living with chronic pain conditions include walking, swimming, yoga, and Pilates. Start with a one-on-one class, if you can — and if your area is lucky enough to have such a person, find a teacher with experience dealing with students who have chronic pain conditions. (Tip: Identify all area yoga teachers, for example, then call each studio and ask if any teacher there has dealt with your disease or condition, either personally or through students.)

For more on getting an exercise program in place while you’re coping with chronic pain, see my recent post “Exercise and Fibromyalgia: A Love/Hate Affair.”

3: Make New Friends Who Know What You’re Going Through

Support groups can help — but they can also hurt. Be careful with this one.

Here’s why: How we talk to ourselves about our pain has a definite, measurable effect on our perception of that pain. Given that we all have a right to put a voice to our pain, to tell our stories and have them understood, a support group would be a natural way to explore that process.

However, the catch is that when we all tell our similar-yet-different stories, we’re all susceptible to a perceived or real increase in pain.

So, it’s important to find a group that encourages healthful, positive ways of dealing with the disease.

This is not to say that you should tell your story only to Pollyannas, who will then tell you to smell the roses and just get moving or try this, that, or the other alternative treatment and you’ll be right as rain. That, to my way of thinking at least, would be worse than being hyper-aware of my pain, frankly.

What I am saying is this: look for a group that focuses on solutions — that allows its members to freely discuss their stories and rant and rave if they like, but that, in the final analysis, wants to help each other do better.

That’s real support. Otherwise, it’s just a bitch session over coffee and for that? I have my best friend.

4: Keep A Wellness Log to Track Your Symptoms

Get in the habit of keeping a daily record of your symptoms, together with any factor that can affect your experience of your pain. You can do this in a computer file — a plain text document, for instance, or an Excel spreadsheet if you’re feeling really ambitious.

Or you can get a simple flip-top reporter’s moleskine, which is what I use. Here’s an example of this model, from Amazon (affiliate link).

At a minimum, you should track:

  • Your daily food intake
  • All medications, including time and dosage
  • All supplements you take, including time and dosage
  • Your sleep — duration and quality
  • Your activity level, including household chores and more formal exercise
  • Any significant alterations in mood and stress level
  • And, of course, your symptoms, preferably ranked on some sort of numerical scale

A note about pain perception scales: whether you use the traditional “1 to 10” or some other model, ranking your pain is not about minimizing it or defining it. Rather, it’s merely a useful tracking tool for you and your physicians to be able to see changes over a period of time.

For instance: if you experience a flare-up within 24 hours after you attend a particularly strenuous yoga class, and this continues to occur as a pattern, you can make an informed choice about whether a more slow-paced or restorative class focus might be more beneficial to you.

5: Talk To Your Family & Significant Other About Your New Journey Together

Get those close to you on board with the concept of this new experience as a marathon, not a sprint. It will affect all of you, and you should start now to cultivate a habit of open, honest communication with them about your condition.

Sit down with them for an extended “family meeting” and make sure you cover the following points at a minimum:

  • Your diagnosis
  • Your prognosis
  • Likely symptoms you may experience — even if you’ve had them already, you need to make sure they understand, very simply, how you feel
  • What they can expect from you
  • What you need from them

Cultivate a “team approach” right from the start, and then when things inevitably get more stressful down the line, you’ll all feel more comfortable having an honest talk about it sooner rather than waiting until feelings reach the boiling point.

6: Monitor Your Sleep

Changes in your condition often manifest first in your sleep patterns. Note these changes on a daily basis in your wellness log, but also pay attention to your “sleep hygiene” — the practices and “rituals” you’ve developed, sometimes unconsciously, surrounding your nightly sleep.

In many cases, simple adjustments in your nighttime rituals can enhance the quality of your sleep. But first, you have to know what you’re doing now.

Take note of whether you read or watch television; what you read or watch; what music you listen to; the temperature of the water if you take a bath; how close to bedtime you last ate or drank anything; how often you get up to go to the bathroom at night …

These and other factors can indicate a potential problem with your sleep patterns, and you can then work to change those rituals to increase your body’s chances to heal itself while it rests.

7: Revise Your Expectations of Yourself

While I don’t advocate thinking of yourself as a victim or a patient, you will have to wrap your brain around a changed reality, at least for the time being.

Normally, by the time you reach a diagnosis, you’ve already had some period of time where you’ve experienced the pain symptoms. But it’s all too human to think “This is just temporary. As soon as I find out what it is, I can cure it and I’ll feel all right again.”

Of course, everyone hopes that’s the case. But the sad truth is that with most chronic pain conditions, we have no cures. We have treatments, and many of them may offer substantial relief.

But even the mere act of finding those treatments that are successful for your disease can be quite exhausting. So lower your expectations of yourself for awhile, while you get acquainted with your condition and your changed reality.

8: Clear Your Plate

Healing from a chronic pain condition takes an awful lot of energy. Don’t let self-imposed feelings of obligation diffuse that energy unhelpfully.

Think carefully about obligations you’ve incurred in the past, and ask yourself a hard question: If this obligation presented itself to me today, would I say “yes”, knowing it takes energy and time away from my efforts to heal?

Some obligations you can’t — and don’t want to — give up. Although child care is a taxing prospect even for the perfectly healthy, for instance, I’d never let my child live somewhere else, even though she has many relatives who love her dearly and would care for her if I couldn’t.

The truth, for me, is that caring for my daughter gives me as much joy and pleasure as it takes away in energy or time. So — again, for me — this is not an acceptable obligation to walk away from.

But a great many of your obligations can and should be renegotiated. Your priority must be your own health. Don’t just give lip service to this idea. Do yourself the honor of making this a true commitment, and let go of those things that impede your progress where you can.

9: Practice Radical Self-Care

Taking care of yourself is about to take on a whole new meaning for you.

Radical self-care is all about protecting yourself, knowing that when we put ourselves first, we are then more capable of helping others.

Radical self-care is a concept that deserves a more thorough treatment than a single mention in one post, and it’s a favorite topic of mine that I’ll address in more depth in future posts. For now, just be aware of what it encompasses:

  • Eating the highest-quality whole foods you can afford and drinking the most healthful beverages only
  • Taking total care with and paying perfect attention to your medications and supplements
  • Dedicating sufficient hours to restful sleep in the most serene, comforting environment you can manage to create
  • Daily meditation (and prayer, if it comports with your spiritual beliefs)
  • Daily movement and light exercise — always honoring your limits
  • Integrity in your commitments to yourself
  • Managing your expectations of yourself
  • Maintaining positive self-talk (see the next item in this article)
  • Practicing impeccable hygiene on a daily basis

10: Learn and Change Your Inner Monologue

The words we use in our thoughts and the long-running “tapes” that keep playing in our heads have real, concrete effects on our physical lives.

Pay some cold, hard attention to the inner monologue you’ve got running now. Is it full of hopelessness and despair? Is it based on fear?

If so, welcome to the human race. It’s only natural, once the giddiness of finally obtaining a name for the mysterious beast you’ve been fighting for so long evaporates, to find yourself focusing on the end game and wondering just how long you’re going to have to struggle with this pain.

While it’s perfectly understandable, and you should absolutely acknowledge and deal with all your feelings, including the so-called negative ones, you should take care not to allow those feelings to become the source of your inner self-talk.

Take some time every day to counteract those normal feelings of anxiety and worry with positive imagery and messages.

Tell yourself the truth — you don’t know how long this will last but you are doing everything humanly possible to manage it and heal from it. You’re taking radical care of yourself, you’ve put yourself and your own wellbeing ahead of everything, you’re in the process of renegotiating obligations that prevent your healing, and progress is being made every single day in the fight against chronic pain.

Let that be your gift to yourself. It really does help keep your energy and your spirits up — and yes, it does make a difference in how you manage and deal with your chronic pain.

To all my fellow old-timers, what did I miss? What advice would you give the newly diagnosed? Leave your suggestions in the comments!

Exercise and Fibromyalgia: A Love/Hate Affair

5 Replies

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

2 Replies
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.

Big Dreams, Small Mercies: How to Set Goals When You’re Living With Chronic Pain Conditions

1 Reply

Whether it’s the desire to lose 20 pounds for your high school reunion, or the determination to find a job that ignites your passion, goals don’t cease to be a part of your life when you’re diagnosed with a chronic pain condition. Often, our broader lifestyle-related goals are at first put on hold while we research the new universe we find ourselves in, and are supplanted while we seek the treatments that work, the accomodations that let us do our jobs, or continue to earn a living after being forced out of a job that no longer fits, and the means to that most cherished goal for the chronically-pained: a good night’s sleep.

Don’t Be Afraid of Big Dreams

It might seem impossible, while you’re consumed with achieving some minimal measure of quality of life, to even contemplate setting big goals, much less setting out to achieve them. But every big goal must begin with a big dream. When we give up on big-dreaming itself, it’s a signal to our subconscious minds that we’ve accepted the severest of limits for our lives.

Allowing our imaginations to run freely, we send a very different signal to ourselves — that we’re not in this just to “get out alive” (because, after all, no one does in the end), but to feel joy, to enjoy life to its fullest — in short, to thrive.

Credit Where Credit’s Due: Acknowledging Small Victories With Chronic Pain

At the same time, we don’t really give ourselves sufficient credit for the small goals we’ve already met along the way. Something as small as figuring out a better yoga posture adjustment that takes into account our particular symptoms, or even getting up and taking a shower on some days, should be acknowledged as a goal set and met.

One way to get a better perspective on your little victories is to take a few moments at the end of each day and jot down in a journal three or four things you did that day of which you can be proud. Review past entries on occasion, especially when you’re feeling a little less than effective on bad days.

Making Goals SMART

If you want to try setting some goals, while taking into consideration your chronic pain, then be SMART about it!

  • S = Specific: Make sure your goals are specific, not general and vague. “Lose 10 pounds” is specific; “lose weight” is not.
  • M = Measurable: How will you know when you get “there”? Measurable goals suggest their own tracking methods. Again, “lose 10 pounds” is measurable — simply get on the scale. “Feel better” — not only vague, but how exactly would you measure “better”?
  • A = Action-Oriented: Choose goals that require some action on your part, not goals that are wholly outside your control.
  • R = Realistic: Finding a cure for fibromyalgia is specific, measurable and definitely action-oriented, but is it realistic for you at this time in your life? I’m not advocating “dumbing down” your goals, at all. But don’t set yourself up for failure right at the start.
  • T = Time-limited: Select a reasonable time period in which to make progress or achieve your goal. Deadlines give us a little beneficent pressure which can keep us highly motivated to stay on track.

Should you select one goal to begin with? Many coaches advocate this as a way to maximize your chances of success. My advice: it depends on the nature of your goal. Some goals, including many physical goals such as losing weight, or starting an exercise program, can be achieved at the same time as other, more complex goals. Use your common sense and self-awareness. If you don’t think you’ll be able to stay on track with more than one goal at a time, then just choose the most important. Otherwise, feel free to explore a few at a time, as long as they are personally meaningful.