OK, what’s up with this, Canada?

A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities aren’t recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.“At the government level, they’re invisible.”

Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as it’s feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.

“We can’t get funding because we’re not considered a chronic illness, and yet they won’t take our blood,” Saraiva says.
“We’re dealing with powerful, wealthy insurance companies who have a bottom line,” Samosas says. “A lot of people have had horrendous cases in court with CPP and fight for years.

Clinical depression often blamed before diagnosis of fibromyalgia, Healthzone (Canada)

Seriously, what gives? How about we drag you kicking and screaming into the 21st century? With all the talk about how the Canadian system is a model national health care policy, can we not live in the Middle Ages here?

I seriously doubt the U.S. is much better in its level of funding of fibromyalgia and other chronic pain research but here’s the thing: chronic pain costs money. A lot of it. Add up the doctor’s bills, the prescription costs, the lost time and productivity for businesses whose employees suffer from it … you’re looking at a big number.

Fibro and chronic pain conditions are not a “lifestyle choice.” They’re debilitating diseases, and it’s time to stop treating those of us with these conditions as if we’re lying liars who lie and just want to sit on our asses all day eating bon-bons. I don’t know a single fibro sufferer who wouldn’t give her or his right arm to be able to work and live like they used to again.

So shut up, already, and be nicer to us. It could be you in this position one day.

Read this and tell me you don’t want to go. Right. NOW:

The monsoon expends the last of its energy in the Indian state of Kerala, leaving plump raindrops on hibiscus flowers and puddles in the red mud roads. The air is thick but not oppressive, and I begin to understand the words of the local doctor, who says that monsoon season—nature’s own megacleanser—is the best time for treatment. Sipping sweet water from a tender coconut, I feel radiant from an hour-long herbal oil massage. The stiffness in my neck, which I once accepted as a necessary evil of urban living, has disappeared. Listening to the waves rolling up on the shore, I realize why this place, Kerala, is part of my treatment, too.

This, from “Taking the Cure in Kerala” from YogaJournal, makes me long for a round-trip ticket and a few weeks off. (Please note, after my frequent rants here and on Twitter against folks claiming to have the “cure” for fibromyalgia and other incurable chronic pain conditions, that I’m pretty sure they don’t mean “cure” in the Western medicine context but in the “damn, I feel nine kinds of better” sense.)

This made me think: is this what we’re all up against? Is THIS what we have to do to get better for real and for good?

Except – I already know the answer. The answer is “no.” Traveling to exotic locales and subjecting ourselves to round-the-clock spa treatments and yoga classes is not required to achieve health and wellbeing.

What is required, though, is just as out-of-reach, if you look at (A) what we as chronic pain patients know and measure that against (B) what we as chronic pain patients do.

Simply put: we know we need to change our lifestyles. But we don’t.

That’s the sad truth, folks. We all know we have to stop grinding ourselves down into a fine powdery version of our vital selves. We know we have to exercise – to move, often and every day. We know we have to cut out our bullshit and get real with ourselves and our current conditions. We know we have to meditate. We know we have to turn our backs on the sugary, chemical-laden crap in our diets and embrace organic and low-on-the-food-chain vegetables, fruits, and lean protein.

We know this stuff!

And we’re not DOING IT!

What’s the answer, then? If it isn’t a question of knowledge but of action — of actually making the changes we know we need to make — then how are we supposed to proceed here?

There’s something very romantic and enticing about “taking the cure in Kerala” — about making the grand gesture, fleeing our sad, sick lives and making wholesale change in a brand new, exotic locale.

But there’s just one problem with that (well, besides the pure impracticality for most of us and the exorbitant expense): it’s a lie. And it sets us up for failure when we inevitably return home.

It’s a lie because it suggests that the grand gesture is required — that nothing short of this kind of Eat, Pray, Love – style adventure will heal us. And that’s not true.

And it’s setting us up for failure because — well, damn, because it’s easy to put ourselves into low gear and embrace healthy living when we’re being massaged every day and don’t have to feed the kids every night.

What happens when we get back home? How successful will you be maintaining that glow of health and those new healthy habits when the pressures of daily life start clamoring for your stretched-thin attention?

Don’t wait for your ticket to Kerala to get better, is what I’m saying. Create Kerala where you are. Right now. Right this second.

Also? If you get a ticket to Kerala, can I come, too? I’m not crazy.

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!

Here’s a simple little meditation that’s incredibly powerful at helping your body release chronic pain and heal itself. It draws on the power of two of summer’s most iconic elements: the sun’s rays and the ocean’s waves.

Why Meditation Coupled With Visualization Works To Relieve Chronic Pain

Many of us resist the advice to meditate when it comes to managing our chronic pain. Yet meditation can have profoundly beneficial physical effects when it comes to our body’s ability to heal itself. When you couple meditation with visualization — the practice of envisioning certain scenes or images — you can ramp up the healing power of meditation.

Why do we resist meditation? I think it’s because it “smells” like “it’s all in your head.” Yet the connection between the body and mind is just beginning to be understood in Western medicine. Studies have shown that our brains’ entrenched beliefs can and do have powerful impacts on our health; witness the many studies that show placebos often work, even if they’re nothing more than sugar pills.

Meditation works on so many levels. First, it relaxes your body physically. Especially with fibromyalgia, our muscles have “memories” that bring them back to a painfully tense state time and again. Meditation can retrain those muscles over time to relax, which can ease the pain levels tremendously. Secondly, it works to reduce overall physical stress levels, lowering the amounts of hormones that in large quantities wreak havoc with our body’s systems. Finally, it feels good — and we can all us as much of that as we can get.

Preparing to Meditate

You need no special training or equipment to meditate. Wherever you are, whatever you’re doing (except driving a car!), you can meditate. But for the best results, try this meditation when you’re alone. You can be outside or inside, although outside would be very helpful for this particular meditation.

If you are lucky enough to have access to a beach, that’s ideal. But even if you can’t get to the ocean, you can bring the water’s healing powers to you, wherever you are. Look for a pool, or failing that, use a bathtub or even an indoor fountain.

Wear comfortable clothes (unless you’re in the pool or beach, in which case a swimsuit is best, or in the tub, in which case no clothing is necessary). Make sure you won’t be disturbed for half an hour or so.

If you’re using a tub, fill it with warm but not hot water. Add some Epsom or sea salt to the water, to make it as close to the real thing as possible. If you’re in a pool, float on your back if possible, or simply sit comfortably on a step in the shallow end, letting the water cover your feet and ankles. At the beach? Anywhere will do, but if you can move your chair, or just sit on the sand, in the surf, that’s ideal.

Lastly, if you’re outside, make sure you put on sunblock! We’ll be working with the power of the sun to heal — but we all know the sun’s rays can be dangerous to unprotected skin, too. So, lather the white stuff on, and make sure you hit the areas that we always forget — the ears, the tops of feet and toes, the scalp.

Ready?

The Summer Sun-And-Waves Meditation

Begin by relaxing your body. Focus your awareness on each part of your body, starting with your toes, moving up to your feet, your ankles, your calves, and so on, until you reach the top of your head. At each point, pause and gently (silently) tell that part of your body to relax. Continue up your body until you reach the top of your head. Relax your eyes, your mouth, your forehead, your scalp.

When you’re thoroughly relaxed, focus on the sound of the waves coming in and going out. If you’re not actually at the beach, that’s OK — just call that sound to mind. (If you have a CD or sound machine that can recreate waves, great! If not, just use your imagination and memory.) Just focus on the waves for several minutes.

Now, turn your awareness to the warmth of the sun beating down on your body. Again, even if you’re not outside, it’s OK — just visualize the sun’s rays enveloping your body in warmth. See them in your mind’s eye as golden rays of pure healing energy.

Now, begin to direct those rays in your mind’s eye to the parts of your body that hurt. One at a time, “move” the rays of golden light to target a painful area. Let the rays do their job — visualize them sinking in (only the good parts, of course — the sunblock’s taking care of the bad stuff) and working magic on the tissue, the fascia, the very cells that make up your painful muscles. After awhile, you’ll feel a distinct tingle in each area. That’s your cue that you can move on to the next painful area.

When you’ve moved the sun’s rays over every painful area, and felt that little tingle in each one, now it’s time to move on to the water portion. Bring your attention gently back to the waves — listen to the sounds of the waves coming in and going out. Really listen — note every single nuance in sound between the coming and the going until you can hear each difference distinctly.

Now, imagine that the ocean’s waves are bringing in health and wellbeing, and then they’re picking up all the bad stuff in your body that causes pain as they take that bad stuff back out to sea. Way out there somewhere is a magic well where all the “bad stuff” is deposited and transformed into healthful energy. The waves pick up that energy and bring it back in to you, in a never-ending cycle of healing. Stay with this image for as long as you can, feeling the waves bring you health and vitality and take away your pain.

After ten or fifteen minutes or so (or however long you wish to perform the meditation, mindful always of the need to reapply sunblock if you’re outside), bring your attention slowly back to your body and your surroundings. Slowly stretch, blink a few times, and massage your hands and shoulders to bring yourself back to full waking consciousness. You might feel like you just dozed off for a bit — and if you did, that’s great! Sleep heals, too. (Just make sure you don’t fall asleep in the sun without someone to rouse you in case you sleep too long.)

I’d love to hear your reactions to this meditation. Did you try it? Do you use a meditation or visualization sequence that’s different? Share it in the comments!

Why Try Conservative Measures for Chronic Pain When You’ve Got Prescription Pain Medication?

Even though this site is called “The Tramadol Diaries” — and even though I’m an unabashed supporter of better living through (appropriately prescribed and carefully monitored) chemistry — I recognize that there are people out there living with chronic pain who choose not to pursue prescription pain medication, for various reasons.

Additionally, even for those of us who do take regular doses of prescription pain meds, we still experience the occasional breakthrough pain. Then, too, sometimes we just want to take a break from all of the pills.

Conservative Treatment’s Place in a Comprehensive Pain Management Program

For all of us, there is still effective pain relief available. Remember that I went a solid four years on conservative treatments before I took anything stronger than an Aleve. To this day, I also rely regularly on an arsenal of conservative treatment options to round out my treatment protocol, and keep my fibromyalgia pain at bay sufficiently to enjoy some measure of quality of life.

Each of the following products is one I’ve used consistently over the last several years, am personally familiar with, and can (and do) personally vouch for in terms of efficacy. Simply put: they work, every single one of them.

Caution: Nothing Relieves Every Pain, All the Time

Now, that’s not to say there’s any kind of guarantee that they’ll all work for every person who tries them. Depending on your particular condition, and the specific pain it produces, certain products might work better for you than others, which may produce little or no benefit at all.

It’s all trial and error, unfortunately. I wish there were a better way, but until someone invents a 100% effective treatment that works on all pain, all the time, we’re stuck with what we’ve got.

How to Give New Conservative Pain Treatment Products a Fair Trial

So, try the ones that appeal to you, and use them for at least two to four weeks, to give each product a fair trial. I encourage you to keep notes of each trial in your wellness log (more on wellness logs can be found in this post, in item #4). Note when you try each product, how long or how much of the product you used, and what the results were.

You might also want to keep track of the time of day you use the products. I’ve found that some things work better for me in the morning, and some later in the day when my muscles are more warmed up.

Analgesic/Pain Relief Products Applied to the Body

Tiger Balm

For muscle soreness and pain, nothing will beat a good self-massage with the king of all analgesic rubs –
Tiger balm. While this is an intense formulation for some, it truly gets deep into the tissue and creates a tingling warmth that works for a significant period of time to relax and relieve twinging, spasming muscles.

For best results, I suggest either taking a warm shower or bath, or applying a hot wet washcloth to the area you plan to massage the balm into. Let the heat from the water do its thing for awhile, loosening up the muscles and preparing the skin to absorb more of the balm. Then rub a small amount into the area, using as much pressure as you can create and withstand to give yourself a self-massage while the balm works its magic.

To Buy: Tiger Balm Pain Relieving Ointment, Non-Staining, Ultra Strength, 0.63 Ounces (Pack of 2) (Amazon.com)

Eucalyptus Oil

I first came across eucalyptus oil spray in the local mall. One of those standalone kiosks that the mall rents out every so often – your mall probably has them too. I was skeptical, to say the least. But we had a half-hour to kill before the movie started, and my feet were absolutely killing me. I had plantar fasciitis — an extremely painful inflammation of the fascii tissue in the bottom of the foot, that makes every step pure torture.

The salesman offered a free demo, and it was one of those “What have you got to lose?” moments for me. I let him put a heated rice bag on my foot for five minutes (which itself felt pretty wonderful), then he sprayed the oil directly on the foot, and massaged it in.

Within five minutes, the pain was literally gone, completely. No one was more surprised than I was. I purchased three bottles on the spot, but used them all up eventually and of course, the kiosk guy moved on. Haven’t been able to find any since.

However, there is another option from Bath and Body Works, in an aromatherapy formula. While it’s not the same formula, you can use it in the same way and it seems to be just as effective as those first bottles I bought in the mall.

To Buy: Bath & Body Works Aromatherapy Eucalyptus Spearmint Relax Smoothing Oil 4 fl oz (Amazon.com) (note: they seem to be out of stock at Amazon.com, but you can probably get it at the Bath & Body Works store, too; there also seem to be a few for sale on eBay.)

Bed Buddy: A Real Friend for Painful Parts

If you’ve never tried a Bed Buddy, allow me to be the first to say: what are you waiting for?! No, not that kind of bed buddy — although that has some interesting pain relief effects too … ahem.

Anyway: this particular Bed Buddy is a long tube filled with material that conforms to the shape of your body. You stick it in the microwave for a bit, wrap it around the affected area, and lie down for a nice relaxing rest.

Because it’s not plugged in to the wall, you can safely use this at nighttime while you sleep, without worrying about burning yourself as you do with an electric heating pad.

There’s a version for backs and one for sinus pain as well, which would come in handy for me right now. (I’m truly suffering with allergies. God figured fibro wasn’t enough? Sigh.)

To Buy: Carex Bed Buddy Back Wrap and Carex Bed Buddy Sinus Pack (Amazon.com)

Defying Gravity Works Wonders on Back Pain

This one’s not cheap, but worth every penny. I bought an inversion table a few years ago, on the theory that since my scoliosis essentially crams my vertebrae together like a pinched-together Slinky toy, hanging upside down for a few minutes a day might reverse the damage and create a little more space in there.

It works. That’s all I can say. It works.

Now, you won’t see relief immediately. This is one of those treatment options you need to stay with for awhile and do consistently before you feel better. The more consistently you do it, the better the results.

CAUTION: As with all treatments, but especially for inversion work, it’s essential that you talk to your doctor first. Make sure an inversion table routine won’t do more harm than good. But if the doctor gives you the go-ahead, an inversion table is a worthy investment in your overall back health.

To Buy: There are several good options on the market. I like this one, as it’s not as pricey as some models out there but seems to be fairly sturdy construction — Stamina Gravity Inversion Table (Walmart.com)

Pillows For Better Body Alignment While You Sleep

I discovered the joy of the body pillow during my pregnancy with Kayleigh, my daughter. I suffered from severe sciatica throughout all nine months from a ruptured disk (that was later diagnosed and fixed through surgery). It made good rest almost impossible until I found these two wonderful inventions.

Body Pillow

The body pillow is basically a pillow that’s roughly the length of your body, more or less. This one’s a good 50″ in length, so it fits most heights. Curl up next to it, sleeping on your side, and the memory foam will essentially “remember” your body’s contours, supporting you where you most need it.

To Buy: 50″ Memory Foam Body Pillow (Walmart.com)

Leg Spacer Pillow

Used in conjunction with the body pillow, the memory foam leg spacer pillow can create the perfect side-sleeping body alignment for chronic pain sufferers or anyone, really. It looks weird, but fitted between your knees while you’re on your side, the pillow creates the perfect amount of space to keep your spine aligned.

Why it’s important: Without the proper amount of resistance and space between your legs, your spine essentially misaligns while you sleep, creating undue pressure on the lumbar area which can lead to increased pain in the morning and a significantly lower quality of sleep. Sleep, as you know, is the number one most important healing tool in our arsenal, as that’s when our bodies do their best self-healing.

To Buy: Memory Foam Leg Spacer Pillow (Walmart.com)

Massage Chair Cushions For Your Back Pain

I used to laugh at these cushions when I saw them being demonstrated in the malls (beside the eucalyptus oil). I don’t laugh anymore!

The larger design can fit most office chairs. As do many chronic pain sufferers, I do my work from home at the computer. Sitting for any length of time leads to stiff muscles and increased pain, but these cushions can help alleviate that cycle, making it possible for me to work for slightly longer stretches of time.

But please know that no cushion is going to counteract the effects of bad posture, improperly aligned chairs and desks, bad wrist positioning, and the lack of frequent stretch breaks away from the computers. Use the cushion in conjunction with good ergonomic design and posture practices, and you’ll definitely see a difference.

To Buy: Two versions are available that I particularly like.  I use the longer one in my office chair, and the smaller one goes with me into the living room. Some models also have car charger adapters, that let you plug the device into your car’s cigarette lighter — great for long road trips! The Homedics SBM-200H Therapist Select Shiatsu Massaging Cushion with Heat is a full size version from Homedics and is available at Amazon.com; the  Healthometer Shiatsu Halk Back Cushion Massager is a smaller version and is available from Walmart.com.

Bath Salts CAN Help Relieve Chronic Pain!

Recently on Twitter I had an exchange with a friend of a chronic pain patient who had been venting about the lack of medical support she was receiving from her community.  I had made some suggestions designed to help him help his friend start taking care of herself.

One of the suggestions was to take a warm bath with epsom salts and spend some quality time sending loving thoughts to the hurting parts. The friend dismissed this as woefully inadequate. But, as I explained to him, this practice is essential for chronic pain sufferers.

It’s really simple: when we as chronic pain patients are not getting support from our medical doctors, we tend to sink into ourselves and feel hopeless, when we most need to start giving ourselves the support we’re looking for from others.

In giving this advice, I wasn’t diminishing his friend’s pain, or condoning the actions of her physicians, but merely advocating that when we as patients begin to take responsibility for giving ourselves the support and care we need, it has a way of evoking that support from others, over time.

More importantly, though, it helps us heal – and I firmly believe that.  By telling our bodies, essentially, that we love them, that we are grateful for their endurance in the face of so much adversity, that we treasure them even though they hurt so badly, we send the signal that our health and wellbeing is the most important thing, and the body has a funny way of responding positively.

Try it yourself right now. Think of the part of you that hurts the most at this moment. If you’re feeling good, think of whatever part hurts most often. Got it? For me it’s my lower left lumbar region.

Now, let that part of you have it. Talk out loud if you can, and insult the hell out of that part of you for hurting. How dare it hurt you so badly? Who the hell does it think it is? It SUCKS! And so forth …

Next, change your body’s position. If you were sitting, try standing or lying down. Do some light stretches — anything to change your body’s physical state.

Now try talking to it nicely. Tell that part of you that you love it. Say things like “I am so grateful for you. No matter how much it hurts, you are there for me, doing your absolute best to keep me going. I appreciate you.” It sounds silly, but just keep talking this way for a few minutes.

Notice how you feel after the loving self-talk. I’ll be willing to wager that there is some positive difference — maybe not a lot, but enough to be noticeable.

Imagine if every time you usually think negative things about your pain-ridden body, you stopped immediately and started saying wonderful, loving, supportive things about it.

Imagine doing this for weeks, for months. Imagine soaking your body in love, basically, every day.

A particularly effective way to try this positive self-talk approach is to do it in a warm bath, to which you’ve added soaking bath salts designed to loosen and relieve sore muscles. The combination of the warm water, the salts, and the positive meditation truly create a relaxed physical state, allowing your body to heal itself more effectively.

To Buy: One bath salts product I think is particularly effective is the Sore Muscle Therapeutic Mineral Bath Salt (Amazon.com).

Gentle Yoga for Every Body

Finally, I can’t recommend highly enough that everyone (with your doctor’s OK, of course) try restorative yoga at least once in your life.

This isn’t the action-packed flowing yoga you probably think of when someone suggests yoga for pain relief, by the way. This is a whole different animal altogether.

Restorative yoga is all about props — pillows, bolsters, rugs rolled up and placed underneath body parts to support your weight as you relax into very gentle, very easy asanas (or poses) in a particular sequence designed to truly relax every muscle in your sore, pain-addled body.

Particularly effective right before bedtime (perhaps even right after that relaxing positive-talk bath?), a few minutes of restorative yoga can work a world of difference in your pain levels, especially when practiced consistently over time.

To Buy: There are many good DVDs out there with restorative practice sequences. One I can recommend wholeheartedly is the Deborah Donohue Restorative Yoga Practice DVD (Amazon.com).

Final Tips: How to Get the Most Out of Conservative Pain Treatments

Finally, let me leave you with these suggestions to help your conservative treatments work more effectively.

1. Don’t expect miracles. By and large, conservative treatments will not be as effective as serious pain meds. Don’t go into a particular treatment option with the expectation that it will work so well that you’ll be able to stop taking your tramadol or percocet or whatever.
2. Conservative treatments are about management. Keep that in mind as you try new things.
3. Give any new conservative treatment at least a few weeks before giving up on it. Some treatments require more time. Be consistent in your approach.
4. Try just one new thing at a time. This way you’ll know what’s working if you experience measurable relief.
5. ALWAYS talk to your doctor first!

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!

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.

@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.

Talking To Your Doctor About Chronic Pain Is Hard

UPDATE: This post has been updated with links to additional tips from About.com and an organization called Speak Up. See the end of the post for the links!

If you’ve ever had the experience of talking to your doctor about your chronic pain condition and feeling distinctly unheard, this post is for you.

Why Communicating About Pain Is So Difficult

Pain is, by nature, a subjective experience. We know that, even with the same diagnosis, any two patients may well experience their symptoms in quite different ways. Even within the same patient’s experience, the perception of pain level, intensity, and quality may differ wildly from day to day.

Add to this subjective nature the sometimes-significant impacts that outside factors may have on our pain levels — diet, exercise or movement, mental stress, difficult relationships, sleep quality/quantity — and it’s no wonder that we have trouble expressing our pain.

But communication requires two actions — talking and listening/interpreting. As hard as it is for you to explain your pain to another person, it’s equally hard for the second person to interpret what you say “correctly.” Even using that tired old trope, the 1 to 10 pain scale (which, for many reasons, ought to be done away with completely), isn’t much help.

For instance, you and I may both say we feel our fibromyalgia pain at a level of 8. But who’s to say that your “8″ is my “8″, or equivalent to it? We can’t know that. All I can take from your statement that “My pain is at a level 8″ is that, for you, at this moment in time, you’re about two steps away from feeling complete and total agony, and about eight steps away from feeling no pain at all — whatever that means to you.

Doctors Ought to Be Different

None of which is to say that your medical professionals should be given a pass on taking your pain seriously. Doctors can and ought to be different. With their years of medical training and hands-on experience with both acute and chronic pain, our physicians must be held to a much higher standard of communication and empathy.

Yet, too often, we all hear stories about how doctors — even those who have treated patients for years before the onset of the chronic pain condition — dismiss patients’ reports of chronic pain as being “all in your head” or “stress-related” or worse.  It’s no secret in the fibromyalgia community, for instance, that many MDs and nurses think that any fibro patient who asks about medication is simply drug-seeking.

You don’t need to walk a mile in a fibromite’s shoes to know that this is true. Look at any episode of just about any medical drama on television where reports of mysterious pain play a part in the patient of the week’s diagnosis. See how they roll their eyes, or dismiss the reports completely if the MRI is “clear.” This is deeply ingrained and it’s insidious.

Fear of Legal Repercussions Among Physicians For Prescribing Pain Medication

Then again, doctors have a not-completely-irrational fear of prescribing  medication for chronic pain. Reports of doctors losing their licenses or even facing criminal prosecution for prescription practices are all too common. Some of these prosecutions are, undoubtedly, warranted. But whether they are or aren’t is almost beside the point; the impact on other physicians is a definite chilling effect on the whole notion of medicating against pain.

If the war on drugs makes doctors squeamish about treating chronic pain assertively, then it only stands to reason that they’ll be less receptive to taking pain reports seriously. Some MDs attitudes seem to be “If I can’t treat it, it isn’t real.” Of course, that’s nonsense, but even so, a subjective fear can and will affect a person’s willingness to enter into an open dialogue about that subject. We don’t want to face what we can’t control. Perhaps this is even more true for physicians who are trained and groomed to take almost godlike control over their patients’ physical processes.

Seven Steps to Make Talking to Your Doctors More Effective

Have hope, however. There are things you can do to make communication with your physician more effective. Seven suggestions are listed below.

1: Come Prepared

Sitting in the waiting room, flipping through magazines that are three years old – now is not the time to start thinking about what you want to say to your doctor! Start preparing for the next doctor’s visit on the day after the last visit, ideally. At a minimum, take a half-hour or so to jot down your questions and concerns the day before the visit. Then, sleep on it. Give yourself some time to think of the four or so things you left off the list due to your fibro fog!

2: Bring The Logbook

One of the most useful tools in the chronic pain patient’s arsenal is The Logbook. You can call it a diary, your notes, a list, or Babe the Pig if you want, but whatever you call it, KEEP ONE.  Whether it’s a separate legal pad, a computer file, a composition book you “borrowed” from your kid’s school supplies, or the back of a napkin, it’s a very handy thing to have.

In it, you’ll want to note, on an ongoing, daily basis, the following information:

• basic information about your diet
• list of medications/supplements you take, including dosages and times
• brief mention of symptoms and description of their intensity, frequency, duration, and nature
• information about the quality and quantity of your rest
• a list of any exercise and/or movement you undertake
• your emotional/mental state (it’s just as much a part of your health as your physical pain)

While it’s a lot of work to keep all this information updated every single day, it will truly be an invaluable resource for both you and your doctor. It’s worth the trouble to keep this logbook going and constantly updated. (Mine is a dedicated moleskine journal. I get them in packs of three for about $12 from Amazon.com.)

3: Do Your Research …

Before you go to the doctor for your next visit, take your list of questions that you prepared in step #1 and sit down in front of the computer for a half hour or so.  Look for reliable information about any new symptoms you’re experiencing, or medications you may have heard about, or side effects that you’re concerned about. Note those in your logbook.

If you really want to help your doctor (or eliminate all of his/her excuses!), take in printed copies of your resources. Print off the page from the website, showing the URL, and hand that to him/her at the examination.

4. … But Use Some Common Sense

When you’re looking at new resources, especially ones on the web, please keep in mind a couple of points. First, anyone can write anything on the web. There are no checks and balances, and this means that there is a lot of really bad, if not downright harmful information floating around out there.

Second, with printed resources that are conventionally published, manuscripts typically go through some kind of vetting or peer review process, especially with medical issues. While this process is far from infallible, it does tend to give the conventionally published book a bit more authority, or at the very least, the appearance of more authority, than does “Joe’sFibroPage.com.”

So pick your resources carefully, and recognize upfront that your MD may well be skeptical, with good reason.

5: Respect Your Doctor’s Education and Experience

I can already hear some hackles being raised out there. But hear me out – there’s a very practical reason why you don’t want to go in to a doctor-debate all hotheaded, indignant, and dismissive.

Your MD went to school for a long time before he was even allowed to call himself a doctor. That was followed by years of interning and residency, and possibly a long board certification process as well. He is not a god, no matter what he may secretly believe. But he is a human being with a certain amount of expertise, and he is entitled to a modicum of respect, at the very least.

If you reject that out of hand, fine, but consider this: how would you react if someone came up to you and in a confrontational, accusatory tone began an argument with you? When that person began dismissing your opinions and getting very defensive, how do you think you’d feel about continuing the discussion with him or her?

Resist if you like, but good communication skills require a courteous, respectful tone.

6: Demand the Same From Your Doctor

While it’s important to keep your cool when speaking with your doctor, and to use a courteous, respectful tone, it’s also important not to inadvertently teach your doctor to abuse your good nature. If things get out of hand — if the doctor says something inappropriate, for instance, or begins to dismiss you before the discussion is through — you’re going to have to speak up.

For some folks, this is no problem. But for many of us, speaking up in this situation is downright scary. If you feel you might want to run and hide, or avoid the conflict altogether, it’s best to spend some time with a friend or family member roleplaying this scenario before the doctor’s visit. This will give you some practice thinking on your feet, and simultaneously getting comfortable standing up for yourself in difficult situations.

Then, if the worst does happen, you can pull yourself up straighter, adopt your “I’m serious and you’d best listen” face, and say:

• “Respectfully, doctor, if you cannot take my symptoms seriously, I will be forced to take my medical files and find a physician who is more equipped to treat my case.”
• “Doctor, I have no problem having a healthy discussion, even if we disagree. But I will not be spoken to condescendingly, and I will not be dismissed. If it happens again, I will leave and I will take my files with me to find a doctor who knows how to communicate respectfully with patients.”
• “Excuse me, I’m not finished yet. I’d prefer to discuss these concerns with you now.”

One word of caution: if you issue an ultimatum (as the first two examples do), you must be prepared to follow through with it. I could write an entire post just on this point alone but for now, know this: it’s your body. Your money. Your life. You are entitled to be treated with respect and to have your concerns taken seriously by your treating physician. You owe him nothing more than respect and payment for services rendered. That’s it.  If he isn’t willing to live up to his end of the bargain, you have no choice but to find a more honorable doctor.

End of sermon.

7: Take a tape recorder, or another person.

This is probably the single most helpful tip I ever received as a patient. When you’re stressed out about your illness, nervous about having this discussion in the first place, and probably in pain to boot, you’re probably not going to be listening as carefully as you’d like.

You could take notes with pen and paper, but that takes you out of the conversation. You have to stop listening fully, in order to think about what to write, and then write it down. Then it takes a bit of time to get back in the conversation. It’s just not effective, especially when doctors are limiting their time with patients.

The solution: tape record the conversation, or have someone else there to take notes and act as a backup to your memory. If you’re concerned about bringing either another person or a tape recorder into the conversation, please know that most all doctors are used to it, or at least won’t be surprised by it. Many physicians advocate the practice themselves. They know it’s a lot of information to take in at a stressful time.

Simply make sure you ask if it’s all right with the doctor if you record the conversation (or have your friend take notes). Almost all doctors will say “sure, go ahead.”

What do you do if they don’t — if they protest, or say they’re not comfortable with that? Well, you have a few options. You can insist. You can walk out. You can give in without another word. Or, you can ask your doctor for more information. What bugs him specifically about the recorder? Why does she not feel comfortable with another person in the room? Then you can address the real concern.

If you can’t reach an agreement, then you’ll have to consider whether this doctor is the right one for you. Personally, I’d be a little suspicious of a physician who adamantly refuses to let me have a little backup in the exam room.

Conclusion: Speak Out!

Talking to your doctor about your pain is unquestionably difficult, but it’s not impossible. Follow these seven tips and you’ll be more comfortable with it on the next visit.

What do you think? What do you do to help your doctor understand your pain? Have you ever had a doctor dismiss your pain? How did you handle the situation?

UPDATE

Take a look at About.com’s Fibromyalgia and CFS Blog for some more tips on communicating with your doctors. Also, visit Speak Up’s website – this is an initiative from The Joint Commission with the mission to improve communications between patients and doctors. That site’s also been added to the Resources page here at The Tramadol Diaries.

If you haven’t checked out the list of web resources for chronic pain survivors here on The Tramadol Diaries, I’d like to encourage you to do so now. Take a look, and tell me what I’ve left off. I know there are tons of sites out there, but I need your help identifying the best, most reliable, and current blogs and websites that pertain to chronic pain, or to any individual chronic pain condition.

Today, I updated the list with a few medical information sites pertaining to fibromyalgia and ME/CFS. I’m especially interested in hearing from patients of other illnesses who can tell me what sites have helped them in particular.  So, take a look at the resources list, then drop me a line through the contact form on this site and tell me: what did I miss?