Category Archives: Managing Your Condition

Woman Meditating Against a Globe Backdrop

Meditation 101 for Chronic Pain Management

In previous posts, we looked at whether meditation works to relieve chronic pain as well as the science behind meditation’s efficacy as a pain treatment option. In this post, we’ll look at some simple ways to implement a meditation practice into your own pain treatment program.

Woman Meditating Against a Globe BackdropMeditation: How New Age Do You Want to Go?

You may well be relieved to discover that when it comes to meditation, there’s absolutely no need to go the whole “crystals, rainbows, unicorns” New Age route. I mean, you can, if you want to, but you don’t have to.

Personally, I find a few well-placed props that help set the mood to be a welcome addition. Soy candles and the occasional incense stick or powder in a darkened room with a little spa-type music playing in the background help my way-too-active  consciousness let go of its death-like grip on controlling my life and embrace relaxation.

Do be careful about using incense, though, especially if your respiratory system is in any way compromised.

But if that makes you uncomfortable, or merely roll your eyes mightily, then rest assured: no New Age props are required. Neither is chanting “Om” or anything else.

Meditation is simply the act of focusing your thoughts, or alternatively letting go of the need to obsess — the act of utter relaxation, tuning in to your body and mind, and allowing yourself simply to be in the moment. Sometimes props help with that, but if you find yourself uncomfortable at the thought of all the trappings, then don’t go that route. Just wear comfortable clothing, unplug the phone (and turn off the cell), get quiet and sit.

How to Meditate

Meditation is not some weird, scary thing. It’s something you already know how to do, but in a possibly new context.

You can meditate in any number of ways:

  • Visualizing some desired outcome or a peaceful natural setting
  • Counting your breaths
  • Focusing mentally on one phrase or word
  • Simply sitting and allowing your thoughts to float away like butterflies

There are also more advanced techniques you can pick up from traditions like yoga or Transcendental Meditation, or other practices. But for our purposes, we’re going to outline a simple breath-focused practice that I use to help manage my pain.

What You’ll Need to Get Started

  • Comfortable clothing
  • A comfy place to sit that supports your back (lying down isn’t advisable, at least at first, as it can signal the body it’s time to sleep — and since chronic pain patients are often sleep-deprived, this will be counterproductive to meditating; however, you can practice a form of this meditation lying down in bed before you sleep, and it should improve the quality of your rest)
  • Silence — no interruptions of the human or electronic kind
  • If you like, you can use New Age or spa background music. I advise against candles at first – you might find yourself worried about a fire starting, especially with your eyes closed

The Practice

Get comfortable – either cross-legged, perhaps with pillows supporting your knees, or with your feet on the floor. Cover yourself with a blanket if you’re the least bit cool. Place your hands in your lap, palms up, left hand on top of the right, so that your hands are basically right in front of your pelvis.

Close your eyes, and:

  1. Phase One: Breathe. Just breathe. In and out, without trying to control the breath. Turn your awareness to your scalp, and check in with your body there. How does it feel? Don’t try to change it, just observe. Then slowly scan your body, moving from the scalp to the forehead, to the eyes, the chin, the neck, the shoulders, etc. – all the way down to your toes. This doesn’t have to take a long time — just check in briefly, observe, and move on.
  2. Phase Two: Focus on the Hurting Parts. Find the part that hurts the most from your body scan in Phase One. Settle your awareness on this spot. Talk to it silently — not the way you usually do (“God, I hate you! Why do you HURT all the time?!”) but as if that body part were a small child in pain. What would you say to that child? You wouldn’t tell her you hate her! You’d comfort her. You’d tell her how much you love her. You’d say how sorry you are that she hurts. You’d tell her how proud of her you are. So say that to your in-pain body part. Offer it love and compassion.
  3. Phase Three: Rinse, Repeat. Do the same for any other intensely pained parts of your body.
  4. Phase Four: Envision Health. Now, bring your awareness back to the center of your self — somewhere around your solar plexus, usually, but wherever feels “right” to you. Allow an image of perfect health — your perfect health — to come to mind. See yourself doing the things you long to do, feeling great, moving easily. Try to bring as much sensory awareness into it as possible — not just sight but scents, the sensation of touch, sounds, tastes. Make it as real as you can. Stay with this image for as long as you can, up to ten minutes or so. When you’re ready, imagine that scene in your mind being enveloped in a glowing golden-pink bubble, and floating up to the universe where it will start to gather energy and begin to manifest. (Or if that’s too “whoo-whoo” for you, then just let it fade.)
  5. Phase Five: Coming Out. Don’t rush the re-entry! Once you’ve let go of the vision of health, slowly bring your awareness to what’s going on around you — but don’t open your eyes just yet. Take a minute or two to become aware of your surroundings. Then slowly open your eyes. You might find it helpful to shake your hands vigorously for a few seconds to ground yourself again. Drink some water, get up and move around — basically, reconnect to your body.

That’s it.

This practice can take as little as ten minutes or as much as an hour – it’s totally up to you. Better to do it for a few minutes every day, than for an hour once a week, though. Set your schedule, ease into it if you must, but try to do it daily.

The Benefits

What can you expect from a regular meditation practice? It varies from person to person, of course, because we’re all different, but basically you can expect:

  • Heightened sense of connection to your body
  • Lessened pain
  • More restorative sleep
  • Lower blood pressure
  • Reduced stress
  • Increased ability to deal with flareups of pain and stress

That’s worth giving meditation a good trial run, isn’t it?

Photo Credit: AlicePopkorn via photopin cc

Dependence Is Not Addiction

It’s no secret I’m a fan of tramadol. Hell, it’s the name of my site. Those little white pills saved my life. So it should be no surprise that I’m all for prescription pain medication when it’s used appropriately.

And it should be no surprise that one of my pet peeves is the fear-mongering that runs rampant and unchecked in the medical community that stops professionals from  prescribing pain meds to treat chronic pain assertively.

What’s behind this insane aversion to the pills? I think there are a couple of things at work here. One is that somehow, we’ve abdicated responsibility for medical decisions to law enforcement officials. That’s messed up.

Another is this ineffective, wasteful “war on drugs” with its screwball insistence on locking up as criminals those who merely use, alongside the devils that push the crappy stuff on them. It’s swept up legitimate uses of pain medication along with the highly-publicized legitimate cases of prescription pain med addiction and the street-drug abusers.

And finally, I think there’s a fundamental misunderstanding that fuels this mess: too many folks are confusing dependence and addiction.  Need proof? Here’s a page on drug dependence from the University of Maryland Medical Center — and look at the very first sentence:

Definition of Drug dependence:

Drug addiction, or dependence, is the compulsive use of a substance, despite its negative or dangerous effects.

Right there, in the very first sentence. A medical university gets it wrong. Now, true, in the next few paragraphs, it hedges the bet a bit:

However, a physical dependence on a substance (needing the drug to function) is not always part of the definition of addiction. Some drugs (for example, certain blood pressure medications) do not cause addiction but they can cause physical dependence. Other drugs cause addiction without leading to physical dependence. Cocaine is an example.

But it’s too late. The damage has been done. The first sentence makes it clear — “drug dependence = drug addiction.” The subsequent qualifications are too little, too late.

What’s the Difference Between Dependence and Addiction?

So what exactly is the difference between being dependent on a drug and being addicted to it?

  • Dependence is a normal physical condition, while addiction is an abnormal psychological condition.
  • Dependence simply means your body has grown “used” to the drug; addiction means you psychologically crave it, usually in higher and higher doses.
  • Dependence does not in and of itself interfere with your daily functions and life; addiction devastates.

We, as the fibromyalgia and chronic pain community, simply must do a better job of educating the world about this distinction. We need to speak out when our friends get it wrong. We need to write to editors of newspapers whose journalists get it wrong. We need to — yes! — correct our own doctors if need be.

The reluctance to speak up is completely understandable. None of us wants to be labelled an addict or drug-seeking (the medical profession’s cute little label for anyone whose pain they don’t quite understand — basically, a less emotionally charged way of calling someone an addict).

There’s so much stigma in this society against pain medication that when we speak up for any aspect of it as a treatment option, we’re automatically aware that somewhere, in some file, there’s a giant red asterisk being placed beside our names.

But we have to get over that if things are to change. The actual risk of addiction has been proven to be quite low, and when no conservative measures are working, why on earth should we be required to hurt like hell — often becoming nonfunctioning and disabled in the process, thereby putting an unnecessary drain on government resources — when we don’t have to be?

I do believe that lifestyle changes can hold chronic pain at bay in many instances — but not all. Why should we be forced to hurt like hell while we make those changes? All because some people don’t understand that dependence does not mean addiction.

I realize others may disagree with me strongly. If you’ve ever had a family member addicted to any substance, as I have, you may well be experiencing a strong emotional reaction to what I’m writing here. That’s fine.

Please understand: I’m not saying addiction to legal prescription pain medication does not exist. I’m saying it’s not a foregone conclusion, and it’s not a sufficient reason for chronic pain patients being forced to rely on ineffective conservative treatments, when there are legitimate medications that make them feel better and give them their lives back — which is exactly what tramadol did for me.

Carved stone Buddha sitting in meditation

How Meditation Relieves Chronic Pain

In order to understand the process by which meditation works to improve our experiences with chronic pain, we should examine the evidence supporting the premise itself. In short: how do we know that meditation works at all?

Carved stone Buddha sitting in meditationStudies Establish Meditation’s Effectiveness in Chronic Pain Management

Numerous studies have consistently found the same thing: meditation works on chronic pain — not just in our emotional reaction to it, but also the pain itself.

One study, published in the Journal of Neuroscience (Feb. 2008), found that chronic back pain patients demonstrated an always-active area in the frontal cortex associated with emotion, whereas healthy brains (in healthy non-pained patients) show those areas “go dark” from time to time. As columnist Jackie Gingrich Cushman notes in this article, meditation can help train the brain over time to “take a break,” as it were.

A Canadian physician found in one study that meditation of 10 to 20 minutes a day, over a period of ten weeks, significantly helped many patients to manage their pain. One participant, whose pain was so intense that she’d even considered suicide, noted she was “shocked” at how significant the impact on her pain was. (You can read more about the mindfulness method developed by Jon Kabat-Zinn which was used in the Canadian study here at NPR.)

In fact, Kabat-Zinn is somewhat of a pioneer in this area of study. His own studies served as the catalyst for many subsequent researchers. The abstract from one of those studies is here at his site, Wild Mind.

Another fibromyalgia study, this one conducted in Switzerland at the University of Basel Hospital, showed that a mindfulness meditation program yielded several key benefits in patients, including pain-induced suffering, anxiety, and depression. A follow-up three years showed continued benefits for those who stayed with the process.

Studies have also shown that a relaxed mind, one of the major benefits of meditation, is more capable of remembering and processing information, which might help alleviate that fibro fog and similar fuzzy states of mind we all hate so much.

The Mechanism Behind Mindfulness Meditation’s Impact on Chronic Pain

To get to the “whys” and “wherefores” we should review what happens in a normal pain response in a healthy individual:

  1. A painful stimulus is applied — be it a hand on a hot stove or an injury in a car wreck;
  2. The nervous system sends the “IM” as it were to command central: “Injury: Possible Pain Ahead”
  3. The brain then acts like a relay station of sorts. It sends out the message, much like a PA system, to what’s been called “the pain matrix” — an association of brain areas responsible for different functions that, collectively, help us process and learn from the experience (more on this below)
  4. Those areas jump into action, sending the signal to the rest of the body to either stop interacting with the painful stimulus (“take your hand off the stove, idiot!”) or prepare for biophysical stress (“this is gonna hurt”)
  5. The brain’s various structures then learn from the experience thanks to a characteristic known as neuroplasticity.

To get to the heart of how meditation works, we need to focus on steps 3 and 4 — the sending of the signal to the pain matrix, and the various commands that then issue from the brain to the rest of the body in response.

The Functions of the Pain Matrix

In step 3, the PA message goes out to the pain matrix, which consists of those areas of the brain with the following functions:

  • Turning the signal into a physical pain sensation — so you become aware of all this stuff (that’s happening at lightning speeds, of course — much too fast to discern separately)
  • Keeping track of goals and conflict — so you can start to solve the problem of how to make this unpleasant experience better
  • Processing emotions, thereby triggering fear and anger — so you become motivated to protect yourself

That last one, in particular, is important. It’s easy to look at this process and say “well, the emotional stuff, it should just go away. Who needs to feel such negative emotions all the time?” But in fact that’s a crucial part of the healthy pain response! Without it, you’d likely just keep doing the same thing over and over, because it wouldn’t have become something you desire to avoid.

Now, that’s a healthy response. But in chronic pain, the response gets all screwed up. Those hormones that flood our body in step 4, preparing us to “fight or flee”, don’t dissipate like they should. The emotional response continues longer than it would otherwise. In short, we get stuck in this cycle. Like the Energizer bunny — it all just keeps going and going and going …

What meditation does is akin to short-circuiting that cycle.  It breaks the emotional response (which only serves to amp up our suffering). It calms the biochemical stress response. It allows us to experience the pain without suffering through it.

My personal experience with this phenomenon tells me that the benefits are not only immediate but also cumulative. That is, you get an initial improvement in your well-being, sure — but over time, those benefits add up.

Now, when I go into a flare now (and of course, it still happens) my meditation practice has now retrained my brain to approach the experience with equanimity:

  • I don’t get upset.
  • I don’t feel nauseated afterwards (which is due to the overflow of adrenaline that’s produced in the pain response).
  • I don’t feel that rage and debilitating fear that grips so many of us — and used to grip me tight, to be sure.

Want to Know More?

In a few days, I’ll share some solid tips and tools on how to implement a meditation practice, even if you’ve never meditated before.

If you want the full New Agey “whoo-whoo” experience, I’ll give you some suggestions to bliss out with the incense for the whole experience. If you’d rather keep it simple, I can help you there, too. No matter what your preferences, there is a meditation practice that’s right for you, and it will help you feel better. I promise.

Do you meditate? How has your experience with your chronic pain changed as a result of the meditation practice? Share your stories with us in the comments!

Photo Credit: kattebelletje via photopin cc

Six Secrets of the Empowered Chronic Pain Patient

Image of an empty blue wheelchair in a room

Empowered patients.

Seems everyone’s talking about this phrase lately. Heck, even CNN has a whole section devoted to the concept.

But what does it mean? And who are those empowered patients? Most importantly, what secrets do they know that you don’t? How can you use those secrets to improve your own pain management plan and quality of life?

What Does “Empowered Patient” Mean?

It might be easier to start with defining the opposite of “empowered patient” — what I’ll call the disenfranchised patient.

This is someone whose state of health and well-being have been completely handed over to the responsibility of others. She’s thoroughly dependent on what the doctor says. She doesn’t ask questions. She doesn’t understand her own condition or what her options are.

Like a kindergartener, she simply follows the instructions of the authority figure who tells her what to do — usually a doctor, sometimes a well-meaning friend or family member, or even a specific website.

Compare that patient to the empowered patient. Here’s someone who treats her medical care as a team task — and she’s the captain of that team. She listens to the advice she’s given but she makes her own decisions about her health care and pain management plan.

Most importantly, she’s a fully invested and active partner in her own well-being.

The Seven Secrets of the Empowered Chronic Pain Patient

What do these empowered patients have to teach the rest of us?

I’ve done a lot of research on the subject, spoken with many patients who fit that description, and come up with a list of six “secrets” that they understand completely — secrets that aren’t common knowledge, but that can turn anyone into a truly empowered patient.

1. Do Your Own Research Into Your Chronic Pain Condition

The empowered chronic pain patient knows that she’s just as capable of understanding her condition and keeping on top of recent developments — maybe even more so — as her medical team. After all, her doctors have lots of patients with many different conditions; the patient has one (or perhaps a few) conditions to keep track of.  She doesn’t abdicate the responsibility for maintaining that information to her doctor.

However, we all know too well that there’s a real problem with much of the health information available on the web — much of it’s patently wrong, some of it’s even dangerous, and it’s really tough for the lay person to figure out which sources are trustworthy. How can you tell the difference between a reliable site and one that’s better ignored?

Start with the .gov and .edu sites. These government and university research sites are generally considered by most health care experts to be the most reliable. For the government sites, they’re also typically written at a level that’s easier to understand for the lay person, because the audience of those sites is generally the patient herself.

Once you have a basic understanding of the parameters of your condition, you can expand your knowledge by searching for other sites dedicated to your condition. An excellent resource is WebMD, which has several condition-specific centers on its site where other patients share tips, resources, and new information. (I’m a member of the Fibromyalgia Exchange, one of those centers, and I can personally attest that it’s a terrific group, providing support as well as information.)

Another tip: set up Google Alerts including your condition’s name to deliver news about your illness straight to your inbox. This is an excellent way to stay up to date with recent developments.

2.  Demand — And Give — Respect to Your Pain Management Team Members

Especially for conditions like ME/CFS and fibromyalgia, which are plagued by a small but vocal minority of medical professionals who doubt the disease’s very existence, it can be difficult for chronic pain patients to foster solid, helpful relationships with the doctors they see regularly.

For many of us raised to accept a doctor’s words unquestioningly, it can be difficult to insist on being treated with respect.

The bottom line, though, is this: if your doctor doubts your illness exists, or thinks it’s “all in your head,” how can he or she treat you properly at all? You’re just wasting his or her time, as well as yours. Find another doctor, one who’s better equipped to treat your condition.

Insisting on respect doesn’t mean treating the physician poorly, however. Just as with all our relationships in this world, the best doctor/patient relationships are fostered on mutual respect.

You can read further tips on developing a better relationship with your treating physicians here.

3.  Prepare for Visits to Your Doctor(s)

We’re all guilty of it at some point or another: mumbling our way through a doctor’s visit, then realizing when you get back in your car that you forgot to ask the doctor about eight important questions and tell her about two new symptoms.

The culprit here is our failure to prepare for each and every visit as if it were a crucial business meeting. You wouldn’t go into a meeting with your boss for your annual review unprepared, would you?

Similarly, you should take the time before each impending visit to plan exactly what you want to get out of that visit.

Specific suggestions:

  • Keep a list of questions. Start this written list as soon as the last visit is over, and add to it periodically. Before your visit, review that list and select the most important issues to discuss.
  • Bring a tape recorder or a friend. It’s all too easy to forget every single word that’s exchanged between you and your doctor when you’re focused on trying to participate in the conversation. Instead of delaying things and interrupting the flow of conversation with written notes, consider taking a tape recorder or a friend into your appointment. Turn on the recorder (ask permission first!) or tell the friend to take notes, then you can focus on communicating with your physician.
  • Bring a summarized version of your pain log. (See secret #5 for more information on this.) Being able to show your physician the ups and downs of your pain, along with any patterns you’ve been able to discern can greatly improve her ability to make the correct adjustments to your pain management plan.
  • Take printouts of research or new treatments you want to ask about. Doctors are only human, and it’s easy for them to get distracted or not pay enough attention (or just not understand) what we’re saying when we ask about new research or developments into our conditions. During your periodic research (see secret #1, above), collect printouts of those points you’d like to ask your doctor more about, especially if it concerns a new treatment protocol. If she doesn’t have time to review it fully during your visit, you can leave the printout with her and get back in touch later.

4.  Kill The Doorknob Moment Dead

There’s one point that comes in almost every doctor’s visit when most doctors say the patient’s goals go way off track. It’s also the moment that’s responsible, to a large degree, for the backlog of patients in the waiting room. It’s so common that doctors even have their own name for it: the doorknob moment.

You’ve experienced this yourself, undoubtedly: the visit’s almost over, the doctor’s given you marching orders, her hand is on the doorknob to open the door and leave, and you say “Oh, by the way, doctor, there’s this thing I wanted to ask you about …”

And almost invariably, that little thing that the patient almost forgot to ask? Is really the most important thing she could ask. It’s what’s been bugging her most. It may even be why she made a special appointment.

Keeping and bringing your list of questions to the visit will go a long way to killing this moment, but the empowered patient takes it a step further. She prioritizes her list and asks those questions right up front. This sets the tone and agenda for the visit, and gets the doctor’s mindframe where it needs to be (“OK, she’s concerned about a, b, and c, and a’s the most important thing for me to focus on right now…”).

Simply put, you’ll get better care by killing the doorknob moment dead.

5.  Keep a Pain Log

Arguably the greatest tool in your arsenal against chronic pain, the pain log is simply any collection of data that you maintain on an ongoing basis about the key aspects of your condition. Empowered patients use the pain log to help their doctors pinpoint potential patters in their pain experience. (Wow, that was a lot of alliteration for one sentence.)

At its most basic, a pain log would simply track pain level and quality over time. For even more control over your treatment options, however, consider including notes on other aspects of your life that can impact your pain: sleep, diet, exercise, mood, stress level, etc.

The pain log can be “digital” or “analog.”  I formerly used a moleskine, but have moved to a text document on my computer, perpetualy docked to my desktop. When I’m ready for a doctor’s visit, I simply pull it up and print out the changes since the last visit.

There’s also a new site called Relief InSite that appears to be a web-based version of the pain log. It also allows your doctor to log in and view your notes, which has a whole host of potential benefits. (NB: If that sounds like something you’d be interested in, please give it a try and then drop me a note here or on Twitter to let me know what you think so I can write about this site in more detail later, OK?)

Whatever format you choose, the two main components of a successful pain log are:

  1. Keeping it consistently over a period of time; and
  2. Being completely, brutally honest in it.

6.  Trust Your Instincts

Finally, the single most important secret that an empowered patient knows is to pay attention to that little nagging voice inside. Accounts of women who insisted something was wrong, only to find out from shocked ER staff later that they were having heart attacks, are all too common, unfortunately.

As long as you haven’t been diagnosed as a hypochondriac, your intuition can be a powerful ally in getting the right diagnosis. Somehow, our bodies know — and tell us, through often-subtle physiological clues  — when something’s seriously wrong.

It’s important not to get carried away, of course — headaches are usually not indicative of brain tumors, but stressing about it too much can wreak serious havoc on your health — but if you really feel something’s wrong, don’t settle for a dismissal. Get second opinions, insist on tests, and above all, try to stay calm.

Finally, if you feel you’re not able to be your own advocate, then find an extroverted friend or family member who’s willing to be your advocate during visits that are likely to be contentious.

Empowerment Is Within Your Control

By learning and putting into practice these six secrets of the empowered chronic pain patient, you can improve both your quality of care, as well as your quality of life.

Above all, remind yourself — out loud, if you need to, and often — that you are priceless, and therefore worthy of the absolute best in medical care.

Put forth the effort to become your own team leader. I guarantee you the results are worthwhile.

Are you an empowered patient? What secrets or tips would you share with other chronic pain patients to get the most out of their health care programs?

What Does Health Care Reform Mean For Fibromyalgia & Other Chronic Pain Patients?

Image of a Stethoscope Against White Background

After much debate (some of it pretty damned vicious), President Obama finally signed into law the new health care reform legislation that will change the medical landscape for millions of Americans. But what does this controversial and fairly confusing legislative package mean for those of us with chronic pain conditions?

I should start with a warning: I used to be a lawyer. That means: (A) I no longer am a lawyer; (B) nothing herein is legal advice; (C) I may or may not have any special advantages when it comes to deciphering Congress-speak in this matter. So, read as much on this from other reputable sources as you can before you start making plans and decisions based on my interpretations of the reform bill, OK?

That caveat out of the way, let’s look at the bill version that was finally passed and sent to the White House for the President’s signature …

Facts and Figures on Health Care Reform

The numbers vary from source to source, but it looks as if about 32 million Americans will now have a better chance of getting insurance under the new law. Note: that doesn’t read “will have insurance” but “will have a better chance” of becoming insured. That’s a crucial distinction.

The new law mandates coverage for all but a small portion of Americans. Those excluded would be folks who seriously cannot afford it, Native Americans, and those who object to insurance on religious grounds.

2014 is the key year here: that’s when the majority of the provisions become effective. However, until then there are stop-gap provisions that will also impact folks without insurance. Of particular interest to chronic pain patients is the “temporary high-risk pool” provision.

Temporary High-Risk Pool and Pre-existing Conditions

Once the key provisions go into effect in 2014, those with pre-existing conditions (such as fibromyalgia and other chronic pain conditions) can no longer be denied coverage on that basis. Until then, starting 90 days from now, we can tap into the temporary high-risk pool for coverage, with subsidized premiums. Cost-sharing is limited to the figures applicable to the health savings account provisions, or $5,950 per individual and $11,900 per family (2010 figures; these are adjusted periodically).

Health Care Exchanges

The law now provides for state-based non-profit-administered “exchanges” which, if I’m reading this correctly, will allow individuals to buy into plans in groups of 100 or more.

This might be very beneficial for those of us who eke out our livings through self-employment, and for whom historically insurance has been difficult to come by, and prohibitively expensive when available (as compared to the group plans a W-2 worker’s employer can provide).

Overall Cost Restrictions

The bill also puts some caps or limitations on health care expenses. For instance, those with incomes equal to or less than 400% of the federal poverty line will have their out-of-pocket expenses capped at a certain amount.

More Information

For more information, including a look at how the new law will impact the 15 million Americans who are unemployed, see this article in Newsweek online.

Edit: Here’s another good review of the provisions — basically same information as in this post but some additional commentary you might find useful.

Woman in White Meditating Outside

Does Meditation Work to Relieve Chronic Pain?

In this series of posts we’re going to examine meditation in detail — what it is, how it helps, why it works, and how to do it.

Woman in White Meditating Outside

No, It’s Not “All in Your Head” … But Quieting Your Mind Can Help

For a lot of us, any suggestion of remedy that even sniffs of “it’s all in your head” is automatically suspect. For some of us, meditation falls into that category.

Look, I’m as anti-head-caser as anyone (being a fibromite, it comes with the territory) but I’m here to tell you: this meditation stuff works.

Let me make this point clear, though: I’m no guru. I hate the word and think it’s overused both as an honorific and as a criticism.  What I am is someone who’s tried a lot of coping mechanisms and treatment options – someone with a pretty clear understanding of which of those options worked for me and which didn’t.

I’ve also done a fair bit of (OK, extensive) study on the subject, and while there’s absolutely no treatment for chronic pain that will work across the board — even for a particular illness — it seems that more and more evidence is piling up that meditation works. Specifically, it helps someone in pain cope with the pain by removing the suffering component. For me, it also goes beyond that and actually helps reduce the pain.

The Difference Between Pain and Suffering

First, we need to establish what we mean when we say “pain” and “suffering.” Interestingly tidbit: I used to be a lawyer, as most readers know. In preparing a complaint (the document that starts a lawsuit) for personal injury, lawyers will frequently use the phrase “pain and suffering.” Some of us in first-year torts class in law school wondered why use both? We chalked it up to typical lawyer-speak.

Fact is, though, they aren’t the same thing at all. The lawyers were right!

Pain is the unpleasant sensory perception we’re all too familiar with. It’s the biochemical response to certain stimuli — or, in our cases, the mere state of being alive with a chronic pain condition.

Suffering, however, is something very different. While pain is a physical phenomenon, suffering is entirely emotional and mental. It does, in fact, lie completely in your mind.  Suffering, put simply, is the emotional resistance to the pain that we throw up, consciously or subconsciously, and it’s usually based on fear or anger, or both.

Suffering is what makes us think:

  • Why me?!
  • This will NEVER go away.
  • I’ll feel like this until the day I die.
  • What the hell is WRONG with me?!
  • OhGodohGodohGodohGod…

You get the drift.

There’s one more key difference: pain is a fact of life for the chronically pained. Suffering, however, is completely optional.

The Impact of Meditation on Suffering

Meditation works to relieve the suffering component of the chronic pain experience in several ways.

  1. It quiets the mind.
  2. It brings you out of the future-based fear you’re experiencing and grounds you back in the present.
  3. It reduces the physical stress caused by the experience of pain.
  4. It steadies and slows your breathing, which further reduces physical stress.
  5. It fosters a stronger sense of well-being.
  6. It moves you gently out of the “freak-out” mode into a more objective perspective.
  7. It improves your mood.

Why There’s No Contradiction Between Meditation’s Effectiveness and the Biological Reality of Chronic Pain

So, this is the part of the post where I tell you why those jerks who insist that it’s all in your mind are still bone-crushingly wrong and meditation works, anyway, and these two things are not the contradiction that they might appear to be initially.

Let’s say it again, just to make it clear: it is not all in your head.  But meditation can help you reduce the suffering that accompanies your pain. And that can make it all just a little bit easier to bear.

This is true because — again — there’s a difference between pain and suffering. Pain is the biological response; suffering is the entirely emotional/mental response that accompanies the pain.

In future posts, we’ll look at how to start a meditating practice for chronic pain relief.

Fibromyalgia “Cures”: The (Ir)Responsibility of Weird Science

The Problem: Wild and Unsupportable Claims About Cures for the Incurable Diseases That Cause Us Pain

Following on my recent post here about a Twitter debate I enjoyed with Deb Drake concerning the various approaches to fibromyalgia treatment, I wanted to write about another aspect of Twitter that’s not so much fun: people making wild, unsupported, unsupportable claims about fibromyalgia (and other diseases) through their tweets.

A few examples:

Oh, heck. Just take a look at a real-time search on Twitter for “fibromyalgia cure.”

Why I’m Skeptical of These Claims/Claimants — And You Should Be, Too

Knowing who and what information to trust on the web, whether that’s on Twitter or any other site, is difficult sometimes, I realize.

Frankly, I could adopt the whole “only trust .edu and .gov sites!” line that a lot of internet nannies advocate, but I think that’s kind of dumb. For one thing, the most passionate people involved in illness advocacy, treatment and help are the patients — not the government scientists and university professors with access to those prized domains.

For another, it’s just naive to expect people to rely completely on universities and the government for health information. Both entities are constrained by internal and external rules and fears of liability that can restrict the information they’re allowed to disseminate. Not so with individuals or private groups.

On the other hand, though …

You’ll see a lot of usernames with words like “money,” “affiliate,” and “tweet” in them, and a lot of shortened links leading to posts that claim cures for fibromyalgia are readily available — usually conspiratorially squelched by the Evil Government or Big Pharma, two handy scapegoats which “don’t want” you to have this “valuable” information for their own malevolent or merely greedy reasons.

You’ll also see a lot of folks like Roger up there, who seem sincere (but who also have a vested financial interest in getting you to act on their “advice”). And that advice generally consists of wild claims about diet and supplements, about the evils of “chemicals.”

Does a vested financial interest alone — the mere fact that someone’s using Twitter to make money – render the advice untrustworthy? No, of course not. Anyone who claims otherwise is simply too naive to have a rational conversation with. Rather, it’s just one factor in a group of issues to be considered when you’re deciding whether to trust a piece of information — whether that’s from Twitter or any other part of the web, really.

But here’s my thing: if a website I’m directed to is solely about health, generally — not a particular disease or condition or demographic — and if that website is strictly for affiliate marketing, and if the profile of that blogger tends to suggest his or her purpose is in making money, not helping people with chronic illnesses — then, yeah. I’m thinking this person is someone who signed up for Clickbank or LinkShare, who doesn’t actually have the condition at issue but rather simply wants to make money.

Anything wrong with that? Not at all. Heck, I signed up, too. I can’t work the way I’d prefer to, so this is the way I make money and support myself, in addition to the writing and consulting I do.

Am I going to trust that this person “has a cure” for what ails me – or, for that matter, for what ails anyone else? Not a chance in hell. And if you ever see me making claims like that, then you shouldn’t trust ME, either.

Chemicals Aren’t Evil, Per Se

I always find this “chemicals are to blame!” argument a little unintentionally hilarious. Almost always, it’s made in a slightly hysterical tone. Really, what do these folks think the human body is made of?

I think they mean “bad chemicals” — which of course raises the inevitable questions:

  • How bad?
  • In what way bad?
  • Bad by whose definition?
  • And, most importantly, where’s your proof?

The Detox Myth

So, of course, They urge us to “detox.” Short for “detoxify” — as if all these “bad chemicals” have so laden our bodies, lining the walls of our very cells, and causing all our problems, and all we have to do is give the body a thorough scrubbing  in order to rid ourselves of the toxins.

Heck, no less an “authority” than Gwyneth Paltrow exhorts us to “get Clean” by “detoxing” from the assorted chemicals foisted off on an unsuspecting, naive, ignorant public by … well, by somebody (corporations, I’m guessing? Republicans? I don’t know).

The problem with this, of course, is that it’s  (mostly) complete bullshit. There is no evidence whatsoever that any kind of “detox” program, regimen, diet, or process will lead to better health. And there is quite a bit of evidence that some of these programs actually cause harm.

Are there legitimate occasions for detox? Sure. Heavy metal poisoning calls for chelation. But unless you’ve been exposed directly to mercury …

I mean, c’mon, people. Let’s use a little common sense and deductive reasoning here, OK?

Why Claims Like These Hurt Us All

At the heart of my admittedly deeply emotional (and that emotion would be anger) reaction to these quacks and their unsupported claims lies the false hope and inevitable frustration and self-recrimination they generate. First, we get hopeful – hey, something new we haven’t tried yet! It appeals to our innate love of purity and nature, and we think how wonderful it would be if we could just “get clean.”

When it doesn’t work as suggested (and yes, sometimes promised — which is highly unlawful), we’re left with anger, frustration and guilt. Maybe we didn’t do it right. Maybe we’re just so awful — so compromised, so toxic — that it couldn’t possibly work.

Anger, though? That’s a rational reaction to a failed experiment with one of these so-called cures — as long as that anger is directed at the jerk who sold you a bill of goods in the first place.

The other reason all this “cure”-selling makes me angry is that trivializes the illness. Don’t you think that if fibro could be cured with some over the counter pills and herbs that there would be an army of media outlets  trumpeting the good news? Don’t you think I’d be right there with them?

Whatever complex mechanism or mechanisms are at work behind fibromyalgia, I highly doubt a handful of powders and spices are going to cure it. Until I see some double-blind studies published in peer-reviewed journals, I’ll pass, thanks.

That’s Me … What About You?

Now, that’s my stand on it.

But if you want to try one of these programs (which They just happen to sell for the low, low price of $197 or whatever for a measly month’s supply), be my guest and I won’t mock you. Promise. I know what it’s like to be so desperate for relief that you’ll try anything — even if it doesn’t make a lick of sense.

Just go into it with eyes open, and for the love of all that’s good in this world, don’t go for one of the regimens that promise to get rid of “parasites” unless you get it from your doctor after a valid diagnosis.

“Twebate”*: Alternative Remedies versus Pain Medication for Fibromyalgia

I love Twitter. This post is a good explanation of why.

As many know by now, I spent New Year’s weekend moving from North Myrtle Beach, South Carolina, to Salisbury, North Carolina, with my daughter and her kitten. As I expected, the physical and mental stress of this move triggered a fibromyalgia flare-up, and I thusly tweeted:

My Tweet About Fibro Flare-up

The Tweet That Started the Debate

As they do, my #fibro-tweeps sent me some virtual hugs and support, and this one in particular caught my eye:

@DebDrake's Response

Then @DebDrake kindly shared a link to a list of her recommendations for fibromites from her website.  (Deb’s bio on Twitter reads: “I’m a Naturopath, nutritionist & CNHP. I’ve had fibromyalgia for a decade and I am beating it with nutrition and lifestyle.”)

I don’t know what it was about the situation that prompted me to engage Deb but I did, and below, you’ll find what transpired over the next few days between us. Collectively, these tweets represent an interesting debate about alternative medicine versus pain medication for the treatment of fibromyalgia.

So I asked Deb if she’d mind if I shared the conversation with my readers.  She graciously agreed, although she was concerned that I wouldn’t bash alternative medicine in general or specifically with respect to fibromyalgia. I promised I would (A) give equal time; (B) represent the conversation faithfully; and (C) share my opinion truthfully.

And that’s what I’m about to do.

The Twitter Conversation: @DebDrake and @SherrieSisk on Alternative Treatments vs. Pain Medication for Fibromyalgia

I replied:

@DebDrake Alt therapies didn’t work for me. I’m glad they work for someone but my open-mindedness turned to disbelief after my experience.:)

Deb responded:

@SherrieSisk I’m sorry to hear that. It is true that disease = constitution+environment & the remedy must treat both. No remedy works 4 all

@SherrieSisk Dont give up on nature tho. The body has the ability to heal if you give it the tools. minerals help the most -mostly magnesium

@SherrieSisk Many do just the opposite: give up on meds bc of side effects & not working.That was me-In pain 5yrs going to drs. never helped

I replied:

@debdrake Magnesium did absolutely nothing for me. Tramadol, however, works great. Side FX minimal if taken properly, uptitrated slowly

@debdrake Not anti-anything that works for the individual. Just sick and tired of #fibro patients talked out of trying medication b/c of…

@debdrake … baseless fears or bad doctor advice.

Deb next offered the following thoughts:

@SherrieSisk Magnesium by itself helped but not enough. It does pretty good when mixed w CoQ10 and malic acid.

@SherrieSisk But still, fighting fibromyalgia requires a combination of things to do. It was caused by any one thing. A change in lifestyle.

@SherrieSisk Natural remedies dont work the same way medications do. They help build the body up rather than undo a symptom. Symptoms=alarm.

@SherrieSisk So sometimes meds are good. They turn off the alarm & stop pain. but now something must change or damage is still being done.

@SherrieSisk I guess I just think that everything, even herbs, should only be temporary fixes. Herbs for example help the body rebuild.

@SherrieSisk There are a few things we need ongoing since food is deplete. A good multi, omega3, antioxidants, minerals, probiotics, enzymes

My response:

@debdrake It’d be great if that worked for everyone. You can read more abt my 10yr exprnc w/ #fibro at my site – but briefly …

@debdrake … I’ve tried many nutrtl supps – some made slight difference, most made none (incl CoQ10, malic acid and Mg). I just can’t …

@debdrake … agree that meds are not best treatment option, ever, for anyone. There is no one-size-fits all solution, until there’s a cure

@debdrake Basically: I’m a big believer in better living thru chemistry, until they come up with a cure, and strongly believe#fibro ptnts..

@debdrake … shouldn’t feel guilty for trying/relying on them, if they work. Yet that’s the msg we’re constantly bombarded with.

Deb’s response:

@SherrieSisk I hope I dont come across as anti meds. I dont talk about meds. Im not an MD. I’m an ND so only talk about natural alternatives

@SherrieSisk Im def not trying 2 make any1 feel guilty about anything. U have to feel good about what u are doing 4 it to help & not harm u.

@SherrieSisk Fibromyalgia is very much tied in to our emotions and feelings. Choosing a treatment should not be based on fear.

@SherrieSisk I know that many don’t want to use chemicals and so are looking for how to reduce symptoms without meds. I am here for them.

@SherrieSisk Ur right about just trying to use one answer for fibro. It wont work. Like I mentioned bf, must be an individualized program.

@SherrieSisk If a person comes to me and says they live a hi stress life, eat fast food everyday, wont sleep at night, etc, & then say that…

@SherrieSisk They want rid of symptoms but don’t want to make any changes. just a supplement 2 fix it. It’s not possible. I can’t help them.

@SherrieSisk If you are happy with your treatment plan and have no side effects or fear of long term issues, then don’t change it.

Then she said something nice about my writing. 😉  I thanked her, and said:

@debdrake I understand completely. I’m not “PRO”-meds – except when they work and are taken properly. I’m PRO-anything that helps.

@debdrake It’s just that for me, I don’t see the proof that alt remedies really work as well as meds, & there’s a TON of bias against meds

@debdrake … that ticks me off, frankly. No #fibro ptnt should B scared away from ANYTHING that works. Alt remedies, meds, yoga, ANYTHING.

My Position on Alternative Remedies and Prescription Pain Medication for Fibromyalgia

Let’s clarify what we’re talking about when we talk about “alternative remedies” for fibromyalgia.

As I use the phrase, I’m referring to nutritional supplements, acupuncture, acupressure, Chinese medicine, massage therapy, Ayurveda … pretty much the world of treatment outside prescription pain medication, surgery, and exercise/physical therapy-based treatments.

I realize some might disagree with me that yoga isn’t really an alternative therapy, but I consider any movement-based program to be in the same ballpark as any kind of exercise, including walking.

I wrote about nutritional supplements, and described my experience with them, on this blog previously. I realize now that I sort of shied away from my true feelings about natural or alternative remedies in that post, and I apologize for that. But there was a reason for my reserved approach, and it’s echoed in my statements to Deb above: I don’t want anyone with fibromyalgia to be persuaded not to try something that might help them.

See, I agree with Deb in a few respects here. Until we have a cure, there will never be one single treatment that works for everyone and every symptom.

One place where I part company with her is in the why: Deb thinks no one thing causes fibromyalgia and that’s why no one treatment will work. I think it’s entirely possible that one thing does cause fibro, although it possibly depends on a more complex mechanism or series of events to really get going.

The point: We don’t know what causes fibro. We don’t know what the cure is yet.

And with respect to alternative remedies, by and large, we don’t know whether they “work” to either cure, lessen, remedy, heal, or alleviate fibro. We have some evidence, mostly anecdotal, that certain treatments have a beneficial effect more often than others. We have very little empirical evidence, though, especially with respect to nutritional supplements.

Here’s my beef with the whole alternative field: I’ve read a lot of those books detailing the supplementation regimens recommended for fibro, and the regiments simply aren’t practical. I’ve tried a lot of those regimens — the expense coupled with the not-insignificant hassle of taking handfuls of pills every day at different times means, for me, that in order to be worth that hassle, that regimen better produce some impressive results pretty darn quickly.

They never have. For me. Others say that their mileage varied — they believe the regimens worked and they feel a lot better. And that’s great for them.

Let me make this clear, once more: I support wholeheartedly any fibromite’s treatment regimen if it works for you and is safe. Heck: even if it isn’t safe, if you’re fully informed and make a deliberate decision to try it anyway, knowing the risks, then I support that, too, as long as it poses no risk to anyone else.

Where I get irritated is when folks make claims that fibro can be cured by natural means — or frankly, by any means. It can’t. Not yet. I also get irritated when medication is presented as something unnatural — in the sense that it’s bad, or wrong. It sends the message that anyone who chooses medication is somehow weak, or doing the wrong thing, or harming herself.

It’s just not true. I resent it, it gets my hackles up, and it’s dangerous, to boot.

Medication wasn’t something I chose lightly. I looked for more conservative measures for four entire years before I finally agreed to give prescription pain medication a try.

But when I did — when I found what worked for me (tramadol plus acetaminophen) — the change in my quality of life was striking, immediate, and long-lasting. I’ve been on this cocktail for six years now, and have increased my dose only once (three years ago).

Far from being addicted to it, I’m indebted to it, but I take it in order to live my life, not to get high or to avoid withdrawal. I take it, in short, in order to function. It works for me, plus any side effects are minimal and can be managed completely by simply following the instructions for taking it.

Basically, what I’m saying is this: don’t be swayed away from any possible treatment — including nutritional supplements, and – yes – including prescription pain medication — by questionable value judgments placed on the treatment by others. Don’t reject prescription pain meds, when nothing else works, just because people tell you that they’re somehow wrong or objectionable, based on some faulty science or a personal agenda. By the same token, don’t go running to your doctor for tramadol just because I’m saying it worked for me.

And with respect to alternative remedies, I’d love to see some harder science on their efficacy. To my knowledge, only acupuncture has any studies supporting its usage in fibro treatment; it would be awesome to have more options for all of us. All I can do is tell you what worked — and what didn’t — for me:

  • Tramadol, gentle yoga, minor diet adjustments: yes.
  • Supplements, acupuncture, chiropractic, herbs, and just about everything else, including massage (damn it, ’cause I do love massages!): not really, or not in the least.

And, as always, your mileage may definitely vary.




* – (Twebate=Twitter debate. And I promise, that’s the last time I’ll ever coin a “tw”-starting word to describe something on Twitter.)

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

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!

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

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

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

Declutter Everything

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

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

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

Take Note(s)

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

Learn to Love the Sound of Your Voice

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

Get Things Done

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

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

Diet, Supplements, and Aromatherapy

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

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

Meditate, Every Day

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

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

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

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

Nootics: The Wave of the Future?

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

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

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

Bottom Line: Stay Positive and Stay Involved

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

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