The patient in the story tells an all-too-common tale of cocktails of painkillers and multiple diagnoses, who experienced a turnaround with pool-based exercising. This meshes exactly with my own experience. I find the deepest flareups need rest at first, but for everyday pain and the milder flareups, if I can get moving in a gentle, easy way (walking, restorative yoga, easy stretches, Pilates) the pain does diminish. This, I think, is due to a couple of responses within the body. First, the endorphin rush of exercise acts as a natural painkiller. Second, the act of moving the muscles and joints produces a lubricating effect which eases movement and lessens both inflammation and resistance, two key factors in pain.

That’s my totally unscientific theory, but it backs up my experience.

How about you? What sorts of exercise can you do? What’s beyond you? Do you find exercise makes the pain better? Or does it just trigger flareups in your case?

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exercise and fibromyalgia

See, usually I’m pretty highly functional for a fibromite (thanks in no small part to tramadol). But the last few days I’ve been feeling increasingly run down and … off, I guess, is the only word to describe it. (Remember our discussion about how hard it is to convey your pain to another person? Yeah, I’m feeling that, too.)

Now, normally, when I’m feeling “off” (and I’m supposed to be the writer - ha!), I can power through. I pop some acetaminophen, do some yoga, meditate more frequently, and break out the heating pad if all else fails. All that takes care of the physical symptoms - well, to some degree - but it’s the emotional wallop that can really bring me down into a state of nonfunctioning muddling-through-ness.

When we’re first diagnosed, we can often experience a state approaching euphoria. We’ve been sick for a long time, usually, without knowing why or what’s got us feeling like road kill under the proverbial wheels of the proverbial Mack truck. Hearing the pronouncement - “you have fibromyalgia” - makes a huge difference in our outlook. Finally, a name! Something to call it, some validation, some support . . . but then the reality begins to sink in. We still have the same symptoms. Naming does not equate to curing.

This is the maintenance stage, and it’s crucial. While seeking diagnosis, it feels more urgent and immediate. But this is the marathon - the long distance run. And while we know that our mental outlook is crucial to our wellbeing, just as much as getting enough sleep and taking our medication as prescribed, it’s easier said than done. The simple truth is that when we experience flare-ups, we are at risk for feeling depressed, sad, angry, and all host of so-called negative emotions.

What do we do with those? We can deny them - which I try to do on occasion (hence the “power through” comment). And while that might work for awhile, it will always come back and bite you in the posterior, demanding to be dealt with. I’ve learned - or, rather, am learning - to try to accept the negative stuff and instead of powering through, just ride the wave. Be in the moment. Go with the flow. All those nice cliches. But actually, “ride the wave” is a good metaphor. Something outside yourself is carrying you along for a ride, and it’s very hard to let go and trust the wave. But every wave will wear itself out eventually, and struggling against it will ultimately just wear you out faster.

Ride the wave into the shore and you’ll eventually find yourself on your own two feet again.

Seems that Jeanne Hambleton, the blogger behind this post and FMS Global News, one of the top fibro blogs around, is working on a book about fibro. And so am I!

Jeanne’s book is going to be called Pain 24/7 - The Fibromyalgia Jigsaw. She’s been working on hers a lot longer than I have, and I am looking forward to reading it in print. She’s looking for sponsors to cover costs of publication, and every little bit helps. So, give if you can! It’s a good cause, and we need more stories like Jeanne’s to be told.

My book is also about fibromyalgia, and specifically my experiences with it. It’s tentatively called The Tramadol Diaries, and I’m looking to do it the old-fashioned way (via a publisher). I’m working on my book proposal right now, and hope to get it on the market by next year. I’m planning to focus on the experience of a chronic pain patient on medication during the ill-advised “war on drugs” and its impact on the medical profession striving to treat us chronic pain patients.

The more books we have out there - especially ones covering personal stories like Jeanne’s and mine - the more likely we are to increase awareness. And - hopefully - the more likely we are to get some answers. Maybe even a cure.

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fibromyalgia books

Already up at the site is a form that is helping Chinika collect stories of triumph and perseverance. I’ll certainly keep you all posted about the website and its debut! In the meantime, I’ll even try to score an interview myself with Chinika - she sounds like an amazing person.

The author discusses the difference between the four levels of sleep, talks about which level is so crucial for restorative wellbeing, and suggests how to retrain the brain to get that crucial deep sleep.

Why It’s So Hard To Talk About Pain

It’s not so easy to answer when you hurt all the time. There’s the often-used and completely inadequate “scale of 1 to 10″ frequently trotted out by doctors and nurses. It’s a start, certainly, and it’s better than having them ignore your pain altogether or treat your pain as inconsequential. But it’s wholly inadequate to convey fully the nature, scope, and quality of your pain, nuanced as it is.

And then there’s this: how many people really want to hear your description, even when they ask? Think about it. Pain is one of those incredibly complex and highly personalized experiences that defy true explanation. And on top of that, human nature is such that when we start talking about our pain to others, we often get in response blank stares, followed quickly by fidgeting, casting about visually for something - anything - to “rescue” the conversation away from talk of pain, and generally demonstrating a high degree of discomfiture.

Responding To People Who Are Uncomfortable Hearing About Your Pain

Why does hearing about someone else’s pain make us so uncomfortable? That’s probably subject enough for a separate post. But for purposes of this one, let’s focus on you, the patient, the person describing the pain. If you’re faced with this kind of reaction, what do you do?

It might seem incumbent upon you to change your approach. Some would speak more quickly, edit out their words, wrap it up quickly, or even minimize the pain itself in an effort to “fix” the other person’s reaction. This is a highly dangerous approach, and it’s the wrong one to take.

A better way to handle it? There are two, depending on the purpose of the conversation. If you’re speaking to a medical professional, and you’re getting a response that indicates disinterest or discomfort, you need to stop talking for a second. Just pause, get the medical professional’s attention, and say with as much of a “smile in your voice” as you can muster, “It seems to me I’m making you uncomfortable but I really need you to hear me all the way through on this. Do you need a second to regroup and let’s try again?” They have ethical duties to treat you, and you have a right to expect proper treatment of ALL your symptoms, including pain. They cannot do that job appropriately without hearing you out fully, so you’re doing them a favor. (And, of course, yourself.)

If it’s a casual or work acquaintance who’s asked “How do you feel?”, well here we have some more room to play. You have to decide for yourself how much to say. You don’t owe them a full explanation, and personally, I never even get into the details of my pain with casual acquaintances. For family and friends - I mean real friends, who honestly care - it’s a judgment call on a case-by-case basis. If I feel I have their attention, and intuitively feel it’s right to tell them, then I’ll describe the full gamut but as generally as possible. For instance, I’ll say “My back is hurting quite a bit in the SI area, but the other trigger points are OK, thankfully. No other major symptoms today. And how are you?” instead of going into the fact that the IBS acted up last night, and that made sleep next to impossible, etc.

The Four Aspects of Pain

Back to the medical pros, though, for a second. It’s really crucial to explain the fullness of your pain to these folks and to do it in such a way as to communicate four major aspects of your pain:

1. The situs - the physical location of your pain
2. The quality - burning, throbbing, stabbing, aching, tenderness, sharp, stinging, dull?
3. The severity - 1 to 10 might not be enough. Use a 1-100 scale to give better detail.
4. The pervasiveness - is it constant? Come and go? If so, give a range (again, 1-100) as to each end of the spectrum you’re experiencing.

Other Important Information

Don’t forget that you need to explain to your doctor and nurse other vital information about your pain. When did it start? Does it get worse or better with any particular method of treatment, position, or activity? Does it radiate anywhere, or is it highly localized? How long have you been dealing with it? What about your pain prompted you to seek treatment?

And then there’s this - consider using your intuition. Depending on how receptive your treatment professionals are, they may be interested in knowing your input on what you think is up with your body. They may not be - but if not, and there’s some aspect of your pain that you feel pretty strongly about, there’s a way to include that in the conversation without triggering any super-scientific-types’ “New Age Meter” (you know, that little alarm system that goes off in a doctor’s head that makes them tune out anything you say that’s the least bit holistic or mind-body?). Just attribute it to the other side of your brain - “I wonder if … ” or “I was thinking that …” Alternatively, enlist the aid of a family member who can speak up and ask, “Doctor, I was reading about _______- do you think that could be at play?” or, if they’re not in the room with you, “My sister read about ______ and wanted me to ask you about it.”

Knowledge: The Most Powerful Weapon

Bottom line: it’s your pain, and it’s a highly personal experience. Communicating it fully and adequately to your medical team is crucial for proper care, and communicating it to loved ones can be crucial for your relationships. It can be hard to think of new words when things really go south for you, so spend some time when you’re feeling better thinking of your pain, and the right words that describe it. That way, when you do experience a flare-up, you’ll be armed with the most powerful weapon of all - knowledge.

A quote:

Specifically, the hippocampus is extremely sensitive to stress, and in fact is the brain organ that enables us to respond to environmental stressors in a way that helps us avoid danger. The best example of the beneficial stress response is when our ancestors crossed paths with a saber tooth tiger - an immediate “fight or flight” response was mandatory to ensure survival. Studies have shown that chronic stress, however, can contribute to a disruption of normal hippocampus function. The hippocampus plays a major role in pain perception and memory formation, and it is involved in controlling the production of that crucial brain neurotransmitter, dopamine. Dopamine abnormalities have been linked to “restless legs syndrome,” increased pain, and feelings of self doubt, anxiety, and problems with memory formation.

Carson goes on to note that Mirapex(tm), the brand name of Praminexole, which is approved for treatment of Parkinson’s disease, met with some success in a double-blind study of how it impacted fibromyalgia. Another drug, ropinrole, which also impacts dopamine and has been approved for restless legs syndrome treatment, also benefitted fibromyalgia patients in a similar study.

So, is it all stress? What they’re really saying here is not that it’s all in your head - I think that should be made clear. It might be in your brain, though; the theory suggests that it’s actually stress-induced physiological changes that serve as the causative factor.

It certainly bears more investigation, and I’m thrilled, as I commented on the that article at ImmuneSupport.com, that progress is being made at all. It’s a far cry from even a decade ago, when we were still arguing over whether it even existed at all!

This Yoga Journal article, http://”Hot Buddha, Cold Buddha”, sheds some light on the question, as well as on the curious human tendency to “forget” our resolve when it comes to exercise (or, in this case, yoga). Speaking of Patanjali’s writings on yoga, the article says of the Indian mystic and scribe’s words:

Abhyasa is usually translated as “practice,” but some have translated it as “determined effort,” or what I am choosing to call “discipline.” Unfortunately, there are few words as off-putting to most of us as “discipline.” It brings back memories of being told to sit on that piano stool for 30 minutes and practice no matter what. Or in our minds we may have connected discipline with punishment. But the kind of disciplined effort Patanjali means by abhyasa is very different from the sense of force and even violence people associate with the word “discipline.

Is discipline, as the article author suggest, something we impose on ourselves? Or can it rather be something we pull from within? And just why, do you think, is it that we don’t keep our promises to ourselves?

As fibro patients, we know we have to keep our bodies moving. We know we have to exercise in order to keep our muscles from atrophying and the pain from getting worse. But for most of us, exercise isn’t so much fun. We’re no different in this respect from the majority of the rest of the population. But we also get an added obstacle - the knowledge that if we push it too hard, too far, too fast, we will very possibly trigger a flareup. That’s enough for many of us to keep us parked on the couch and off the yoga mat (or the track, or out of the gym or the swimming pool).

So what’s the answer? I think it’s in recasting our thinking about exercise, and in fact about change itself - the very nature of changing our lives, our habits, our actions. Most of us think in terms of willpower, when it comes to making a lasting change in our lives. We think to ourselves, “If only I had more willpower. If I could just make myself behave …”

But that way of thinking about the issue contains failure, because it presumes the existence of a separate force or personality, if you will, within us - one that wants to exercise (or whatever the change is) to the exclusion of all other possibilities. If we can just shut down the personality that’s currently in charge and let the other one take over, we’d be set - or so our subconscious processes this “willpower” talk.

Instead, try thinking of a series of decisions - an endless series, to be sure, but nothing more than that. Don’t look at the decision after the next one - just look at this one, the one right in front of you. The others don’t matter- they don’t even exist yet, really. Just this one, the one staring you in the face right now. Look at that decision and ask yourself this question: “What means more to me right now - the long term good of my body, or the immediate satisfaction of sitting down and watching more TV?”

And don’t kid yourself - every single decision counts, including this one. That’s the part we all need to wrap our heads around, I think. We are really good at fooling ourselves into thinking that “just this once” won’t hurt. But as we saw Sunday night on the VMAs, every misstep counts. Make the right decision this time. Then make the next right decision, and so on. That’s all discipline is, really - a series of good decisions.