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There’s an intriguing video over on the NOVA scienceNOW website – a show on the U.S. Public Broadcasting Station. (Basically, it aims to provide interesting scientific information in roughly 10 minute segments.)

The episode in question has to do with sleep and memory. It covers such things as fruit fly sleep (and areas of their brains that are active when sleeping), rats who dream of mazes, and human memory. I won’t include too many spoilers, but suffice it to say that there seems to be a strong possibility that sleep is related to memory in humans. It also seems to affect learning. Think about studying for an exam before bed, and that information being reinforced overnight. Or what about those times people decide to “sleep on a problem.”

I can’t help wondering what exactly that means for people with fibromyalgia. If we don’t sleep well, does that affect our memories? Perhaps this connection between sleep and memory accounts for fibro fog. All this is, of course, my own personal speculation. It seems that other people have already thought of it. According to Arthritis Today,

One of the most popular theories about fibro fog has been that these problems are caused by sleep deprivation and/or depression, but one study [note: one] found that neither poor sleep nor depression seemed related to cognitive performance.  Brain scan studies have shown that from time to time, people with fibromyalgia do not receive enough oxygen in different parts of their brain. One possible reason is that part of their nervous system is off-kilter, causing changes in the brain’s blood vessels.

New research – though not on fibromyalgia specifically – shows that chronic pain itself may affect the brain. A technology called functional MRI found that in people with chronic pain, a front region of the brain mostly associated with emotion is constantly active. The affected areas fail to “shut off” when they should, wearing out neurons and disturbing the balance of the brain as a whole.

Again my own speculation – sleep, pain, and the brain are such complex issues that perhaps there are multiple causes at play. I guess I’ll be researching chronic pain and the brain next.

Regardless of my own pet theories, I like keeping up to date on sleep research. I hope you enjoy the video as well – it’s about 12 minutes, and quite entertaining.

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I feel like their is a war waging on the battlefront of my body. I’m not talking about the pain or fatigue I feel from fibromyalgia. I’m not talking about migraines, or mood disorders, or any of that.

I’m talking about the way medical providers (“Western”, alternative, and complementary), the media, drug companies, and even sometimes people from my everyday life try to co-opt decisions about what the best treatments are for my body. Often, they don’t agree with one another. Then I’m left stranded, trying to figure out what the best course of action is. It is not therapeutic, and it doesn’t help.

Some (not all) “Western”/modern medical providers are all about science by the books. I think fibromyalgia threatens them, because the diagnostic tools basically involve ruling out other things and then poking the patient in 18 places. If 11 out of the 18 hurt (divided in certain sectors of the body), then it’s fibromyalgia. Even though fibromyalgia has been documented as a real condition in countless places – and new clinical data shows that fMRI’s can pick up signs of fibromyalgia in the brain – many doctors are only now accepting that fibromyalgia is a real condition in the way that arthritis or diabetes is.

“This is the crux of it, the reason more than a handful of physicians have such disdain for FM and its sufferers: they don’t know how to see it, how to measure it or how to effectively treat it.  In short, FM is a mystery many physicians would rather not contemplate…. ‘As treatments have been developed that work fibromyalgia is being more widely accepted as a legitimate, scientifically credible disease.’ In other words, FM might become increasingly viewed as legitimate because physicians are becoming better able to do something definitive to attenuate the suffering.”

These are the words of medical doctors (MDs) who practice/research at Johns Hopkins and the University of Michigan. Wait, wait – the people who diagnosed me with this syndrome might not believe that it’s real? When I was first diagnosed, my rheumatologist basically gave me the following prognosis: you may never be able to work full time. We don’t really have any medications for this. Physical therapy might help. Have a nice day, see you in six months. (Note: I do not see that doctor anymore, and have found much better ones.) I did end up going on some medications that seem to help, which I’ve added to my cocktail of mood disorder medications.

Physical therapy most definitely helps, as do other more “alternative” or “complementary” medical practices. Reiki, light touch massage, integrative manual therapy, meditation, healing drumming…all of these things have helped enrich and improve my quality of life. They also help alleviate mental and physical suffering.

The problem is that there are skeptics in both sides. Western practitioners often don’t “believe” in reiki, because of lack of clinical trials. The same goes for a lot of other alternative/complementary techniques. And a lot of people I know from the alternative community have their own prejudices against Western medicine. There are too many side effects, it’s too intrusive, the drugs often do more harm than good. I am not saying that alternative medical practitioners urge me to go against the advice of my doctor. But when I tell people the medications I’m on – it’s quite a cocktail – there is sometimes a general pursing of the lips. A certain look in the eye that says, “I wouldn’t take all those chemicals.”

Ah yes, the Great Medication Debate. Western doctors often don’t like to prescribe pain medications, as they can be addictive. Emergency room doctors sometimes treat fibromyalgia patients as though they’re drug addicts. As already mentioned, alternative medical practitioners have their own skepticisms about the effectiveness of prescription medications. Meanwhile, I run across the occasional friend who says something glib like, “I really don’t like taking medications.” Guess what. I don’t like taking them either. I take them because they help, even though there are sometimes really terrible side effects.

So what’s a girl to do? I’ve received positive help from medical practitioners from all practices. I’ve also received some care that just hasn’t helped. My social support network is, for the most part, very supportive.

You know what would be really helpful? If I didn’t have to defend one set of medical practitioners or traditions to practitioners of another tradition. If they worked together, and I received holistic advice that integrated healing modalities from a range of traditions.

This is my body. MY body. If you are going to be my medical provider, treat it with respect. Please leave your personal baggage at the door.

(Note: I’m not targeting this at a specific person. So if you’re someone I know, and you’re wondering if this is about you, it’s not. ^_^)

I think I’ve got a pretty good handle on coping with fibromyalgia-induced pain. My bipolar meds are fine-tuned enough that it’s usually under control, and I know all the warning signs and have my list of coping mechanisms ready. I do what I can to prevent migraines (wearing sunglasses, avoiding too much dark chocolate, avoiding other triggers), and have medications that usually work.

I like to think that I kind of have things “under control,” or at least well managed.

Recently I got hit with a new kind of pain. I’ve had occasional foot pain this fall, which got better when I switched shoes and insoles. On Thursday, though, I found that the occasional pang in my right foot was interfering with my ability to walk…causing me to limp…causing me to throw my body out of alignment…causing everything to hurt (an 8/10 on the “pain scale”)…causing my mood to just come crashing down. I worried about when it would end, how I would cope, and just wanted to scream. I tried doing mindfulness meditation. It helped a little bit with my mood, but I really became aware of just how much I hurt. My pain started feeling like a Jackson Pollock painting. (You know, the ones with all the paint drips everywhere?) It was a discordant symphony of pain – stabbing, burning, crawling, icy, hot, and on and on. I have a lot of experience with pain, but I had never felt anything quite like this.

There is something about unfamiliar pain that is much scarier than pain you know. There is all this emotion tied up with the pain. “When will it end? Is this something acute or chronic? How much will treatment cost? How will it affect my daily life? Am I going to be able to exercise? Am I about to go into a bout of a bipolar flare-up too? I don’t think I can take much more of this…” With fibromyalgia, it’s mostly, “Oh, this again. I know how to deal with you. If you get really bad, I’ll call my doctor.”

I woke up with pain yesterday morning, and managed to get an appointment with my physical therapist right away. She helped a lot, put tape on my knees, etc. I was pain-free all day (always a plus). Later in the evening, though, I found myself with stabbing pain in my foot when I was sitting at the computer. I quickly found the pain spreading throughout my body, and consequently spreading through my consciousness.

I ended up in bed, sobbing and having a panic attack. It was not a fun night. I’m worried about the potential cause, how long it will take to treat it, etc. I really enjoying walking as exercise, and I’m afraid my body will suffer from not being able to get out. I have to climb stairs to get to my bedroom and my office. My brain went on and on into worst case scenarios and pain, and everything started to spiral out of control.

I tried Tylenol, with no luck. I tried my usual dose of Tramadol (25 mg). I tried the higher prescribed dose of Tramadol (a total of 50 mg), and that eventually started to dull the pain. It also knocked me out, which meant I didn’t have to think about the pain for about eight hours. Sleep helped, too. This morning, I’m achy and the only real pain is in my foot.

I managed to get an appointment with a podiatrist my friend recommended. The appointment is in 13 days. I’m going to try not to catastrophize about what might happen, and try to be in the moment.

Here’s hoping for inner strength and compassion towards myself.

Early post (Tuesday instead of Wednesday) because I feel like sharing now instead of later.

Today is my birthday. I feel as though I should write something birthday related on my birthday, but really wasn’t sure what. I thought about writing about age-ism, or about reflections on my life thus far.

Really, though, this birthday has made me think a lot about my 21st birthday. It was my first birthday party after being diagnosed with fibromyalgia, and I was (am?) still adjusting to life with the “disability” label. I’d just applied for Supplemental Security Income. It was difficult for me to socialize much, as a lot of my friends were in other states or simply outside the distance I could comfortably drive.

It was so amazing to have a night with friends, to really feel surrounded and supported and loved. We went to a drag show at a local bar. It was exciting to be able to get into a 21-and-older establishment, and to order an obligatory alcoholic beverage. I had fun tipping all the drag queens, and they singled me out for having a birthday.

I know that people usually don’t like the whole have-everyone-at-the-restaurant-sing-a-song thing, but I really enjoyed it that night. Basically, a drag queen pie-d me in the face with a whipped cream pie while my friends laughed and took pictures. That probably sounds horrible and humiliating, but I actually felt…normal. Like a human being, instead of some fragile, trembling creature who was afraid to venture out of the house for fear of pain.

I was a bit worried about having a pain flare from the chairs in the restaurant. They were plastic patio chairs, and not ergonomically designed at all. I sat in them for four hours or so, and didn’t get up to stretch. My doctor would not have been pleased.

Imagine my surprise when I got home and found out that I wasn’t in pain. Anywhere. I usually have some sort of “background noise” of pain that never really goes away, even on my better days. My shoulders ache, or my hands are swollen. Something like that. For my 21st birthday, my body decided to give me some time without pain. It was incredible.

I decided I would use my new energy and pain-free body to do something “productive.” I went to sort and clean and organize, and soon found my body brought back to earth and pain. I learned an important lesson. If your body is feeling good, savor it. Experience that moment. Cleaning can always wait until another day.

Bronnie Thompson has written a wonderful blog post about Balance, control & passion. It echoes a lot of what I’ve been pondering (to myself and friends) lately about the meaning of work and values when one has a chronic medical condition/disability.

“Yesterday a couple of colleagues were talking about balance in life, and making it plain that they think people who spend a lot of time and energy on their work are sad.  Their opinion? Work is the means to pay for your ‘real’ life, to spend more on working means less on what is really important to them…

One way of looking at the distress and disability associated with chronic pain might be to think of it as a result of conflict between what can be done (resources) and both values (what is important) and goals (how I want to express my values). An ongoing problem with life itself is the limited resource we have to do what we want!  The whole of life is really about this balancing act.  And I suspect that one of the major sources of distress for people with chronic pain is that they carry on using the same strategies to express values but with limited resources to achieve it.

I’m not the only one to think of it this way – several authors have talked about the concept of ‘psychological flexibility’ (McCracken & Vowles, 2007).  Psychological flexibility involves several processes such as acceptance, mindfulness, values, and cognitive defusion.  This is a bit of jargon from ACT (Acceptance & Commitment Therapy) and basically means being able to allow oneself to experience all that life brings, while at the same time choosing to act according to what is important and valuable to you – and being prepared to alter the way in which this is achieved, depending on the situation.

So one way of looking at people with disability from their chronic pain is that they are stuck.  Stuck using old and unhelpful ways to achieve what is important to them.” [emphasis mine]

What wonderful insight. In my introduction, I talk a lot about my pre-bipolar-and-fibromyalgia self and preconceptions about what it means to be successful.

A lot of people talk about finding a balance, often finding a balance between mind, body, and spirit. How does having fewer resources to do so affect this balance? What happens when you don’t have as much energy, or you’re dealing with chronic pain? Bronnie discusses some different treatment modalities, such as Cognitive Behavioral Therapy (CBT) and ACT (Acceptance & Commitment Therapy).

“One problem I have with CBT is that when my own resources are low (I’m really tired, maybe I’m a bit depressed) the energy it takes to process and evaluate my automatic thoughts can be really hard to find.  It takes a lot less energy to simply allow the thoughts to be there but not act on them and remain focused on achieving things that are important to me.”

I actually hadn’t heard of ACT before, so that’s something for me to look into. I have to echo thoughts on the energy it takes to use CBT. If you’re already in the midst of some emotional or physical pain/fatigue/distress, it’s very hard to kick-start yourself into using those CBT coping skills. When I’ve dealt with some negative thought patterns due to mental illness, I found that it was very important to use my coping skills as soon as I noticed a problem. If I waited until it was a bigger problem, it snowballed out of control. Physical pain can sometimes come on very suddenly. You don’t always get some head notice that you’re going to have a flare-up. That’s why I prefer mindfulness meditation to CBT when I’m having a fibro flare.

“What we are trying to achieve in pain management is living according to what is important (valued) and being flexible enough to find ways to achieve this despite pain…

What this means is that there are times when I choose to act according to what is important to me, despite my own thoughts (which might be automatic, and wanting affirmation from people that I’m OK and not ’sad’), and despite my own energy levels.  To be able to choose whether I persist with some things and drop others, knowing that I’m living out my important values gives me that freedom that we call ‘being in control of my own life’.”

Well said.

I know this post may seem very strange given the recent bout of winter storms. I’m posting it now because, (1) it’s a reminder that spring is coming, and (2) you can think/organize/plan gardening things now, in time for the season. If you’re a gardener, that is.

I come from a gardening background. My mother is a Master Gardener, and our garden is a lush bonanza of color and foliage during the growing months. I’m not nearly as involved as she is. I enjoy getting outside, and there’s something about getting your hands into the earth that I find healing and grounding.

Since I began dealing with chronic pain, gardening has been more of a challenge. I have to be hyper-aware of whether or not I’m reaching too far, kneeling too long, or overexerting unused muscles. I say “hyper-aware” because these are things all people contend with. I’ve known athletes who overdid it planting a tree.

Fortunately, there are a lot of tools and methods out there to make gardening more accessible for anyone with physical limitations.

The PBS website has a short article on several types of tools that are enabling gardening tools. These include fist trowels, ratchet pruners, multi-purpose benches, and pulley-system hanging baskets. (I’d never heard of the last one before.)

There are some other tools that I’d recommend. In my opinion, anyone using a wheelbarrow should use an ergonomic wheelbarrow. Extra cost is definitely offset by ease of use, maneuverability, and lack of doctors’ visits. There are a bunch out there. I don’t know where ours was purchased, as it was some online place  several years ago. (I’d imagine something like this model from Home Depot would do the trick.)

I also find that finding the right gardening gloves has been a challenge for me. My hands tend to be slightly swollen and sometimes tender. Anything that’s too tight or chafes is definitely out. There’s a garden store near my house where I go and try on all the gloves to find the one that’s most comfortable for me.

I used to scoff at ergonomic this and that, but having the right tools really does make a huge difference. Having the right tools applies to more than just gardening, of course. There are tools to make computers more accessible, to help people walk, to help people shower….There are lots out there. If you know of any more good ones – gardening or otherwise – feel free to post them in a comment!

A friend of mine passed on an interesting article from the New York Times about migraines. (I’m posting it as a “special weekend edition,” as I don’t know how long the article will be freely accessible online. With the newspaper industry the way it is, I think the NY Times charges for older articles.)

“Some early data suggests that if you let headache pain go without treatment it can lower your threshold for pain down the line,” Dr. Saper said. In other words, untreated headaches can make you more vulnerable to pain.

On the other hand, if you are taking over-the-counter or prescription painkillers two to three days a week for months on end, the medications you are taking to dull pain could worsen your condition. You may then start to experience medication-overuse headaches — a risk for migraine sufferers.

I think this is one of the really tricky things about medications. Not only do you have to find the right medication that works for your body, you also have to figure out the right dosage. How much medication is too much? Am I able to lower my dosage safely, or will I have renewed symptoms?

There is also a lot of controversy – particularly in alternative medicine settings – about taking prescription medications at all. I know many people are uncomfortable with taking medications, often particularly with taking painkillers. I can understand this, and yet many people also don’t have a choice about whether or not to take their medications. For example, someone with HIV/AIDS should not go off their anti-retrovirals.

It’s particularly interesting to see this article’s mention of the positive/negative effects of medication on chronic pain. Pain is such a nebulous thing anyway. Different people have different pain thresholds, and chronic pain takes the issue to a whole new level.

How do we treat pain in our society? I think it’s certainly telling that we have medications called “painkillers.” Yet untreated pain, as mentioned in the article, can negatively affect a person’s quality of life. Certainly, having pain all the time – particularly with no effective coping strategies or pain management – is really, really terrible.

Researchers are learning that pain and the medications used to treat pain can potentially change the biology of the brain.

Receiving good treatment can help you function more effectively, and will probably also save you money over the long term. And if you have health insurance, it should cover most of the relevant medical evaluations and treatments.

The question of universal health care aside, I think the key thing this article mentions is “good treatment.” The article continues by talking about effective strategies for talking to your health care provider about migraines/chronic headaches, as well as some supplements migraine sufferers may find helpful if they’re going the “alternative” route.

I’m glad that researchers are studying the effects of medication, unmanaged/untreated pain, and treatment strategies on migraines. I’m interested to see what further studies reveal. I feel like the study and article raise a lot more questions than they answer.

NPR had a wonderful series on the mind-body connection awhile back. If you haven’t already listened to it, there is a great podcast on science and meditation.

The podcast is available for download, and there are some “web extras.”

People who meditate say it induces well-being and emotional balance. In recent years, a group of neuroscientists has begun investigating the practice, dubbed “mindfulness.” As NPR’s Allison Aubrey reports, they are exploring the hypothesis that meditation can actually change the way the brain works.

That seems pretty obvious to me, but I have some first-hand experience with the effects of meditation on my body. It’s interesting to see a clinically-proven take on what many people have known for millenia.

The Wisconsin scientists have demonstrated that meditators do have increased activity in one part of the brain, the left prefrontal cortex, which is associated with emotional well-being. The response is strongest with long-time adept meditators, but the researchers see the same pattern of brain activity in people who are just being taught to meditate.

For more on science and meditation, Health Skills has an interesting blog post on a clinical study about the effect of deep breathing on pain and affect (attitude) among people with fibromyalgia and those without. The findings refer specifically to deep breathing, and not mindfulness meditation, positive visualization, guided meditation, or other meditation techniques.

I read an article, “Is it All in My Head?”, from Psychology Today recently, and I really feel like it has a lot of good content about the role of the mind-body connection in chronic pain syndromes.

“Capping her frustration, Howard cannot be sure to this day why she became ill. But her best guess is that the self-imposed stress of her ambitious lifestyle played a role….Howard’s suspicions are confirmed by many researchers, who are coming to believe that psychological factors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, diagnosis or a cure. It seems that the way you think about your illness can actually affect how sick you get.

These “multi-symptom illnesses”—which include chronic fatigue syndrome, fibromyalgia and potentially others such as Gulf War syndrome, irritable bowel syndrome and the condition known as multiple chemical sensitivity—have provoked intense controversy. Because they have no obvious biological cause, some doctors and researchers dismissed them in the past as hysteria or the “yuppie flu.”

Many patients, in response, became equally determined to prove that their disease was just as real and as biologically legitimate as heart disease or breast cancer….

However, the war between doubters and advocates has waned. The consensus is that these illnesses are truly mind-body diseases, in which biological and psychological causes and dysfunctions are inseparably intertwined. The mind seems to play a key role in kick-starting and perpetuating illness—but it’s not that sufferers are simply malingerers. Their bodies are sick, and their reaction to the illness often makes it worse.” [emphasis mine]

I definitely would have had a hard time hearing this when I was first diagnosed. I was in the “camp” trying so hard to justify my pain to people who didn’t seem to understand. Heck, I even had a “Fibromyalgia is Real” awareness bracelet.

That mindset didn’t help me get better. I just stayed trapped in what Buddhists would call dukkha, or suffering.

Allowing myself to feel pain – but not dwell in pain – is probably the single most important lesson I have learned from my experiences with fibromyalgia, if not my life. Read the rest of this entry »

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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