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I’ve read lots of reports on how bicycling is a highly recommended exercise for people with fibromyalgia. I’ve been looking for more resources, but have yet to find a comprehensive book on bicycling and fibromyalgia. (Let me know if you find one!)

However, I did find two blogs of interest. One is of a woman, Paula Werme, who attempted a ride across the United States. (She knew when her limits were – AND she made 3,360 miles. Impressive progress). Her site is rather “old school,” so you have to scroll down to read newer entries.

Some interesting points:

All of the above said, the biking is getting better. We’re averaging more miles per day, although the totals are creeping up slowly. We didn’t have ANY 45 day miles at the beginning, and now I can do one that includes a major climb. We’ve done 60, but it was tough. Coming into Missoula was the first day we’ve had on the trip with the prevailing winds, the terrain, and the weather all in our favor, and we sailed into town with an average speed well above our other days – over 11 mph. Compared to our first few days where the averages were 5 – 6 mph getting used to the hills, that’s pretty good.

Dateline, August 11. Still in Missoula, after a car trip 600+ round trip miles to Yellowstone. We head out tomorrow for Great Falls, where Ric and Hannah leave and I continue on by myself.

It doesn’t take a whole lot of miles in a car to remember that you have Fibromyalgia! I was a bit creaky on the trip, and still am somewhat, but I was pleasantly surprised to find that walking around Yellowstone was much easier now that I’ve got some leg muscles – so it does pay to exercise….

I get the idea that if I can get comfortable on a seat, I can easily pick up 10 miles a day just from that! The wheat free/dairy free diet is simply not working – can’t consistently get supplies, and my appetite has been for a fair amount of food – also I’m sick to death of hash browns.

Paula Werme’s story has some very interesting insights into bike seats, in fact. I have a feeling that’s something I’m really going to have to look into.

Another interesting blog is by a woman with fibromyalgia who does triathalons. I haven’t read all of her entries, but you can check them out for yourself on the Living *WELL* with Fibromyalgia blog (aka “tri beyond limits”).

Has anyone else explored bicycling with fibromyalgia? I’d love to hear about your experiences, or any resources you may have found.

The Diane Rehm show had an interesting segment on the power of meditation yesterday (June 22). There isn’t a transcript available at the moment, but you can listen to the podcast on her website.

I should mention first that Jonathan Foust – one of the guests on the show – is a meditation instructor of mine. So I’m rather partial to him anyway. I also emailed a question during the show about chronic pain, mainly asking what medical research there is about meditation’s effect on chronic pain. This was kind of a softball question, but I mainly wanted to see what they had to say about chronic pain.

I was familiar with the guests’ responses. Josephine Briggs (director of the National Institutes of Health’s National Center for Complementary and Alternative Medicine) didn’t cite any particular studies, but said that there are a number which have shown that meditation helps with chronic pain. Jonathan mentioned that meditation can help people change their relationships with pain. This is something I’ve written about before, so I won’t go into it in too much detail here.

Overall, the show seems like a good introduction to meditation and medical research related to it. One thing I did find very interesting were some comments from people who had tried meditation and had trouble with it. In particular, one caller said that he has serious concentration issues. How can he then sit down and meditate?

The general consensus of both guests to the show and those who called in are that there are a lot of different kinds of meditation. Some suggested that this gentleman try walking meditation, yoga (kundalini yoga in particular), martial arts, or some other meditation that moves his body. The trick is to find something that works for you.

I’ll be following up with a poll about your own meditation techniques.

I thought I’d share a strip from one of my (newest) favorite webcomics, Calamities of Nature. It’s a sharp, witty, comic filled with musings on science, religion, and bacon.

I could write about the implications of this particular strip, but I think it speaks for itself. If you want a little more background, you can check out the origins of many musical genres. (Note: If you’re having trouble reading the comic below, clicking on the image will take you to a larger version on the original site.)

Calamities of Nature

Just Another Day on the Bus

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.

This was just too humorous for me not to post. I came across a great scientific study while reading one of Flourish with Fibro‘s blog entries.

According to a study published in the journal Neuroreport:

Swearing increased pain tolerance, increased heart rate and decreased perceived pain compared with not swearing…. The observed pain-lessening (hypoalgesic) effect may occur because swearing induces a fight-or-flight response and nullifies the link between fear of pain and pain perception.

What I want to know is whether that means swearing counts as aerobic exercise, too. (After all, you’re raising your heart rate, right?) I need something new to do in my current, unable-to-walk-properly state.

Ajahn Chah

For the visually impaired: the above image shows a series of four pictures of Ajahn Chah, a Thai monk.He is sitting on the floor, probably preparing for a talk. He is wearing orange robes and has a shaved head. In the first three pictures, he appears to be stretching his hands. He does not appear to be looking anywhere in particular. He has a contemplative look. In the last picture, he smiles to someone behind the camera.

Every time I look at these pictures, I smile. The monk in the photos, Ajahn Chah, just seems to be radiating loving kindness, or metta.

This post is mainly about giving you a picture to smile about. It’s amazing how some people, animals, events, moons, scenery, can just make you smile. For me, it feels like my heart just opens up. Like I’m suddenly somehow connected to the world in a new way.

It’s a great feeling.

In case you want some extra bonus cool information, Ajahn Chah was a monk in the Thai Forest Tradition of Buddhism. There’s a website about the Thai Forest tradition, including some free teaching materials, here.

I’m not sure I’d have wanted Ajahn Chah as my teacher. He certainly did the whole “confront-your-suffering-head-on” approach when teaching monks. I do that intermittently, mainly when I’m having a pain flare up. I haven’t chosen to follow some of his more stringent teachings on Buddhist practice.

There’s a really interesting story (followed by stringent teachings on Buddhist practice) written by Ajahn Chah on the Forest Sangha website. It’s about some time he spent meditating in a graveyard, alone, at night. He describes feeling as though there is a being sniffing around him at night, which he fears is the spirit of the dead corpse that had been cremated that night.

I sat as if I wasn’t even touching the ground and simply noted what was going on. The fear was so great that it filled me, like a jar completely filled with water. If you pour water until the jar is completely full, and then pour some more, the jar will overflow. Likewise, the fear built up so much within me that it reached its peak and began to overflow.

”What am I so afraid of anyway?” a voice inside me asked.

”I’m afraid of death,” another voice answered.

It’s a really good read, I don’t want to spoil it any further. If you like ghost stories, insight, Buddhism, or experience a fear of death yourself, you should check it out.

So lots of people talk about having “blog carnivals,” where you link to great writing from other peoples’ blogs. I thought I’d give it a shot! Who knows, maybe this will turn into a monthly thing. Or maybe not.

(Just FYI: not all of these blog posts are from this month. But I found them this February!)

The Comment from Hell: On Health and Ideologies of Health is a great article/commentary on the way perceptions of health and disability have become issues of “personal responsibility.” The author makes some good points about the institutional aspects of health care issues.

Cripchick posted about the balancing act between living/working as a fast-paced disability activist versus listening to what her body is able to do. You should really check out her entire blog, really – she has some great stuff about disability activism, community, multiple identities, and oppression/liberation.

Abnormal Diversity has some great insights about what constitutes disability prejudice. “The root of disability discrimination is treating disability like it’s a big deal.”

I guess a common theme with these articles is a focus on what dis/ability means: activism, diversity, prejudice, and the de-institutionalization of disability discrimination.

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.

As I write this, the weather forecast in my area is predicting an unusual 20-30″ of snowfall in my region. Once the snow stops, we’ll be engaged in the enviable task of digging ourselves out.

I’m fortunate enough to live with a group of people who can take care of the shoveling. However, many people with physical challenges (such as acute illness, disability, or age) don’t have household members who are able to take care of the shoveling.

If you’re able, help your physically challenged neighbors out when it snows. (I would generally recommend asking if someone wants help, rather than assuming someone is unable to shovel themselves.) Who knows, maybe they’ll bake you delicious cookies in return.

Another important thing to remember: it’s really easy to injure yourself shoveling lots of heavy snow. Shovel “smart” rather than shoveling fast.

The University of Wisconsin has a very informative safe shoveling guide. Some excerpts:

Remember all that stuff about keeping your knees bent and your back straight when lifting boxes?  Well, it turns out it’s equally true of lifting snow. Especially heavy, wet snow….Also be careful of twisting your body sideways as you lift a full shovel-it’s easy to throw your back out when you meant to simply throw snow….

“Lifting a large amount of heavy snow can dramatically elevate your blood pressure in just a few heart beats. It is often safer to use a smaller shovel and make each lift lighter. You should be able to keep breathing comfortably while you work,” says Jonathon Keevil, MD, of UW Health’s preventive cardiology program.

Stay safe, stay warm, and enjoy the winter wonderland while it lasts!

This post is the second in a three-part series on exercising with physical limitations

Website, website, I’ve got your website right here! There’s a great website about exercise and physical limitations, and it confirms a lot of what I said the other day.

It appears that muscle deconditioning occurs when people with FM neglect exercise in order to avoid pain. Deconditioned muscles use excess energy to accomplish tasks. This may contribute to more fatigue and make the muscles more susceptible to microtrauma, thus aggravating pain with only a low intensity of exertion. This cyclical process leads to atrophy (wasting) and greater effort performing various activities. Exercise can help to counteract this deconditioned state by improving oxygen delivery, increasing cellular metabolism, reducing muscle tightness, and eventually relieving pain to some degree. An important benefit during aerobic exercise is that muscle temperatures rise and this may possibly lead to greater relaxation.

This excerpt is from the National Center on Physical Activity and Disability (NCPAD) website, which includes an entire section on Fibromyalgia. There’s information on types of exercise, how/when to incorporate aerobic exercise/strength training/stretching, and references to books and journal articles.

The website also has sections on a number of other disabilities, ranging from “Acquired Brain Injury” to “Yoga for Individuals with Disabilities.” A full list of conditions and their related sections can be found here.

NCPAD is funded by a grant from the Centers for Disease Control and Prevention, and run by the University of Illinois.

Disclaimer: As with all things, consult with your medical provider or trained professional before starting a new exercise program.

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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