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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.

I don’t know if this is more of a review or a testimonial. Let me just say that I find Belleruth Naparstek’s healthjourneys guided meditation CDs an amazingly helpful coping tool.

I typically practice mindfulness meditation, which involves concentration and focusing on particular sensations in the body without an attempt to control or influence those sensations. This allows me to stay in the present moment, develop concentration, and change my relationship with my pain. I’ve written a lot about it in previous blog posts.

Guided meditation involves, well, following a guide’s mental imagery. This could include a mental journey to a sacred or safe space, visualizing something that you want to happen, a guide to letting go of anger, and much more. I can’t speak to it as much, because most of my experience with guided meditation has been at the end of a yoga class.

Each of the healthjourneys meditations focus on a particular issue, including relaxation, sleep, PTSD, and even fibromyalgia. I bought the mp3 of the fibromyalgia CD, and I’ve been listening to it at night. One of the things mentioned in the CD is that it works even if you’re sleeping, because your unconscious brain will absorb what is said. I’m not sure how much scientific research has gone into that claim, but I will say that I’ve slept better than I have in years.

My favorite imagery on the fibromyalgia meditation involves listening to your body like it’s an old friend, as it’s your oldest companion. Belleruth takes you through a body scan. There’s also a lot of focus on the breath, and on breathing out negativity and taking in healing. It’s a really nice CD, and listening to it has definitely helped me fall asleep.

Meditation CDs are somewhat idiosyncratic, as what one person finds soothing another person may find annoying. Belleruth’s voice is deep, almost husky. At first it kind of made me giggle, but now I’m glad that it’s slow and steady. It makes her voice easier to sleep to. You can listen to an audio sample of the fibromyalgia meditation on this page, underneath where the checkout information is.

Each CD also has a series of affirmations, which you can apparently listen to in the car as well. I like the affirmations, so I mostly just listen to them when I’m sleeping.

Ever tried a guided meditation CDs? Feel free to comment with some of your experiences.

I think I’d forgotten fatigue was a main component of fibromyalgia. The pain can be so all-consuming at times. Do I take medication or try to manage it through other techniques like meditation? What time is my physical therapy appointment? Am I sitting with correct posture, or is this going to hurt later?

Lately, the fatigue has really been getting me down.

Sunday went something like this.

9:45 am: Oh great! I woke up before 10 am without the alarm. I must really be making progress with my sleep, I’m so excited.

11:00 am: Well, I’m kind of sleepy. The couch looks really nice for a nap right now. But I’m trying to cut out daytime sleep, so I’ll avoid it.

12:00 noon: Okay, maybe reading will distract me from wanting to sleep.

1:00 pm: Right-o, I have to get ready for an appointment. That should keep me occupied.

2:00-4:00 pm: Appointment happening. My eyes are a little blurry towards the end, and I’m having some trouble focusing. Is this fibro fog, fatigue, or something “normal”?

5:00 pm: Food sounds really good right now. I’ll do that.

6:00 pm: Back at the house. What to do?

6:05 pm: Oops, I sat with my neck turned to the left while I was listening to someone. Now my whole left side hurts. Ow ow ow.

6:30 pm: Shit, this really hurts. I guess I’ll take some medication.

6:45 pm: And the meds are making me drowsy. Well, I guess this is as good a reason as any to take a nap.

9:00 pm: Woke up from nap. Dammit, this is really going to throw my whole sleep cycle off.

9:30 pm: Better head towards getting sleepy – maybe read a book or something.

11:00 pm: Sucked into the internet vortex of webcomics, news articles, and random nonsense.

12:00 midnight: I should probably go to bed, but this is really interesting.

1:00 am: Is it 1:00 already? Well, I’ll head to bed in a minute.

2:000 am: Shit shit shit, I was really hoping to get my sleep cycle adjusted. I’ll brush my teeth and such.

2:30 am: In bed. Trying to fall asleep with my new relaxation CD. It seems to be helping, although mostly right now my breathing is nice and relaxed and my limbs feel heavyyyyyyyyyyyy…zzz.

And this is the saga of my day yesterday. It really feels like I’m stuck in this endless cycle of fighting with sleep. Will it be relaxing? How to coax myself to bed on time? How to wake up in the morning before it gets really late? And of course, the struggle to avoid daytime sleep.

I’ve read all of this stuff on sleep hygiene and the like, but it’s so much harder to do in practice.

I’ve been keeping a fairly comprehensive log of pain, sleep, exercise, food, weather, and general health. I’m still collecting data, and figuring out the best ways to analyze it. (How do I isolate variables when there are so many? I guess I should collect a lot of data points.)

There was one correlation that lept off the screen, and I thought I’d share it here in visual form. The two lines are “sleep quality” and “morning pain level,” both ranked on a 1-10 scale. In this case, one is the best possible scenario. Ten is really, really terrible.

See if you notice a pattern.

The part towards the right where it appears that there is only one line is actually the two lines overlapping.

I recently realized that I dread going to sleep. It’s not a nice, relaxing, mmm-this-is-going-to-be-good experience. I basically feel as though I go to bed, am unconscious (hopefully) for a number of hours, have the occasional bizarre dream, and wake up just as exhausted as when I first went to bed. I do not feel rested.

Apparently this is not normal, even though I’m so used to it at this point that I forget some people actually enjoy sleeping. Long story short, I’m going to see my doctor about sleep quality. Poor sleep is associated with fibromyalgia. I’m just hoping that something can be done about it.

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.

You hear references sometimes, many conjuring up images of toothless old geezers sitting on their rocking chairs, complaining about how they can tell a storms a-comin’. They can feel it in their bones.

Much has been written about possible connections between pain and weather – just do a quick google search on “pain and weather” – and there isn’t much agreement. There is some suggestion that barometric pressure, or particularly rapid changes in weather, are a strong indicator for increased pain. Still, it varies from patient to patient.

I haven’t researched this extensively lately – my main sources at this point are a 1995 N.Y. Times article and a Weather Channel article on Aches & Pains 101. Admittedly not the most reliable or exhaustive study. I would search more, except I’m recovering from a migraine that means that looking at the computer screen for too long makes me slightly queasy. Scratch that – I feel slightly queasy anyway. Of course, reading a mystery novel set in the practically tempest-filled Dartmoor, England probably didn’t help. (The book is quite good, though.)

I just started a new pain journal – more on that in another post – and have been tracking weather patterns, as well as things such as exercise, sleep, food, and of course pain.

What does today’s flare-up indicate? Inconclusive at this point.

The most I can point to is that it was an unfortunate conflation of triggers. I didn’t sleep until 3 am, and got up at noon. Spending so much time in bed hurt, and I forgot part of my previous night’s medication. It was bright and windy outside, and I had chocolate (a known migraine trigger). True, the barometric pressure changed rapidly – dropping from 29.96 inches Friday to 29.69 Saturday, then increasing today to the 30.11 range. (I use averages for simplicity.)

Is it the pressure? The chocolate? The sleep patterns? Or some nebulous interaction?

One data point amidst four days of symptom tracking doth not a pattern make. It does strengthen my commitment to keeping a pain log, to see what I might find.

Do you ever have one of those days where your body says, “Whoa whoa whoa, slow down! You’d better rest up or you’ll have to pay for it!”

I’m having one of those days. Yesterday I was very “productive,” in the sense that I made a lot of food and then cleaned up the kitchen. (Healthy and delicious food, I might add.) I think I would have been okay if I hadn’t made the spicy olive oil bread dip, or maybe if I hadn’t gone out afterwards to pick some friends up at the airport from their 10:30 pm flight.

Either way, my body is saying, “Rest.”

So I’m going to listen, otherwise it will get much more insistent. It’s like fibromyalgia is a voice for my mind, body, and spirit. Enough stress on any one of them, and fibromyalgia gets a wee bit louder.

“Pssst, hey, you might want to lift with your knees next time.” (back gives a twinge.)

“Okay, if you’re going to walk around a lot at least wear those inserts the doctor gave you.” (slight foot pain added to the chorus)

“Do we have to stand by the kitchen pot the entire time it’s steaming? Can’t we set a timer and go sit down?” (fatigue)

“Wait, you’re going to cook something else? Okay, but we better get to eat it once you’re done. We’re hungry.” (hunger, fatigue, and pain)

“Dishes? Okay, there are a lot of dishes. But you had better sit down and rest after the dishes, young lady, or you will be sorry.” (pain and more fatigue)

“You want to extend your curfew so you can go out tonight? Well, if you do that you have to rest tomorrow. I mean it. No going out to the museum like you wanted to.” (really, really tired, on the edge of a headache)

Every time, my body ratchets up the pain and fatigue just a notch – trying to get me to notice my limits. If I really, really don’t pay attention, it screams at me. (Or as a friend says, I have to “pay the piper.”) That’s when it takes the stern-parent-you-are-SO-grounded approach by incapacitating me for several days – or more. “You will rest, because I said so.”

Honestly, I think all people have these kind of limits. If you are “able-bodied” and you run on little sleep for a long time, your start getting cranky, have trouble driving, etc. It just takes longer for your body to scream at you. With fibro, it’s like my body is a little trigger-happy, and is VERY insistent that I know my limits.

It’s that balancing act I was talking about the other day, although maybe I’m personifying my fibromyalgia a little bit.

Winston Churchill had severe depression, which he described as his “black dog” that followed him everywhere. I suppose fibromyalgia is a little bit like that, although I picture it more as a little gremlin on my shoulder that starts gnawing on me if I don’t listen. Or maybe it’s more like my own body rebelling, and us a time-out. After all, why create this artifical divide between “my body” and “me”? That’s a subject for a different post.

Signing off now, so I can go rest.

It so often seems that the key to Fibromyalgia is balance: balance in eating, in finding the right amount of quality sleep, and perhaps most importantly finding a balance in movement. This has been documented in numerous studies and several blog posts I’ve written.

We know exercise is good for us. The media likes to remind us all the time, and people as influential as First Lady Michelle Obama are putting healthy movement (and healthy eating) at the forefront.

I find that one of the trickiest parts for me is finding the right amount and intensity of exercise. Under-doing exercise leads to weakened muscles, increased pain, and even poor mood. Over-doing exercise often leads to pain flares.

One has to gradually work up to doing greater and greater amounts of exercise. This is true of anyone trying a new exercise routine. If an able-bodied person tries lifting 50 lb weights with no previous experience, they’re going to hurt themselves. When I’ve done very mild weight lifting, my physical therapist has started me off with no weights or even soup cans (a handy 1 lb. h ousehold weight).

The problem is that I want to do things. I was so excited and proud last week because I was wearing my pedometer and I walked almost 10,000 steps – the golden number that everyone says one should aim for. My steps generally vary from 2,000 (on very sedentary days) to 7,500 (on very active days). So this was a Big Deal. (Tip for anyone trying to increase their steps while using a pedometer: lose something. You will walk around a lot trying to find it. Also, go shopping. There’s a lot of walking involved and you hardly notice it.)

Anyway, midway through the day I decided I’d do a little work in the garden. I have some table-top container gardening that I can do that doesn’t over-stretch my back. Did I work on those? Noooo, I decided to re-pot some (terribly potbound) things on the ground. I wasn’t super-careful about how I was lifting things.

The following day was pain. Lots and lots of pain.

It would be easy to let experiences like these scare me off from exercising. Exercise is pain, right? Well, no – too much exercise is pain. Somewhere out there is a magic amount of exercise that is “just right,” a la Goldilocks and the Three Bears. To make it more interesting, the number moves based on how I’m feeling on a particular day and how much exercise I’ve been doing lately.

I know I’m going to make mistakes and overdo it sometimes. There are just days when I seize the moment, and the moment happens to be a little too much. I know there are going to be days when I can’t seem to motivate myself to move out of bed, much less exercise. I can have compassion for myself on these days instead of beating myself up over what I “should” have done.

In between the paradox of too much and too little, I walk.

Hopefully for 10,000 steps.

Going to sleep with a view of pine trees and innumerable stars, waking to bird calls and dew: these are the things that make camping worthwhile. Some parts of my strategy for camping with fibromyalgia worked very well; others need improvement. Here’s a run-down of the results.

  • Getting there: the drive to the campground was okay. We stretched several times and stopped for lunch. The drive back was harder. The total trip was 355 miles, as we spent a fair bit of time driving around the area checking out different beaches and looking for restaurants. We were in a hurry on the way back, and didn’t stop as often as we probably should have. This was beginning to trigger a pain flare, but I managed to nip it in the bud.
  • Having a co-camper ally to help manage the gear worked like a charm. (Thanks, camping buddy!) We’d both practiced setting the tent up recently, so that went off without a hitch.
  • Sleeping arrangements: my camping mat and other gear kept me warm, dry, and comfy. I do have some ideas for making sleep even better. I may want to try using an air mattress in the future, as a friend tipped me off that it’s even more comfortable than a thick camping mat. It may be more bulky to move around, though. It’s something to try. Another consideration is that I did two trial runs in the backyard this week, for a total of three nights sleeping on a mat on the ground. The extra runs made me a little extra sore. The trial runs won’t be necessary next time, fortunately.
  • Morning stiffness – I did some stretching, and that seemed to take care of most of it.
  • Other issues: We should have done more research on where to eat. We planned to eat out and not worry about cooking at the campsite. A number of restaurants were closed as it’s the off-season at the beach. It seemed like the only restaurants we could find had fried food or $30-a-plate dinners. We also looked for restaurants when we were already hungry – a sure way to get cranky and desperate.

Overall, it was a good trip. I did have to take steps to prevent a pain flare when we got back: medication, hot shower, lots of stretching. In the future, I may want to try using an air mattress, planning restaurants in advance, and taking my own advice about spacing out time in the car.

As promised, here are some photos from camping. (Real update coming Monday!)

View of the tent

We have a Mountain Hardware Light wedge 3, which is…light. And rather small, but perfectly acceptable for our needs. Although it would be nice if we could stand up in it…The site was perfect – pine needles are comfy to sleep on, and as it’s the off season it was very quiet. We also (accidentally) ended up getting one of the larger sites, which was wonderful.

View from the tent

This is a view from behind the tent – we positioned it so that at night we could look out from our tent “window” and see the stars. There are so many once you get away from a city!

Campsite at Dawn

When we woke up! It was gorgeous, even though it was a little disconcerting to be roaming about that early.

Beach!

Aside from testing the camping equipment, this was the whole point of our trip. It was too cold to swim – brrr, Atlantic in April – but walking alongside it was very relaxing.

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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