The doctor took a cursory look in my left ear, and then moved to the right, where he paused, poked his ear thingy farther in and pulled on my ear lobe a little. “Doesn’t your ear hurt?” he murmured. Should it? “Well, your eardrum is red and inflamed…” Huh. My right ear is the only thing on my body that doesn’t hurt. What’s up with that? So I went home with an antibiotic on top of an inhaler and prednisone to combat the swelling in my bronchial tube. Go in with a cough and achy lungs. Come out with an ear infection. Laying in bed after swallowing a couple seriously giant pills despite a sore throat, hoping I don’t break out in a rash or hives… yep, my right ear is still the only thing on my body that doesn’t hurt right now. Well, the left ear isn’t too bad. No big deal, right?
Actually, it’s a pretty good illustration of the “danger” of fibromyalgia. Fibromyalgia won’t kill you. It’ll slow you down, but not kill you. However, when you have a flare up, like I’m having now as a consequence of a streak of very bad sleep and now a respiratory infection, it is very possible to lose track of things that should be paid attention to. The pain processing system in the brain is messed up. It’s rare (for me), but it can happen that you don’t get the signal for “hey, look in your ear – you have an inflamed and red eardrum and need an antibiotic.” If (and when) you start shying away from doctors because you’re convinced that it’s a waste of time, things can slip right by.
It’s also very possible to ignore those very proper hey-there-is-something-wrong-right-here-pay-attention signals because you train yourself to turn off the pain signal, just ignore it because so often, 99.9% of the time, it is meaningless – just your body complaining (kind of like someone with a well-paying job and a solid retirement plan complaining about being broke). Therefore, as important as it is to not run to the doctor every time something twinges, it’s equally important to have regular checkups and to be aware of new or unusual pains. In the meantime, I’ll be grateful for the pain disconnect for as long as it lasts.
I finally did it – made up my own word. Antisomnamnalnocturnology. It’s a good word. In layperson’s terms, it means – being so tired you can’t keep your eyes open, sit up straight, or speak without slurring, much less think in more than 2-word, subject-verb sentences, and even less think rationally and critically, so you climb into bed, nestle into the memory foam and pillows and close your eyes and do no more than daydream all night. At best, your brain gets stuck on a song, usually just the chorus, and you think it over and over, which does not equal counting sheep. At worst, you are going over a list of the things you didn’t get done at work or the things that are pending for the next day, next week, next month, next year… retirement… You can’t open your eyes, read a book to fall asleep, play video games. Nothing. You’re awake and not all at the same time. This is not a condition particular to fibromyalgia.
When you add chronic antisomnamnalnocturnology to fibromyalgia, things sort of spiral out of control. Standing up can be slightly hazardous. Stairs are downright hostile. Brain? Brain? Who took the brain? In addition, you become susceptible to the little creepy crawly things. Bring on the colds, flus, respiratory infections, even skin outbreaks. Headaches… Forget about any boxing championships – making a fist is out of the question. Typing…. Your poor cats can’t massage you without stepping directly through you – plan on bruises. I can add to the list. Just figure using your joints, muscles, eyes, brain are out of the question. At least for awhile.
The cure? Sleep. Solid, sleep. The problem is, antisomnamnalnocturnology + fibromyalgia = pain without movement. Yep, it means laying in bed trying to sleep while not being able to get comfortable because the sharp shooting pains just happen without warning. The “white noise” pain is more like microphone feedback. The brain doesn’t stop. So wish me luck. I’ve had several nights of an antisomnamnalnocturnology outbreak. I have the pain, the brain fog, the respiratory infection. Now I need to sleep. Wish me luck.
Burke et al is a fascinating article. I’ve read through it a couple times and am now working on making connections, and there are a lot of connections to note. While I work my way through that, there are a few things that have jumped out at me and bit me right in the eye. Or the butt. Or both.
First, stress is not stress is not stress is not stress. The poor baby rats that were experimented on were subjected to a wide variety of stress. The three main types of stress were maternal separation, maternal deprivation, and neonatal limited bedding. Both maternal deprivation and neonatal limited bedding mimicked parental neglect of a young one. Maternal separation is exactly what it sounds like – the babies were separated from the mommies, not necessarily permanently but for periods of time. There were a lot of nuances in the degrees of deprivation and separation, and they were mixed occasionally with pain stress along with the psychological/emotional stress. What’s remarkable is that for each of the different scenarios, there are different physiological outcomes. MS victims do not have the same outcomes as MD or NLB victims.
Second, female and male rats do NOT have the same outcomes in the same scenarios. There are distinct differences in the way female pain processing systems develop under stress and the way male pain processing systems develop under the same stress. It’s remarkable. It’s possible, with the results they discuss, that male rats need more stress to affect their development than females do. However, there are still scenarios that affect male rats more than female rats, so it’s not a matter of male rats being “tougher.”
Third, and this has come up before, but it seems established by the studies they are reviewing, there is a difference between how the body reacts to sudden and short-lived stress and how it reacts to long term stress. For acute stress – imagine being in an accident or seeing a loved one in trouble, and maybe those times of superhuman strength when you pick a car up off your father or tackle the bad guy that just shot you without noticing that you are shot – the body shuts down the pain processing system so it can react unencumbered by pain. At the opposite end of the spectrum, chronic pain actually physically increases the pain receptors in the body, so when the system becomes sensitized, it’s not “all in your head,” it has actually physically changed your pain processing system.
Fascinating article – it’s going to take a page. I’ll let you know when I get it done….
In reference to the previous blog re childhood trauma actually affecting the physical development of the pain processing system, a friend very aptly asked, why doesn’t everyone who has physical or psychological trauma in their formative years develop a chronic pain disorder? Remember the tests that were reviewed in the article done on a LOT of poor little rats were not testing for the development of fibromyalgia in particular. If all chronic pain disorders are taken into account, including PTSD, CLBP, and a lot of other acronyms, the percentage increases drastically. However, I know it will not reach 100%. Why not?
I dunno. However, in the reading that I’ve done, there is a very strong genetic correlation to the risk factors for developing a chronic pain syndrome like fibromyalgia. I would have to dig around to see which alleles have been targeted (notice I just throw that term “allele” around like I understand it?) as indicating a risk factor. Of course nothing is definitive, but I wonder if you combine factors to create the perfect storm, you get chronic pain disorders.
For example, one set of researchers focused on preterm babies and the physical trauma they go through and how there is a probable connection to later pain disorders. They have actually been able to see (or hypothesize) what parts of the pain processing systems are messed up (if I’m reading correctly) by early childhood surgeries. Let’s say 100 babies are delivered prematurely, presumably with complications requiring surgery. At the outset, there is a 4% to 7% chance that they will develop fibromyalgia (the approximate percentage of the general population affected by it). Let’s say another 25% of the babies eventually develop a chronic pain disorder, whether fibro or other. That would leave a 68% to 71% of the 100 babies who would lead a “normal” life. Why? Perhaps the 29% to 32% have the genetic makeup to increase their risk, and which may even facilitate the abnormal development of their pain processing systems. Perhaps the 68% to 71% have a genetic makeup that either helps prevent the development of chronic pain or maybe is the foundation of a healthy pain processing system.
The opposite is the same: 100 full term babies with no or little trauma, physical or psychological, and 4% to 7% will probably develop a chronic pain disorder.
In short, like everything else about fibromyalgia, it would seem like no one particular cause can be pinpointed, but I’m kind of liking this bundle theory, for what that may be worth.
I admit to sometimes being defensive about fibromyalgia. Days like today when I’ve essentially stayed in bed the whole day make me feel like a lazy butt slacker, and natural paranoia makes me figure everyone else views me that way too. I recently read an article (see Busse et al in library) which evaluated attitudes of patients have about how they think other people view them and how other people actually do view them. The two don’t match. People with fibro figure “regular” people have a negative attitude toward them, but “regular” people actually regard people with fibromyalgia with empathy rather than being judgmental. It was interesting to see that people with fibro not only kind of worry about other people’s impression of them, but that the perception of negative impression is possibly a projection of the fibro patient’s own self-perception. In short, I’ve really resisted the idea of fibromyalgia being a stress reaction, a psychological reaction, because that puts it in the “it’s all in your head” realm, which then compounds the way attitudes are perceived.
There’s a different way to look at it all, however. I just read an article titled, “Psychological Stress in Early Life as a Predisposing Factor for the Development of Chronic Pain: Clinical and Preclinical Evidence and Neurobiological Mechanisms” by Burke et al (see library). I’ll have to add another page to the main website to be able to summarize this review article properly, but essentially, it explains how stress – either psychological or physical – in early childhood does predict the development of chronic pain disorders, such as fibromyalgia. Physical and/or psychological stress during formative years stimulates or inhibits the proper development of the pain processing system.
It makes sense. There are cultures that have bound feet, causing deformation of the soft bones that have not fully developed, or have created elongated necks (which is actually deforming the shoulders by pushing them downward), or even bound unformed skulls to create an elongated head. The human body is pliable at birth, and according to this article, chronic pain disorders (including arthritis, which has never been considered a psychological disorder) can be considered a kind of developmental malformation of the pain processing system caused by something akin to binding pliable bones.
Thinking about it that way is a little bit of a conundrum, difficult to twist the head around, but at the same time, it answers the chicken and the egg question pretty definitively. I think the next step for me to fully understand this theory (which has been pretty extensively tested with pretty tragic animal testing) is to compare the hormones and chemicals that are released by stress to the hormones and chemicals that are required for the proper development of the pain processing system. If they correlate, then it seems like there’s a possibility for prevention. Nope, medical school is out of the question….
I feel like I’ve been hit by a speeding Peterbilt truck hauling Christmas trees the weekend before Black Friday weekend. If you’d like me to be more specific… starting on the floor….
- Feet and ankles. I think they’re still attached. Not sure… wait, yes, they’re attached. They’re swollen and when I move my toes and ankles, they crack.
- Shins. If I point my toes, the muscles in my shins kink up and threaten to knot.
- Knees. They feel swollen. Sharp pains with movement. Mild ache without movement.
- Hips and butt. Sharp pains with and without movement.
- Shoulders. Constant ache with or without moving, like I’ve been lifting weight.
- Arm muscles. Aching, both upper and lower arms.
- Elbows. Sharp pains when arms are straightened.
- Wrists. Swollen and painful.
- Hands. Swollen, each joint painful. Palms of the hands ache. The troublesome pinky flairing. Feeling weak.
- Lower back ache with movement.
- Mid back ache with and without movement.
- Upper back between the shoulder blades. Sore – goes through to my chest and down to my ribs. Lungs feel like I’ve been exercising, tight breaths. Constant ache.
- Neck. Sore and stiff.
- Head. Light headache. Eyes too sore to keep open.
- Skin hurts.
- “White noise pain” up and down, connected to skin aching, joint pain without movement. Feels a bit like the flu with waves of pain sort of ebbing and flowing as I lie in bed.
- Muscles top to bottom are sore like I’ve been running.
- Flat-on-my-back fatigue. Slept from 12:30 AM to about 7:30. Then about 10:00-12:30. Determined to stay awake now.
So that’s what overdoing it feels like. Nothing really unusual after a day of driving and walking and touring. Got up at about 6:00 AM, on the road by 7:00 AM, drove to Duluth, walked the downtown, toured Glensheen, walked a bit more, explored by car. On the road before 8:00 PM, home a bit before midnight. Great day out.
Fibromyalgia requires choices. I knew I would feel like this before I said, yeah let’s do it. I can say yeah let’s do it or no I’m going to sit home and be safe. As it is, I know I’ll have to take it easy today and get myself to work and back tomorrow. Sleep as much as possible. Tuesday I’ll still not feel well, but I’ll be well enough to go to SWEAT on Tuesday night, and that exercise may help with the muscle pain by giving me a different type of exertion. It won’t make things worse, but psychologically it will be difficult to walk in the door. That’s the prediction. And now I’ll rest and not think about it anymore. Remember thinking about pain will make the pain worse. Was it worth it? Oh yeah.