(I actually wrote this a little while back, but it's fairly accurate.)
After stumbling across a blog the other day, written by a self-described “fibro fighter”, I am inspired to share my story of life with fibromyalgia [http://myfibrostory.wordpress.com/]. She wrote a post describing a “flare-up” day (one particularly worse than normal), so I wanted to write a similar post, but of a typical day in my life. I hope this helps others understand (or maybe other FM sufferers explain) what it’s like to deal with this condition on a daily basis. The nature of fibromyalgia is that it varies greatly from person to person, so my experience is unique. Readers should understand that not every person with fibromyalgia copes with it to the level I do, and some cope far better, just as not everyone deals with as much as I do, and some struggle with much more.
Right now, I work 7 days of each 14, 12-hour shifts as a nurse. Because those days are so much busier, it would be much harder to do a play-by-play of a typical work day, especially because the days when I work I’m so focused on getting out the door and my job that I am distracted from some of my pain, and it would be a very inaccurate look at what I live with daily. Instead, I picked one of my days off, though I am more aware of my pain when I don’t do as much, and I have a tendency to do the same thing for too long. I also happened to be getting over a cold. Anyway, the other thing you need to know is that I have been diagnosed with benign hypermobility syndrome, which is a fancy way of saying I’m sort of “double-jointed” everywhere. I crack my back and essentially every joint in my body, and sometimes it’s accidental and really painful and sometimes I do it even though it’s a brief sharp pain because I know it relieves longer-lasting dull pain.
This particular morning, I wake up at 7:45 to the sounds of men working in our apartment complex, one literally right outside our window. When I first reach consciousness, I'm aware that my left shoulder aches strongly because I laid on one side too long and squished it, despite my use of an extra-thick pillow. I pull at my shoulder to try to "pop" it (not really a joint shift, just the muscle shifting over the tip of my shoulder blade) but no luck. I get up to use the bathroom, and I probably look drunk as I walk unstably – my balance issues are more pronounced when I'm sleepy – and my lower back aches. I go back to bed.
At 10:30, I drag myself from sleep, trying to relax and wake up slowly. I’ve slept unusually well, but still don’t feel truly rested. That part is not unusual. I stretch and my muscles shudder, protesting my too-long hiatus from Pilates. I crack one hip, but the other is more difficult, and I don’t bother to try more positions until it cooperates. My husband comes in and climbs into bed to say good morning, but when he slings a leg across mine I subtly shift, because my knees were laying right one on top of the other and it is sharply uncomfortable. He kindly offers to bring me breakfast in bed and I cuddle with the cat who has been curled against my leg most of the night. I prop myself up with some pillows, but by the time I finish my cereal, my hips are protesting this position, my lower back joining in, so I move. I check my email on my phone, curled to one side, but my hips refuse to let me stay there for long, the pain getting louder and louder. At this point, I've taken my first pill of the day with breakfast, so I hope it kicks in soon. I twist in bed til I crack my lower back in both directions, but when I sit up with my knees up, my mid-back aches dully. My shoulders and neck feel tight, so I roll my head and shrug them; my neck cracks once, but in a way that relieves no pain. It is 10:55 and I am still in bed.
I sit at the edge of the bed, the sudden change in temperature making my knees stiffen. I stretch my arms, cracking both shoulders and elbows. Walking around my room I feel about 80 years old, and within three minutes desperately need to get some more clothing on since I’m almost starting to shiver. This is not because it is cold in my house (my thermostat says it’s nearly 70 degrees) but because I can’t really handle sudden drops in temperature.
11:20 am. A little while later, I sit on the couch with my laptop, while my knees, hips, and lower back ache quietly, a near-constant in the back of my mind. This is not too different from the days that I work – it’s not that my focus on my job makes my pain disappear, but it does distract me so that I can ignore it better. The reality is, even with my medication, the pain almost never truly goes away.
While I sit, working on my budget and checking Facebook, I have to change positions every few minutes to stay comfortable. I crack an ankle, shift so my knees don’t lock up, arch and curl my lower back to loosen it, stretch my triceps. At one point, I realize I need something from a folder in the other room. Despite my apparent fidgetiness, I feel settled, so I ask my husband to “do me a favor” (I think I always use that phrase) and ask him to get it for me. Though I still have difficulty asking people for help or admitting that I need to rely on others more than some, I have long since acknowledged that my husband truly does not mind doing things for me, and thankfully I have less trouble asking for and accepting the help. Still sitting, I crack an ankle again, and when I lean forward, pain shoots sharply across one shoulder blade. There is no reason I can pinpoint for this, and therefore nothing I know to do to make it stop. It passes.
I realize I can’t remember where I set my phone when it’s not in my pocket where I expect it to be. My husband, Andrew, glances around for it for me since he’s already in the other room, and I rack my brain trying to think of what I might have done with it. Moments like this are known to fibromyalgia sufferers as “fibro fog”. Because the brain is distracted by pain, and perhaps because we nearly all have difficulty sleeping, we tend to have concentration and memory problems. Some people dismiss these as, “everyone is forgetful sometimes”, and when I describe how I walk into a room and then can’t remember why I came in the first place, people tell me “Oh, I do that too”. It’s as if they’re telling me to not worry about it, that it’s normal, but the reality is, it’s not. It is pretty common for a 45- or 50-year-old to become forgetful (my mom does), but I’m 23, and it doesn’t just happen “sometimes”, things like this literally happen multiple times a day. My husband calls my cell phone and it rings right next to me, tucked into a blanket we have covering the couch. I feel like an idiot.
As I continue to type, one knuckle on my left hand throbs randomly. I try to crack it, but can’t. Frustrated, I succeed in cracking four of five fingers on my right hand (it’s like itching the wrong place when you know you’re not supposed to scratch at something – useless, but we do it anyway). I try again to crack my finger and it resists, and now hurts more than before. This is the part I didn’t mention before, about cracking my joints. I said that sometimes I purposely crack them even though I know it will cause me sharp pain briefly, because I know that it will relieve a longer-lasting pain. I didn’t tell you that I frequently try to crack some part of my body and it doesn’t cooperate, and I’ve only managed to make it worse. It’s rather frustrating.
12:15 pm. Still typing, I pause to crack my wrist (that one’s easy, for some reason my wrists will crack over and over) and re-cross my legs, cracking my ankle again. Having gone through five regular kleenex in the last hour, I ask my husband (“do me a favor?” again) to bring me the box of Puffs. One thing that people have a hard time understanding is how numerous small pains can add up to feel as bad as one larger pain. I bring this up because my nose is starting to feel raw, and I know that it’s better for me to try to reduce even small pains (such as using Puffs) than to let it keep going. I usually explain it like this: everyone has a threshold of how much pain they can consider tolerable or ignore. Once that threshold is crossed, a person is much more likely to become fidgety, irritable, frustrated, or emotional. I’ve seen this in my patients, as well as my everyday life. I remember watching as one patient, a woman being treated for cancer, crossed that threshold. She had been dealing with her cancer pain pretty well, and medications were helping. Then, one day, she got a boil of sorts in the center of her back. It was like a large zit, but we couldn’t do much to treat it since if it opened up, it would be a route for infection to enter the body, and she was immunosuppressed as part of her treatment. We tried to position her with pillows to relieve her pain, but it wasn’t working. She finally gave up, and burst into tears. I sat with her and talked to her, and she expressed to me that she didn’t know why she was reacting to such a small pain like that. I pointed out to her that her pain had been close to her limit, her threshold, and this small thing was like the straw that broke the camel’s back. In my life, people who know me can usually tell I’m across that limit when I become snippy, whiny, or impatient. It is so much harder to keep these less-than-desirable behaviors in check when I am in a higher level of pain.
12:30 pm. I crack an ankle again (I actually didn’t realize how often I do this!), twist on the couch to crack my back both ways, and finally succeed in cracking that one knuckle.
12:40 pm. I watch Andrew play Wii for a while, and when I reassess my pain level, I conclude my Lyrica is working. Now’s as good a time as it gets for me to do Pilates.
Always the procrastinator, I work on my budget for a while longer before getting up. When I do, I’m very stiff from sitting, despite all my various positions, for nearly two hours. I move slowly, thinking that this is why I put off getting up. I have the same problem when I go to the movies, and sometimes even when we watch movies at home. Absorbed in the movie, I tend to stay in the same position (with muscles tensed if it’s suspenseful at all) for two hours. I try to shift position often, and at home Andrew and I will switch places halfway through the movie (for his scoliosis as much as for me), but still, I’m quite frequently among the last to the leave the theater simply because it takes that long for me to convince my stiff-and-protesting body to move.
1 pm. Andrew is on the phone with his dad, and I stand close to overhear some of the other side of the conversation. Andrew hugs me with one arm, rubbing a hand up and down my back, but I touch his arm and silently shake my head, not really able to tolerate any friction at this moment. He frowns, and I know he hates causing me pain accidentally. When the phone conversation is over, I plop on the couch for one more thing on my laptop before changing into workout clothes when pain flares suddenly, sharply, and severely in my hip. I contort on the couch trying to pop my hip, unable to keep from whimpering slightly, which catches Andrew’s attention. He moves toward me, asking me what’s wrong with concern, but keeps his distance, knowing better than to try to touch me at this point, even a gentle touch meant to comfort. I succeed in cracking the joint and the pain dissipates.
This kind of experience reminds me to mention something else I deal with every day. I can be extremely sensitive to touch, and it is often difficult to maneuver social situations because of it. A coworker playfully and lightly punches my arm, but it actually hurts. A man at our church greets Andrew and me enthusiastically by slapping me on the back and shaking Andrew’s hand vigorously. I know he means well, and socially/psychologically it’s a nice thing, but physically I almost dread it and cringe when he approaches. Seeing my best friend for the first time in awhile, we squeeze each other in a tight hug, and I fight the distraction of the mild pain this can cause me, because I love how it feels in every way but physical. This kind of interaction is made worse if I’m tired and therefore in more pain, or if someone’s shirt button pokes my sternum when we hug, or when Andrew forgets to take his watch off before trying to helpfully squeeze me to crack my back. It’s one of the things I hate most about fibromyalgia, its ability to taint the best parts of life (especially for a people-person like me).
A similar effect of fibromyalgia is the inability to tolerate certain clothes at certain times. I am always grateful, but there are days that I am extraordinarily grateful that my required work attire is scrubs and comfortable, functional shoes, instead of scratchier, stiffer clothing, or high heels. These items can be absolutely unbearable, depending on the day. I also dislike wearing skirts for an entire day because being lady-like requires that I keep my legs a certain way, when my condition necessitates that I shift positions and adjust my joints to reduce pain.
Considering what I’ve just described, people who have fibromyalgia seem overly sensitive, maybe even coming across to some people as weak, as if we just need to brush it off and toughen up. Here’s one thing most people don’t know about fibromyalgia – people who have it literally feel pain more than the average person. New research has brought to light objective evidence, through brain scans during experiments, that indicates that people who have fibromyalgia experience more pain than the average person with the same mildly painful stimulus [http://www.health.com/health/condition-article/0,,20326102,00.html]. This was rather gratifying to read, I must say, since I think it’s fair to say that nearly every person with fibromyalgia has either had someone tell them it’s all in their head or wondered that same thing on their own, most often prior to being diagnosed with the condition.
Back to my day – a few hours in the early afternoon are spent puttering around my house and exercising, and I try to make use of the time in which my pain level is significantly lessened by the peak action period of my medication. I take Lyrica twice a day, which gives me about 6 hours of pain reduction (not full relief) per pill. Anyone who can do math should notice that that doesn’t cover the entire time I’m awake on days that I work 12-hour shifts. Yeah, that sucks. [edit: I now have a prescription for 3 times a day!]
While I do Pilates, Andrew goes for a run. I have never liked running, but I go through phases where I want to like it for some reason. Not too long ago, I decided to apply for a nursing job in the army, and convinced myself to try to work out to the point where I could pass the physical tests to get in. This involved running, push-ups, and sit-ups every day for several weeks. As great as it was to challenge myself and push myself to work hard, and as nice as it was to see the muscular results, I accepted after a while that my knees would literally give out if I continued to try to push through the excruciating pain and keep running (at this point, I was running less than 2 miles a day). Running, along with other high-impact exercise, just isn’t for me. Pilates, swimming, and other low-impact exercises are great for fibromyalgia. I tried Pilates in a class for the first time in senior year of high school, and have been doing it off and on (on my own) since then. In my sophomore year of college, I took swimming for one semester, and loved it. It was challenging, but I was in probably the best shape of my life because I swam for at least two hours, twice a week. I was really disappointed when it didn’t fit in my class schedule any semester after that. Even with these exercises, though, I’ve had to make adjustments for fibromyalgia. There are positions in Pilates I can’t do without severe pain. There are times when my normal positions in Pilates are made difficult by a finger, wrist, elbow, or shoulder that feels out of place or needs to crack. I use a thicker mat for Pilates to protect my bony and sensitive body from the hard floor. Then there’s my ever-present balance problems that cause me to nearly fall over in some positions.
After Pilates, we eat lunch and I take a shower. Showers have been annoying for me since we moved into this house, since I can hardly ever get both the water temperature and pressure right. More often than not, I want the pressure higher, but end up getting the water too hot ( I’m also impatient and get in the shower too soon). This time, the water is just barely too hot for me, but it feels nice on my muscles, so I suck it up even as my skin turns pink. It’s a balancing act, getting the water hot enough to help my muscles, but not so hot that I can’t stand the pain.
5 pm. For the last little while, I have been sitting with my computer, shifting more and more in discomfort before it finally hits me that I’m overdue to take my second dose of Lyrica. When I’m at work, I usually remember to take it at the same time each day because I get up and take my first dose at the same time. On my off days, my schedule varies more because I like to sleep in, but then I don’t keep track of the timing of my second dose as well. This understandably perplexes some people, since one would think that if I’m in pain, I’d know that it’s time to take my medicine. Unfortunately, this is a side effect of having chronic pain. One of the ways I deal with my pain is to ignore it as much as I can, focusing on work, and taking advantage of other distractions. As a result, I ignore my pain even as it increases, out of habit, and it is usually only when I am far overdue and at a much higher level of pain that I consciously recognize that I need my meds. Regrettably, the way I often belatedly recognize that I should take my medicine is that I become more impatient, more easily frustrated, or snap at someone.
5:45 pm. I get on Pinterest to find ideas for dinner, and pick an easy chicken recipe for the chicken in my fridge. As I move around the kitchen to pull out everything I need to make the chicken and some cornbread from a mix, I deal with pain in my lower back and legs. When I can, I use the stool that stays in the center of the kitchen for the purpose of getting me off my feet, but I get too focused sometimes and forget it’s there. I listen to music as I work, which is a helpful distraction. I had music on while I did Pilates earlier, too; it helps me hold positions longer by taking my focus off the pain in my muscles and making me almost lose track of how long I stay in a position. By the time the main dish is in the oven and the table set, my legs and back are protesting louder from standing still too much. Andrew helps with dishes while I cook, but I’m in enough pain that it’s somewhat dangerous to be around me, and I admit I snap at him once or twice. We sit down to eat and watch an episode of our favorite tv show, and my knee starts hurting more severely. I alternate between propping my leg on an extra chair and stretching it out on the floor.
7 pm. The thunderstorm that’s been threatening in the darkening sky the last four hours hits. I enjoy the sound of the rain but not the change in humidity. Through fibromyalgia, I have become a human barometer. I can often tell when a change in weather is coming, though usually only from warmer to colder, or when it rains. It’s not just that my pain gets worse, it’s some unique property of irritability that happens, and when I think about at all, I can attribute it to weather. Sometimes, I’ve even been more accurate than what’s been predicted. Once, on a Thursday, I was feeling the weather changing, and I had heard it was supposed to rain over the weekend. I told my roommate, “This is too much to be related to Saturday rain. I think it’s going to rain Friday.” She said, “I don’t know, it’s supposed to rain Saturday, not Friday…” but she looked up the detailed weather forecast, and sure enough, it had been adjusted to predict showers for Friday evening.
8:30 pm. I pick up around the house and play with the cat. Lying on the floor to pet him, I feel a twinge in my back. I twist on the floor to crack my back, and when that doesn’t work, I try again sitting up. Stretching relieves some of the pain, though I didn’t get a satisfying crack. I go to the kitchen to unpack my recently delivered mixer. Though I love getting packages and I have been excited for my new mixer, the box has actually been sitting in our house for two days now. I’ve been putting it off because there were dishes in its spot on the counter, and I didn’t want to deal with them, but also because I expected the box and mixer to be heavy, and didn’t feel like lifting it. I am pleasantly surprised by how light it is, excited I can pick the whole thing up with one hand. I unpack it happily and Andrew patiently listens as I enthusiastically explain how it works. He stands behind me as I sit on the stool, having remembered to use it while I hand washed the mixing bowl, and starts to rub my shoulders. He should know better by now that he can’t start that and walk away, so I convince him to sit on the couch and continue. I sit on the floor in front of him and he massages my shoulders for a few more minutes, and I ignore the hard part of the couch digging into my back for the enjoyment of the massage. He goes back to playing with the cat, who is loving the new box that held the mixer, and I move to the couch.
9:45 pm. Since it is the end of the day, my pain level overall is worse, though I really haven’t done much today. As I sit on the couch, my back aches, my hips throb, and pain is beginning to move higher up my neck. I decide it’s a reasonable time to start getting ready for bed, since I have to get up at 6 am for work tomorrow. I have to keep in mind to not get too much sleep, as well as remembering to get enough, because sleep issues go hand-in-hand with fibromyalgia. If I sleep too little, I am miserable. I become literally nonfunctional due to pain when I sleep less than 5 or 6 hours in a night (thanks, college, for helping me figure that one out!). On the other hand, if I stay in bed for too long, like when I purposely go back to sleep when my body wakes me up naturally after 8 or more hours, I am in bad shape too. I love sleep, and have felt like I have a continual sleep deficit since my fibromyalgia first began to assert itself (although I also went into 5 years of nursing school at the same time, so that might be part of it). I also have a memory foam mattress topper that made me love my bed, so it’s hard to remind myself that it’s bad to be in bed too long when it feels so good at the moment. I have tried over the years to find ways to help me sleep: Benadryl, Flexeril, Robaxin, etc. Although Benadryl makes me sleep, I wake up groggy, and the sleep doesn’t feel natural. I tried the Flexeril and Robaxin because they are muscle relaxers, with the theory that if I could help my muscles relax more in sleep, I could stop some of my pain from carrying over to the next day, which happens more on particularly bad pain days. Flexeril left my mouth dry, and the Robaxin is ok, but if I take it on an empty stomach and don’t fall asleep immediately, I get a stomachache. I don’t deal with insomnia, but I almost always wake up once or twice a night (that I remember), and even on nights I don’t, I don’t feel completely rested. One of the most interesting theories about fibromyalgia, in my opinion, is that sleep problems are not side effects but possible causes of fibromyalgia symptoms. There was research done in 1975 on healthy people that indicated that when their sleep cycles (especially deep sleep periods) were disrupted, they began to have symptoms like that of fibromyalgia [http://www.health.com/health/condition-article/0,,20326428,00.html]. My hope is that as more people become aware of fibromyalgia and as more research is done on treatments and causes, that researchers find some way to fix our sleep cycles and cure fibromyalgia.
Are you still with me? Thanks for reading my longest blog post ever. I hope this post enlightened, encouraged, informed, and otherwise helped you. If you have questions about fibromyalgia, I’m happy to answer them if you leave a comment, but you can also check out the links I've included.