(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.
