Fibromyalgia is not “just” feeling achy and tired

Word of Warning: This is a rant/life update post that also makes something of a point. Other chronic illness fighters may relate to the point, and I hope “healthy” readers can appreciate it and maybe learn something from it!

So without much adieu, here’s the point, nice and early, so you don’t have to read till the end. Point

As my husband has been known to say, “the point is the point.”

OK, just kidding. No such luck! But if you stare hard enough at it, and then look away, you will see a square. I hope that makes up for the the last 20 seconds of your life reading a bad joke. No money back guarantee for the next 20 seconds if you don’t see the square, though.


For the last month or so, I seem to be hopping between flares. This last one has lasted a few weeks, replete with intractable pain and bone-crushing fatigue that is made worse by lack of sleep. That I come close to passing out unwanted (often at my work desk) but then struggle to sleep at night just feels like an unfunny joke my brain is playing on me.

Sleep_PHDcomics

Although my husband is much more mobile now, I am still taking care of some house chores. After a full week of work, I was feeling the lack of adequate rest on the weekends for a while. It’s a bit like I kept making automatic payments out of an already overdrawn bank account. Except here we are dealing with the biological currency – ATP – adenine triphosphate, aka, raw naked energy.

ATP_overdrawn

If you’ve ever overdrawn your account, you know the overdraft fees that apply. It’s money that you pay for not having money to pay with in the first place. Well, the Bank of ATP is no charity either. Pushing forth on empty just pushes you deeper into a hole that becomes harder and harder to come out of. That’s where I was when the weather flip-flopped rapidly. Without any energy left in savings to speak of, I went down almost as fast as the barometer.

(In a bizarre way, this flare makes me feel vindicated that I did not just stop partaking in the chores for material pleasure — it actually made physical sense for me to spend the weekends resting, and recharging the battery for the following week.)

Since I also just started my new job, I don’t exactly have an abundance of leave time or bargaining chips (or any really!) accumulated yet. That means I simply have to push through, even as I am struggling to stay sitting up. I am also starting work much earlier these days. That means forcing my body to move before it’s had a chance to thaw, thus using up more energy for the “wake up” routine than it otherwise would.

Kind of like the chicken you didn’t have time to thaw before dinner, and now it’s going to take extra power to cook from frozen.

Which, all, finally brings me to the point of this post:

IMG_2001 (2)
And it’s a bloody big one too!
(or as “bloody” and “big” as the 2018 super blue blood moon ever got for me anyway)

All that about counting energy bars used for strenuous activities like “waking”, and struggling to breathe through the pain, and running while practically on empty, is what makes fibromyalgia a little more than just feeling a bit achy and tired.

I know a lot of people get achy when it’s rainy. Nobody likes waking up early after not getting a good night’s sleep. Everybody gets tired from time to time. And I know all of these people still do everything that I do, and maybe a dozen things more, and chalk it all up to “adulting” without a complaint.

So why can’t I? Because fibromyalgia is a bit more than just feeling a tad tired and achy sometimes. It’s feeling like that all the time. And I work through it too without most people even knowing I have a chronic pain condition.

But “achy” is not the same as the band of pain and muscle tightness and spasms that grip my chest and make every breath a struggle. And after having tasted quite a range of the pain menu (joint, muscle and nerve), I can safely say that the Iron Maiden — my most favorite metal and least favorite pain band [yes, the “band” pun was totally intended] — is the absolute pits.

Created with Microsoft Fresh Paint
It’s really amazing how much easier it is to fight the rest of me once I can BREATHE again!

That is a bit different from when someone is sore for a day or two from the weather or an especially hard exercise routine. They don’t have to brace for a major flare from ignored achiness, that might bring on new heights in pain sensation. The ache is the flare. It’s downhill from there.

In a fibro flare, on the other hand, I have been known to want to cry, but the fatigue is so all-encompassing that I realize it will take too much energy to cry. I have to save whatever is left of me to move my limbs and get through the day without passing out. A large part of what makes the flare worse is also poor sleep. What I once described to my doctor as an “all-body migraine” means I cannot get comfortable enough to sleep well, and lack of restful sleep in turn makes both the pain and the fatigue worse; and thence is triggered a vicious cycle.

Sleep
The reasons for staying up may not be the same, but as usual, Jorge Cham got the sentiment of the vicious cycle pretty right in this PHD comic!

Avoiding these kinds of flares that have the potential to floor you become of near-paramount importance in the management of a condition like FM. I have had to restructure my whole life, sometimes struggling to keep up with even the reduced pace, cutting back everywhere and on everything that I can, just to avoid these flares. I imagine people with chronic pain disorders know what I am talking about. But it is very hard to explain this to somebody who doesn’t see the struggle behind the shallow breaths, even when they otherwise know what being in pain feels like. They don’t have to worry about the localized pain turning into an all-over flare that literally affects every part of the body, everything from sore feet to a foggy head.

The centralized nature of this pain disorder also means that I never know where and when to expect an exacerbation of the pain. The back is a constant, so at least I know that’s a house guest who’s staying again today. But who else is coming to visit — and for how long? Is it going to be my arm? The wrist perhaps? Or maybe the knee, or the feet (are the ankles coming too?), or perhaps it’s going to be the thigh? Is the neck pain just from sleeping funny, or is this about to be a killer migraine? And how long will that last?

FMS
A snapshot from a video by open.osmosis.org explaining fibromyalgia as a central sensitization disorder (i.e., stemming from issues in the brain)

The uncertainty and unpredictability of pain due to a central sensitization disorder makes it very hard for people with only peripheral injury-related pain experience to understand or empathize with this kind of “achy”.

If you can expect a pain a certain way, it’s easier to take mitigating steps, which you know will work with some reliability. With centralized pain, you never know what to prepare for. And because you can’t be prepared for everything all the time, you are likely to be sometimes caught off guard. Like I know laying down helps me breathe again when the pain otherwise tightens the vise around my chest, but I cannot lay down at work.

And the fight it takes to keep sitting up when the pain is overpowering takes up more energy that I don’t have. I used to be a high-achieving student, so I know what “tired” feels like. I never dreamed it could be counting how many ATPs it took me to get out of bed this morning! Some days it takes more than others. So you can either plan your day accordingly, or, if you’re fresh out of choices, you go further into overdraft at the Bank of ATP. And then you feel the dire exhaustion that takes “tired” to the next level.

My friend describes it as being like a “zombie”. Well, it’s pretty accurate. I was alive and moving, but all the life juice was taken out of me, and I was just performing the motions. I felt like I might collapse into a bag of bones the minute I didn’t pay explicit attention to allocating the necessary resources to hold my body upright.

Created with Microsoft Fresh Paint
It’s a great exercise in mindfulness — paying attention to holding your body up — but I really don’t recommend it.

All of this constant daily struggling, peppered by knock-out flares, is why fibromyalgia is not just feeling “kinda tired” and “a bit achy” once in a while. That’s why, even when people are not trying to be belittling, I can only sigh when I hear things like, “you’re fine, everybody gets tired”, or “I didn’t feel like waking up this morning either”, or “yeah, this weather’s hard on everyone”. I appreciate that people often mean well, and are trying to be kind when they say those things. I just wish that before they said it, they had a small inkling of what we truly felt like.

Love,

Fibronacci

25 thoughts on “Fibromyalgia is not “just” feeling achy and tired

  1. I just wanted to let you know that I hear you, and that I totally “get it” because it’s really not simply feeling tired at all! It’s that overwhelming fatigue, the pain and aches and exhaustion that is bone deep and unshakeable. I love the analogues, both the automatic payments from an overdrawn account and needing more power to thaw the chicken! You have a lot going on right now at home and with the new job – Please rest up as much as you can and know that I’m sending my best thoughts your way  ♥
    Caz xx

    Liked by 2 people

    1. Thank you so much Caz! Your understanding and support means a lot to me. ❤ I have been using practically every off day resting for the past couple of weeks, and I pushed myself to start my warm water exercises again. I am desperate to get this flare back under control somehow. Yesterday was the first day I felt somewhat bright and clear in the head (though still pretty scrambled up – if that makes any sense lol!). But I am hoping that I am edging closer to the end of the tunnel bit by bit.

      Liked by 2 people

      1. It’s one of those things with flares I think that we just have to ride them out. I have a lot of trouble with doing it because there’s always part of my brain that wants to keep pushing, that doesn’t want to let my body rest, despite my brain being befuddled and my body exhausted. Sounds like, fingers crossed, things are lifting somewhat now so I hope you feel brighter and a little better tomorrow (though I hate saying ‘feel better’ because it’s only ever ‘better’ to our usual baseline, not exactly the ‘normal’ level most people have and think of when this is said!) xx

        Liked by 2 people

        1. Thank you! I am hoping so as well, but I’m also starting to develop a migraine, so who knows what might happen yet. Still hoping for the best though! 😃 I have a hard time convincing myself to rest up too. But this time I knew I didn’t have a choice. It was either rest or total eventual collapse.

          And I know what you mean about “better”. . . I have had to redefine that word for myself, lol! Right now, better would simply be if I could simply breathe normal and stop spasming.

          Liked by 2 people

    1. Yes! PHD comics is (just about) so universally applicable to my life lol!! Have you seen the films? I’ve seen the first one, and really enjoyed it. It’s a niche taste in humor, but anyone who’s ever been a grad student will probably get it and think it funny! 😁

      Liked by 1 person

  2. You know from my blogs I get it. If I’m to be completely honest, I worry about you pushing too hard. I was there where you are and after working full time and homeschooling my son at night and doing daily walking and yoga I crashed and have yet to recover. Please be careful. 🌸 I say that not to scare you but to reinforce your intuition into what is best for you. If a little voice in your head is saying slow down, I hope you can. I didn’t but the little voice wasn’t that loud. I just knew I needed a change, and I thought I’d have more time to make one. Contemplating posting this at all😬 And I’m going to, please don’t take it as bossy or trying to invoke fear, it’s coming from care only.🌼

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    1. I know you do… All of us in this community do. And you know how much I appreciate your support. ❤ It is just sad when we hear things like that from people who don't really know what we go through. I remember seeing somebody on TED talk once, for instance, trashing CFS as a diagnosis. I have heard similar things regarding FM. This was directed more at that sorta stuff. And just a general letting loose of a lot of pent up frustration, and need to try and put in words what is so hard for me to talk about.

      And sigh, I know you are right. And I know you care. You are an absolute sweetheart! 🙂 ❤ This was too much to talk about in a already long post, but the main reason I left academia was largely because I couldn't deal with the how many hours you were expected to work. I swapped the 60-80 for a 40h work week. So it's really hitting my self esteem hard if I cannot even do this. Like I already left one career track, just started another, and my body is failing me *again* at a job I am performing well at so far. A job that's interesting and was supposed to be my compromise… I slowed down before as a grad student, reimagined my identity, thought about how I can be a scientist without killing myself… so to struggle now so early into this job is heartbreaking for me. A lot of complicated feelings going on there; maybe I will write about more of this in another post. :/ I am trying to rest more though. And in an effort to actively do something about my FM flares, I am trying to start my therapy pool classes again. The warm water exercises did me good before, I hope they can again. I think it will be easier when my husband is fully recovered again; hoping that happens soon!

      Liked by 2 people

      1. Far and wide those of us with these illnesses, FM and CFS, are ones who push themselves until there’s nothing left to give. It’s a bitter irony to then have others think we are lazy when really we are trapped in our own bodies. Bodies that have failed us, failed our very souls. Thank you for reassuring me that I didn’t step on your toes. You too are very, very kind. Hoping today proves restful for you and that you’re one of the lucky ones to have tomorrow off too!😊 Take good care 🌸

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        1. Bitter irony indeed! My ex-boss once told me I have to “deal with it” when I said how I can’t do certain things anymore. My response was “That’s exactly what I am doing.” Drawing boundaries at where I feel my body will collapse if I go, is the very essence of “dealing with it” I think, but that is so hard to explain to others who think we are just being lazy. Stuff like shouldn’t hurt so, but it still does. So yes I know exactly what you mean.

          I don’t have tomorrow off, but I did have last Tuesday off for Mardi Gras. 😀 For the past few weeks, I have been resting every single off day. That has sometimes meant sleeping through the majority of the day (hence, the lack of activity on my blog or instagram art page)! Really hoping things start to look up this week. 🙂

          Liked by 1 person

        2. Just so you know, I really took your comment and advice to heart this morning — enough to look into what kinds of accommodations are allowed by our state’s civil service to help out people like me. I have decided that if things don’t get better for me in time, I might have to talk about working later hours or maybe one day from home or something like that. 🙂 Just wanted you to know that I took you seriously, and you definitely did not step on my toes. You just amplified a voice in my head that was already there, and gave it a more positive spin instead of the negative attitude it was coming at me with. 😀

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    2. P.S. Please never be afraid to speak your mind with me. Trust me, I will never think you bossy, or anything other than the sweetest person ever. I know you care, and I know you understand. Your friendship and understanding mean a lot to me. 🙂

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  3. It sounds like things have been rough for you. With a chronic condition, there is only so much you can control when it happens and control how you feel. Hopefully it isn’t getting in the way of work and as you said, you are coming in early and taking things slow. Not getting a good sleep affects all of us so bad. For me, if I don’t sleep well, it plays up the pains my scoliosis brings on top of feeling tired in general – and then it affects you both physically and mentally. I suppose sometimes people just don’t know and don’t know how you feel like as you said at the end. They probably are luckier physically and sometimes certain conditions aren’t that well-known. Then again, the world would be a better place if we all showed a little more compassion.

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    1. The world would indeed be a kinder place if we had more people like you Mabel! 🙂 I am so sorry to hear about your scoliosis. That sounds terribly painful. 😦 I knew a fellow-student around 4th or 5th grade who had scoliosis. The teachers would sometimes ask us to carry her school bag for her. We were too young to know what was wrong then, just knew it was something about her back. I think she only stayed in our school for a year before she moved away. I have often thought of her as an adult, and how she dealt with it all at such a young age with such quiet dignity. I imagine she must be having days where she is tearing up inside like I do sometimes now, while keeping a calm veneer over it all.

      One large problem with FM indeed is that it’s not very well known. Even medical professionals disagree about so much of it. Part of what I am hoping my blog can do is shed some “first-hand” light on what living with this condition is like. And you are right, people often really don’t know what to say, and try to do their best. The trouble with me also is that I don’t really talk about how I feel when I am face to face with people. So I never think any worse of them for things they say — how are they supposed to know how I feel if I don’t say anything? So then here I am, in my corner of the internet trying to quietly spread the word anonymously LOL. Maybe it will reach some people after all. 🙂

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      1. You are very kind, Fibro. My scoliosis is no where near as painful when I was in school. But it is annoying enough to know it is there. Things like finding a comfortable position to sleep can be annoying.

        There are many aspects to a chronic illness, and I think you are doing a great job of covering they physical, emotional and mental sides of coping with it. People can judge, but they are entitled to their own opinion too. The more we talk about these conditions, though, the more we can raise awareness about them.

        Liked by 1 person

        1. Yes I can imagine sleep being a difficult expedition with a structural problem in the back. :/ Are there special pillows or supports to help you find a comfortable position? Do braces help you for everyday activities?

          Thank you, I am glad you find this blog give a good voice to to the condition. I try not to care about people judging, but somehow it’s easier to care less when I am largely anonymous lol! Awareness is all I hope to accomplish from this blog. 🙂

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          1. There are special pillows, and my condition isn’t bad enough for a brace. I’ve tried different positions but it is still hard.

            Looking forward to see what else you’ll cover on your condition. With a chronic illness, it affects not just you physically and emotionally but so many aspects of your life, including family and social life.

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            1. Funny you should mentioned family life – I was just thinking about writing a bit about how my husband and I manage. To give you a heads up, he is my light in the world, I don’t know what I would have done without him, so it’s going to be a much more positive article than this current one. 🙂
              As for a social life – I don’t really have one, never did – just not a hugely social person – so I miss less of that. 😛

              Liked by 1 person

      2. Sadly I realized a few things in the last decade. I knew that doctors do not have time to read journals and blogs about fringe disorders, disorders that have not yet made it into textbooks. Textbooks are sacred and everything else suspicious, because openness to non-textbook stuff will take you into the realms of pseudoscience and you won’t know where to draw the line. I get it. But what I realized and something which saddened me was that your childhood friends who are doctors would also be unwilling to read up more on the disease you have or read your blog, because 1. they do not have the time, 2. the thing is a fringe thing they believe they will never need to diagnose. They really do not have the time or mindspace (certainly any free time will not be spent on reading sick people’s blogs!) and this article (https://www.theguardian.com/society/2018/mar/10/panic-chronic-anxiety-burnout-doctors-breaking-point) really is relevant to all countries, not just the UK. But the fact that they do not have the time even when it is a dear friend, made me sad, for myself as a friend, myself as a patient and for them. Sad because it made me lose hope.

        Liked by 1 person

        1. I understand how you feel. None of my friends are doctors (yet) but I cannot even begin to come clean to them about what fibromyalgia really feels like to me. I am afraid I will come off as ridiculous, even though there is much more awareness for it now than when you were diagnosed. I get their inhibition in accepting a patient’s word sans the “physical proof” of any illness. Like you said, it’s a slippery slope for men/women who make a living out of science – where do you draw the line? These days there’s also what I would call “hyperawareness” around people seeking pain medication because of the opioid crisis in America, making it more difficult for chronic pain patients to get taken seriously and get adequate help for it. Are we in really that much pain or are we just looking to get high? (After years of taking many different kinds of pills, I wouldn’t actively seek out any of their side effects!) But the opioid crisis is real, and people with years of legitimate opiate use to manage their pain do form a dependency that is hard to shake off, so I understand the need to be more cautious with these medicines and be vigilant of sources through which Rx drugs end up on the market. So there are lots of reasons I feel, including the ones you pointed out. I have frequently wondered what sense it makes to overwork doctors such. Who would want a doctor to perform surgery on them who hasn’t slept in 3 days?!

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  4. I don’t say this because you are a friend, but I really mean it because I can see it. You are a multi-talented person, with a much broader range of interests and capabilities than many talented people I know closely whose expertise or interests are narrower. A cage is a cage, and I do not mean to trivialize anyone’s loss of freedom. But for a fast and gifted mind like yours, the sick body becomes a cage for an extremely wild and high flying bird – if you understand what I mean. And it is hard for you to let go of all those identities that come with all the talents you have. I am not that multi-faceted and feel that I let go of only a few things in losing my life as I knew it, compared to you. So don’t be too hard on yourself. Keep an eye on the edge. Take care :-*

    Liked by 1 person

    1. You are very, very, very sweet — and extremely intuitive, to read between the lines and understand yet another dimension of why FM goes beyond just feeling a bit achy and tired for me. I considered talking about the emotional burden in this post, but it was already so long, and the emotional health topic so complicated that I decided to leave that for another day. It has always been hard for me to let go; somehow I feel like *I* need to make choices for which *I* will be responsible, so if things don’t work out, I won’t ever have to go blaming anyone else for it (including any anthropomorphized version of Providence that invisibly steer us directions unknown to us). But I have been learning how to relax more, not trying to control all the strings I feel are in my hands (especially as my grip on many start to loosen). In many ways, I have been lucky. I am a more “mental” than “physical” person, and I can continue to engage in my intellectual pursuits even with a body that refuses to do my bidding. I imagine the cage feels much more restrictive for those who enjoy being more physically active than mentally active. I can only imagine how tight the cage must have felt for you — by all accounts, I think you must have made a wonderful doctor, and you struggled through so much to keep hold of that identity and excel in your profession. I feel sad that medicine does not allow one to reduce hours and stress and continue being a great doctor, and help people with more empathy and compassion, if anything, when the doctor’s own body is sick.

      Liked by 1 person

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