The Reality of Fibromyalgia

Bones

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I’ve had a fairly packed few weeks, and I’m looking at a full schedule until … probably mid February.  My anxiety is considerably higher than normal, as there’s a lot to get done over the next few weeks.  I’m physically doing considerably more and resting less.  This has a lot of consequences for me.

First being that my fibro is flaring up.  Which, yeah, go figure.  It means random parts of my body hurt.  On Friday, the middle knuckle on my right hand hurt.  Yesterday, an old injury on my left foot started hurting (and still does).  Bits of my leg hurt, and then stop hurting at random.  My knees ache more, my right elbow started hurting … you get the picture.

Today I experienced a new symptom.  I had a shower, which was all well and good.  I was drying myself off when I felt pain running down my left arm.  I quickly turned my arm over.  It was a water droplet running down my arm.

I felt some not inconsiderable pain from a water droplet.

I briefly panicked and then bottled it up.  I didn’t have the time to panic about it, so I didn’t.  It’s only now, in the later hours, that I’m sitting down to process this new facet.

Pain from a water droplet.

I’m used to abnormal pain after an injury, or additional pain after physical exertion, but this is new.  This is normal sensory input being processed as pain.  This is something I cannot excuse away as ‘a bit rough’ or ‘a bit sharp’, it’s a water droplet.

Realistically I’ve experienced this before.  Sometimes when my amazing human rubs my head or my arm, it hurts.  I’ve had days where pillows hurt to lie on.  But I have always rationalised them away – my amazing human was being unintentionally rough, or his nails were too long, and I just had a really bad headache so I was sensitive.

This is the first experience I can’t rationalise away.  This is clear proof that I have an issue with sensory input, where either my nerves are sending the wrong signals, or my brain is interpreting the signals wrong.

Today it really hit me.  I’m still not sure what to do with this information.  I’m probably going to bury it for a while and bring it out to examine at inopportune times (such as during an exam, or when I’m trying to read).  But for now, honestly?  I’m scared.  This is scary.  And I really don’t like it.

Post-Holiday Blues

Bones

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I had a week long holiday from my normal life.  I spent a week with friends and family, cuddling with my dog, and doing work experience in the field I will eventually be graduating in.

I loved it.  For one of the few times this year, I felt alive.  My brain was whirring, I was thinking, I was in my element.  I was putting two and two together and getting four, and then adding another three to get seven, that kind of thing.  Despite the aches, the exhaustion, and the trembling, I had more energy than I had had in months.  And I proved to myself that I understood some things, that I remembered some things, and that I could actually apply a lot of what I’ve been taught.  It was exhilarating.  By the end of the week, though, I was gasping to be back in my home, in my own space, in my own bed, with my home routines.

I got home and it was lovely, my lovely human was there, my animals cuddled into me, and we had a relaxing day, before I went back to work and the reality of what I did fell on my head.

I like the people I work with.  I like the place I work.  I’m good at what I do, but wow is the work soul suckingly boring.  These last two weeks have thrown my life into light.

Do what you love.  Not because you’ll never work a day in your life – you will, it will still be work.  But do what you love because life is too short to do what you don’t love.

Take Your Meds

Bones

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I’ve had a couple of seriously stupid days.  I’m laughing about it, because nothing bad really happened, but it could have.

I have alarms I’ve set on my phone with comical noises as a reminder to take my fluoxetine in the morning, and my amitriptyline in the evening.  I would forget my own head if it wasn’t screwed on, so this is a sensible precaution.

Except when it goes off and I don’t immediately take my medication, and then I forget about it.  Like I did yesterday morning.  And yesterday evening.  And this morning.

It was only when I was lying in bed wondering why I was in so much pain and also not trembling that I realised whoops, I hadn’t taken my amitrip the night before!  It wasn’t until 9.30am that I realised I’d forgotten to take my fluoxetine that morning, and it was through a process of thinking ‘now these symptoms are a bit severe for missing one dose, I don’t usually feel this bad when I wake up late’ that I realised I’d also forgotten my fluoxetine the morning before.

The good thing is I can now say with certainty that the amitriptyline really helps.  The bad thing is I now know that I ignore my alarm!  So, on the suggestion of a friend, I got the app called ‘Medisafe’.  This post isn’t sponsored in any way, shape, or form, I just genuinely think it’s a neat app.  You plug in the medication, you select the dosage, and then you select the external presentation of your particular medication (because they vary considerably).  You tell it when you take it, how many you take, and what you take it for, and it then proceeds to piss you right off when you need to take it.  You have to go in and say you took it (which I will only ever do once I’ve actually taken my medication), so hopefully I won’t have any really daft days like the last couple.

Like I say, I’m laughing and making light out of it, but if I hadn’t run home at morning tea and taken my fluoxetine, it probably would have been a different story.  Moral of the story:  take your meds!

The Diagnosis

Bones

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The bloods all came back clean, so for all intents I have been diagnosed with fibromyalgia.

I don’t know what I’m feeling right now.  It hasn’t begun to sink in, I think.  It’s just a word.  Life goes on as it always does.

Fibromyalgia is more than a word.  It’s a name for what has been plaguing me for years.  It’s a set of symptoms that can be linked back to a thing with a name, a thing that exists, a thing that’s not just in my head.

There’s a certain amount of relief in that.

There’s also the realisation that this is a thing and it’s not just in my head.  This is a thing.  It exists, it’s real, and it means I can’t just harden the fuck up and plow on through, or stop being lazy.  It exists, and it has an impact on my body and on my life, and I must now change my life to take that into consideration.  I can’t keep on going as I have done.

I’m also realising just how little support there is in the public health system for people experiencing chronic pain.  Where I live there is nothing.  Which is mildly problematic, but optimistically speaking I only have another 2 or so years here, and then we can move.  I’m already eyeballing areas that have public health chronic pain clinics, which are fortunately in areas we are interested in moving to.

For now I guess it’s just truck on as usual and deal with the doom and gloom when it all catches up with me.  But at least I have an answer now.  It’s not all in my head.

The Aches And Shakes

Bones

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The last few weeks have been interesting to say the least.

I appear to have developed an essential tremor in all of its forms – internal, kinetic, and postural.  I am in fact off work today with the aches and shakes!

It seems to mostly appear when I have ‘done too much’ – typically beginning lightly on Thursday and coming in a bit more solidly on Friday, and then slowly receding over a weekend of rest.  This weekend just past wasn’t particularly restful, so I was shaking myself to pieces yesterday at work.

This morning I had the ‘roaming aches’, where one joint would feel incredibly painful, then that would go away, and another would start feeling incredibly painful.  On top of that, I have my usual overly exhausted body aches in my hips, lower back, all down my legs, and around my shoulders and neck.  Fortunately I’ve got my physio appointment today, so that should ameliorate at least some of those aches.

So I’m not entirely sure if the shakes relate directly to the fibro, or more to the amitriptyline, as postural tremors are associated with both.  Although I notice mine most as a kinetic tremor, I lose my fine motor skills, and simple tasks like leafing through paper or putting a paperclip on are surprisingly challenging.

I’ll raise this with my doctor on Thursday, who will hopefully have all the blood results back by then, and I can get a properly tentative answer as to what this all is.  In the meantime, it’s nap time.