Pregabalin – Day Two


My doctor has prescribed pregabalin for my fibromyalgia, at a low dose, for two months.  I waited until work was wrapped up for the hear, as side effects include dizziness and general space-cadet-ness, which wouldn’t be ideal for the last week of work.

I took my first dose of pregabalin on two nights ago.  I curled up in my favourite chair and knitted for a bit.  I found myself nodding off fairly promptly, so took myself off to bed and slept.  I woke up early.

That day I was dizzy and had visual disturbances – rather like the frame rate for my eyes wasn’t quite fast enough.  It was peculiar, to say the least, so I didn’t drive anywhere.  I felt drowsy all day and a wee bit spacey.

The second day, being today, was a lot better.  No dizziness and no frame rate peculiarities.  My pain levels have considerably decreased, but I’m not sure if that’s because I’m on holiday and so I’m pottering about more (because I don’t have to lie and rest for work), or if it’s already beginning to work.

So far it has been the least offensive drug I have ever begun to take.  There doesn’t seem to be any mental disturbances, and I don’t feel particularly spacey or dizzy anymore.  So far I’m impressed and vaguely optimistic this may work.

Amitriptyline – That’s a No Go From Me


I’ve been on 10mg Amitriptyline every evening (along with 20mg fluoxetine every morning), and it has finally settled in enough for me to say, no, this is not working.

It’s one of the more difficult things to do, stop and admit to yourself that this medication that should be helping you (and oh god don’t you wish it was) actually isn’t.  I mean, it sort of is, and sort of isn’t, but the positives are outweighed by the negatives.  Then you have to go back to your doctor and say ‘this isn’t working’ and they pry for reasons why and sometimes it’s hard to put the reasons into words.

Fortunately for me, it wasn’t.  My negative side effects included, but were not limited to:

  • Tachycardia Monday (I wish it was on Tuesday because that would have sounded cooler) – where my heart rate was consistently 100-130bpm for the majority of the morning, every Monday.
  • Consistently higher heart rates across all activities.
  • Intention tremors when I’m tired.
  • Increased anxiety and depression.
  • Increased headaches and visual disturbances.

So I told my doctor and he suggested we halve my dose (I’m already on the lowest dose tablet) and re-visit in a few weeks when he’s had an opportunity to read up on what else might treat fibromyalgia.  I’m pushing fairly hard to try a different medication.

I’ve been on 5mg Amitriptyline for the last week and the change is huge.  I feel excited about things again, I’m happier, more relaxed, and generally more positive.  I don’t have tremors anymore, woohoo!  Everything’s coming up Milhouse!

Except with the lower dose of medication that was managing my pain, I’m now in more pain, which I’m not quite so keen on.  My arms, which haven’t ambiently ached (for no reason) since starting on amitrip are flaring up again.  Usually the aches are confined to my hips, thighs, and lower back.  I’m having random spots on my skin where touch there is excruciating – something as simple as a cable brushing against my arm feels like a fire brand.  Sometimes where I like to sit the sleeves of my cardigan is overly sensitive.  I haven’t been able to wear my watch because it’s been too painful.

You win some, you lose some.  At this point I’d rather this level of pain than trembling so hard I can’t even do up a button.  When I see my doctor next I’ll be pushing for a new script to try, and for a referral to the frightfully expensive (private) pain management specialist he mentioned.  It’s time to get this ball rolling faster!

Take Your Meds


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


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


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.