Tag: living with fibromyalgia

A Change in Medicine – Doubling Pregabalin

Bones

raphael-biscaldi-rE3kbKmLmhE-unsplash

During my visit to my doctor yesterday, he noted that I was also on Pregabalin, which reduces nerve pain … like trigeminal neuralgia.  As I’m having some fairly intense side effects from carbamazepine, he suggested we double the dose of pregabalin, which was relatively well tolerated, and subsequently reduce the dose of carbamazepine to one that is sufficient to keep the pain under relative control, but also reduces the side effects from it.

I began my doubled dose of pregabalin last night (300mg twice daily).  This morning I feel dizzy as anything but totally awesome.  I’m just lying here on the couch with my legs up on the back of the couch (a position I find most comfortable) and I am incredibly dizzy and also feeling quite euphoric.  I am definitely rambling.

I usually experience some fairly intense dizziness with pregabalin during the first 1-3 days, as well as some euphoria, and a good mood that continues on.  I know what to expect with it.  My hope is that the doubled pregabalin will allow me to reduce the tegretol from 400mg twice daily down to 200mg three times daily, or even lower!

But first, get through the dizziness and make sure the pregabalin is taking off that last bit of pain.  Then I can start adjusting.

Fatigue and Lethargy

Bones

jordan-whitt-EerxztHCjM8-unsplash

So as you probably all know by now (or, if you’re a transient blog surfer, you may not know – and also, hi!) I have fibromyalgia.  I am also being treated for trigeminal neuralgia.  Jury’s out on what’s causing that, I’ve got a referral so let’s see where that takes us.

Fibromyalgia unfortunately involves chronic fatigue.  Fatigue is defined as “extreme tiredness resulting from mental or physical exertion or illness” (thanks google dictionary), but for some reason I find that word too … lively.  It’s the ‘t’ and the shortness of the word.

I actually prefer the word lethargic, and it’s defined as “a lack of energy and enthusiasm”.  While it’s an accurate description, I do indeed have a lack of energy, it doesn’t take into account the severity of that lack.  But, still, I like that word, because you can elongate the ‘e’ and the ‘a’ and it becomes a long, slow, exhausted exhale of a word, bringing to mind a sloth on a branch moving in that incredibly slow way of theirs.  It sounds how I feel, although fatigue describes it.

I was going to do things today.  I got up, I had my cuppa coffee, I took my meds (I’ve doubled my morning tegretol, as the pain from my trigeminal nerve is increasing), and I had my brekkie.  I lay around for a bit, read a bit, and then realised I was having difficulty focusing on the words.  My eyelids drooped, so I sat up and started sorting out a mindless but fun computer game to play (shield bashy bashy, sword smashy smashy).  I was just starting up when everything slowed down.  My arms weighed down with lead, my shoulders dropped, and the fatigue hit me in the face like a two handed hammer.  Oof.  It’s hard work just typing this.

I’d been improving so much with my fibromyalgia and my balancing act that I haven’t felt like this in a wee while.  Anxious and depressed and like I don’t want to do anything, sure, but not this whole body-weight drained fatigue.  I actually suspect it’s a side effect of the tegretol – I’ve found myself less able to do things lately.  Or it could be the pain from the trigeminal neuralgia fatiguing me in a shorter length of time to what I’m used to.

Regardless, I’m now going to put my feet up, put something on Netflix, and doze for the rest of the day.  When the fatigue hits, you just gotta rest.

The ants go marching one by one …

Bones

vlad-tchompalov-dQkXoqQLn40-unsplash

The other day I had an interesting new symptom:  I had the sensation of ants crawling all over my skin.  Sometimes it was one ant skittering along my ribcage.  Other times it was an army traipsing down my legs, occasionally biting the skin there.

It lasted all evening, varying in intensity.  I knew it wasn’t real, knew in my brain in a way that is unshakeable, and so I waited it out.  I did not scratch the skin, that hurt.  I rubbed it occasionally, which provided some relief and did not cause pain, but I could only access some of the skin, as I was in (vaguely) polite company.

This sensation is called formication, a form of paresthesia, which is an abnormal dermal sensation with no apparent physical cause (thanks Wikipedia!).  It’s another side effect of fibromyalgia, which makes sense.  Nerves misfiring and all that.

But holy shit it was an unpleasant feeling!  The occasional biting fortunately stopped after a little while, and I had some relief about two hours into the sensation where it all settled down.  It came back but at a much reduced intensity after about thirty minutes, and eased up enough that I could sleep that night.

I haven’t experienced it before, nor since (admittedly, it’s only been a few days since, so who knows if this is a one off or a new thing?), and I hope never to.  Although if I had to pick between ants and pain … actually, I don’t know which one I’d pick!  They’re both awful!

I’ll enjoy my itching reprieve while I can.  Who knows if it’s going to come back!

I don’t want the life I lead … or the life I’m heading into

Bones

johannes-plenio-hvrpOmuMrAI-unsplash

I sat on a foot stool in Spotlight, exhausted and in a not inconsiderable amount of pain, waiting for my mother to extricate herself from the yarn department.  I had bought two balls of lovely soft cotton and was contemplating what to do with them when my thoughts moved to when I would be able to do anything with them.

You see I have this week off, then a week of work experience, then I’m back at uni, which just sort of continues until December of next year as we go straight from this year into our final year, do not pass go, do not collect $100.  I have very limited time to do things that I enjoy, and usually by the time I get to them, I’m too exhausted to do them.  I don’t like this life that I lead.

But I’m sucking it up and doing it because it will get me into a career I am infinitely passionate about and absolutely what I should be doing with my life.  Unfortunately it’s also a career where overtime and overwork is just par for the course and rather expected of you.  Especially in our final year of university.  We’re not ’employees’, so there is no legislation preventing them from requiring us to be in clinic from 7am to 7pm, or later, or from going straight from that to an overnight shift.

I really don’t like the life I’m headed into.

But like all things, there’s the ability to mould that life into something you want.  In my case, being stern about in clinic hours and my own requirements, and ensuring that I will not be failed on the basis of only being able to be in clinic for reasonable hours.  And after university is finished, setting up alternative income streams (I almost feel gross saying those three words, they sound so … smarmy and corporatey) so that I can work part time, and find a place that will allow me to work part time.

It was a sad realisation, though, in that shop.  It’s the career I’ve worked most of my life towards, and my own body is making it so much more difficult than it needs to be.  My body is preventing me from doing what I want to do to the fullness I want to do it, and I’ve had to seriously adjust what I want to do to compensate that.

It seriously sucks.

So I’m going to allow myself to be a sad sack of potatoes about it for a little while, then grab myself a cuppa tea and start plotting an easier future.  My life won’t give me exactly what I want, so I will make a suitable compromise – one where I can still pursue the career I want, without exhausting myself to the point where I can’t do the other things I want to do.