Tag: chronic pain

Double the Pregabalin

Bones

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I started taking pregabalin on the evening of my last day of work last year.  I did this specifically because we had a very busy period in the lead up to Christmas, and I did not want to be in any kind of vaguely altered state during this mad rush.

As it turns out, it was a good idea, as I experienced some fairly hefty dizziness during my first few days on pregabalin.  I was on the lowest therapeutic dose, 75mg twice daily.  My doctor advised that we had room to quadruple my dose, depending on how I responded, and we were

The week before last I had my first week of work experience, and so my first week of doing stuff, while on pregabalin.  75mg twice daily did not quite cut the mustard, and I found myself in quite a bit of pain by day two.  I also found myself with absolutely no energy by the end of each day, making it home as a zombie and crawling onto the couch to put my feet up.

Last weekend I doubled my dose.  This time the first couple of days involved some decent dizziness – nowhere near as dizzy as starting pregabalin, but definitely bad enough that I wasn’t keen to drive, but by the third day I was able to get around confidently.

It was immediately apparent that I had an increase in energy levels.  I have been able to do more during my days without exhaustion setting in.  On Thursday, I was up and moving / working / cleaning from 7am until 9.30pm, and while I was exhausted on Friday, I was no where near as achy and dead as I normally would have been.

I also have a much greater sense of peace and contentment.  Fluoxetine has worked very well for taking the edge of my anxiety and depression.  My resting heart rate gleefully sat at around 80-90, while my standing up and moving around heart rate would range from 95-115.  My heart rate, even lying down, would very rarely dip below 80.  My sleeping heart rate would be 50-60.  For me, these are pretty good values.  Before this I would usually have a resting heart rate somewhere in the 90s.

On amitrip (with fluoxetine), I’d have similar values, except for Tachycardia Monday, where my heart rate would consistently be over 100 (sometimes as high as 125) until about midday, and then it would go back to normal.

On 75mg twice daily pregabalin (with fluoxetine), I had fairly similar values as to fluoxetine only.  On 150mg twice daily pregabalin, my heart rate very rarely goes above 100 (even when I’m standing up and moving around) and typically sits around the 70s when I’m sitting and the 90s when I’m moving.  Sometimes it even goes as low as the 60s when I’m lying around!  Since beginning to wear my Apple Watch (specifically for this reason) almost a year ago, I have not recorded values as good as this.

So not only is there a clear physiological effect of lowering my heart rate (I suspect by some cool actions on my central nervous system), it also has the effect of relaxing me mentally, and giving me a sense of calm, contentment, and relaxed energy I have only really experienced when on a really good holiday.

I am hopeful that this continues for the long term and it’s not just my brain getting used to the increased amount of pregabalin.  If it does, I may have my life back!

Growing up with Chronic Pain

Bones

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As I have gained more information about fibromyalgia, I have come to the conclusion that I have most likely had this condition for well over half of my life.  Looking back on my memories, particularly of my early twenties, brings a lot of things into focus.

I was 13 when Harry Potter and the Goblet of Fire was released.  It was released during school holidays.  The family was having a rare shopping day at the local mall – we hadn’t pre-ordered the book (which I was kicking myself for, because I wanted it now), but we bumped into a friend who said the book shop around the corner still had a couple hundred copies, so we ran around the corner and bought one.

When we got home, I began to devour it.  I can’t remember how long it took me to read it, but I do remember lying in bed to read the last bit.  When I had finished the last page, I shut the book, set it to one side, and closed my eyes.  I was woken later to dinner, but didn’t want any – I was feeling quite unwell.  It was maybe a few hours later when I heard Mum talking about calling the neighbour to come over and look at me, as she was a nurse.  Said nurse came over and did a quick once over.  I was then rushed to hospital with suspected meningitis.

I remember the spinal tap.  The nurses were amazing, one of them asked me to tell him about my favourite thing in the world, so I rambled incoherently about Dragon Ball Z.  I don’t remember much else, just bits of being at home, Dad carefully sponging my face down with cold water, and everything hurting.  Especially my head – no pillow was soft enough.  I lost a week in this state.

When I finally came to, I had a two week recovery ahead of me before I began school again, part time.  It was around this time Mum said I began to lie in bed complaining of sore legs.  I remember them aching, throbbing, as I walked myself to and from school (uphill both ways – literally!) with my backpack that ranged between 4 to 15kg.  We went to a podiatrist and bought special inserts for my shoes.  It helped a bit, but still my hips burned.

I took up a part time cleaning job at 15 and regularly wondered why my knees and hips were on fire.  I had heart palpitations to the point where I had a mobile ECG put on for a monitoring period – they didn’t catch any and the doctor condescendingly said we can put you in touch with the psychiatrist.  I said I’d call them later to book a time and never did.

I took horse riding lessons for a few months.  Mum picked me up one day and I said I was sore and didn’t feel well enough to ride.  She drove me all the way out there and told me to get out and ride.  It was only after twenty minutes of crying in the car park that she took me home.

My time through my early twenties, which coincided with my time with It and Thing, was characterised by severe stress and so much pain.  My knees became so painful walking was excruciating.  My lower back was always throbbing, and random parts of my body would just start hurting for no reason.  My right thumb hurt so badly I wouldn’t move it for about three months straight – I went to the doctor and he said “well of course it hurts, you’re always poking it” and that was that.  I’d have to strap fingers together when the knuckles would flare up.

I just started wearing running sneakers with proper support to work, and that enabled me to get around better, although my knees were still incredibly painful.

Then my abdomen began hurting very badly.  It went on for months before I decided I needed to get this looked into, so I went to a doctor who sent me off for ultrasounds.  The ultrasounds came back clear and nothing else was done about it.  Everything still hurt.

I’m lucky, in a way.  I grew up with this pain.  I wasn’t allowed to do anything to alleviate it.  If I was lying in bed complaining about my legs hurting, it was just growing pains, or it was because I wasn’t active enough.  Later, when I raised problems with medical professionals under my own steam, I was told it’s all in my head, or there’s nothing wrong with me so it can’t hurt.  I was never allowed to not do something because of the pain.

So now, in my early thirties, I still do things despite the pain.  I’m not as afraid of triggering it as other people are, because I have had it most of my life.  I barely remember a time when I was not in pain.  I mean, I remember being a very active child – I excelled in martial arts and climbing trees and running and jumping and doing all the things, but it’s too abstract for me to be able to apply it to myself, for me to be able to look at it and go ‘damn I miss those days’, because I don’t remember them well enough.

I’m also really glad to have a diagnosis and to finally be medicated for it, because holy shit does it make a huge difference now.

Pregabalin – Day Two

Bones

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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

Bones

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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!

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.