Fibromyalgia and Insomnia

For the last … I don’t know how many weeks, to be honest, I have had insomnia. This is unusual for me – I’m a good sleeper, I have good sleep hygiene around bedtime, and I usually sleep through the night.

Lately I’ve been waking up between 1am and 3am, unable to return to sleep. I lie in bed where every point of contact aches, from my head resting on the pillow to my heels against the mattress. So I get up, I make myself some kava, and I try to get back to sleep on the couch. Most days I succeed. Some days I don’t.

It’s tiring, and what’s worse is it simply increases the pain I experience. Less rest results in more pain results in less rest results in more pain … you see where I’m going here. It’s a vicious cycle of craptastic proportions.

I know fibromyalgia is a condition that can affect sleep. It disrupts brain waves, particularly during slow wave sleep, which is the deepest sleep. Due to this, fibromyalgia patients will often feel unrested, despite having a full night of sleep.

On one hand, I absolutely experience that. I use a sleep tracker and an apple watch to monitor my sleep patterns and heart rate, and I can confirm that I slam straight down into deep sleep for about an hour, and then dive up and down like a yoyo until I eventually wake up, whether that’s at 1am or 7am.

I take kava in small doses to help with my fibromyalgia pain, and in slightly larger doses at night to help me rest. I’ve also been taking 4mg of melatonin, a supplement I am just about to run a trial without. In theory I should be getting some pretty decent sleep. Like I said before, I have good sleep hygiene around bedtime, I make sure I go to bed early so there’s more time for me to relax and fall asleep naturally, I remove screens, and I have conditioned myself to fall asleep to specific podcasts.

But it’s not the falling asleep that’s the problem, it’s the staying asleep.

I suspect a lot of it is down to my levels of pain, which sort of makes sense but at the same time doesn’t, as fibromyalgia pain typically does not and has not interfered with my sleep historically. I seem to recall reading somewhere that fibromyalgia pain technically ceases during sleep. So it is likely that it is something else waking me and keeping me awake, and the pain is just there.

I’ve booked another appointment with my doctor for next week, and if I’m still struggling with my sleep then, I’ll ask him to sort me out something, or send me off for sleep research.

Still, it’s a puzzle, and it’s frustrating. I’m constantly tired but wired, having to take naps during the day to get through. I avoid having naps in the afternoons now just to try and help me get to sleep, but if I don’t get a nap in the morning I really struggle to get through the day. And it’s not the naps, as I’ve been known to have a 3 hour nap in the morning, another in the afternoon, and then sleep solidly from 9pm to 7am the next morning for months on end.

Blegh. Has anyone else experienced similar insomnia with fibromyalgia? Did you ever get answers? I’d love to hear from you.

Workplace Bullying

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Specific words and responses in the past week have led me to understand that I am currently the target of an active bullying campaign from a colleague, and have been since I joined.

From the very beginning she made it clear through her body language, dismissive attitude, word usage and tone of voice that I am Not Welcome and she Does Not Like Me.  Which is fine, I’m quite happy to leave her be and do my own thing and not unnecessarily interact with her so she doesn’t get annoyed and I don’t get snapped at.  This is a simple solution.  I know I’m not everyone’s cuppa tea and I’m happy to leave people be.

Last week she commented in a meeting to the effect of “you’re not doing your job”, a comment she never would have made had she not been confident she would be backed up.  And, unsurprisingly, she was – three of my other colleagues jumped in with very pointed comments on the topic at hand directed solely at me, in a manner that made me feel very attacked (although I didn’t quite understand until after the fact).  She was elated after that display.  Positively beaming.  It made me realise a few things.

First, that I wasn’t going to let this slide.  Passive bullying, being an ass to me directly, not a problem.  I can just avoid that person and we’ll all go on our happy way, but this was active.  She was seeking people out and telling them I wasn’t able to do my job.  She was cultivating this belief in my incompetence among other colleagues.  No, this I will not tolerate.

Secondly, just how much the stress of bullying has affected my mental and physical health!

I’ve always had a peculiar disconnect between my mind and my body.  Prior to a few years ago, I just didn’t think, I didn’t contemplate, I didn’t look within and analyse my own thoughts, feelings, or behaviours.  I just did, and bottled it all up.  Super healthy, right?

Now I take the time to figure out what my body and mind are telling me, and everything is ringing stress bells.  My gastrointestinal tract became deeply upset.  My mind couldn’t settle.  I was restless and antsy.  My heart rate was high.  I had difficulties getting to sleep, maintaining a restful sleep, and staying asleep.  I genuinely did not think I would be this affected by bullying in the workplace, and yet here I am, my anxiety still twisting in my gut.

I’ve lodged a complaint, and I’ll pursue this.  I think I’ll let the higher ups handle it – I don’t think it will be good for my health to interact with her myself in any way, especially as I am very confident she will simply gaslight me and I will end up getting nowhere.  I’m only there for a couple more months, and if I really need to, I will leave.  Although that’d have to be pretty dire for me to leave, I often have a hard time doing what’s best for myself when it comes to work.

But I’ve got to look after my health first.

Amitriptyline – Two Weeks In

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I have now been on amitriptyline for two weeks.  Well, I will take my 14th pill tonight.  It hasn’t been quite the upheaval that beginning fluoxetine was, but it has been an interesting time.

I’m on amitriptyline while my doctor is awaiting my blood results to rule out other things that can cause fatigue and muscle pain in a similar manner to fibromyalgia.  It’s used to treat both nerve pain and to improve sleep – sleep being one of the more important factors in determining your ambient pain levels during the day.  It succeeded on both counts!  With some … interesting effects.

The first morning after I began taking amitrip it felt like all my muscles were limp noodles.  Walking was an interesting experience.  My hips swung wide and I caught myself on my dresser, on door frames, on couches …  and it was hard just getting my toast from the plate to my mouth.  Nothing quite wanted to cooperate.

I felt a little spaced out.  Not as much of a space cadet as fluoxetine, fortunately.  I didn’t feel like I was permanently lightly high.  I just felt … lighter.  The physical effects of amitrip definitely contributed to the overall light feeling.  I also slept really well.  For the first week at least.

The second week was a bit rougher.  My sleep became more interrupted.  It was harder to fall asleep on the couch at 8.  It didn’t help that I had a lot more commitments in the evening that week, so I wasn’t able to relax for a bit before dozing off.  I started to feel flat, like I wanted to do nothing and be an amorphous blob again.  I began having difficulties concentrating, my words jumbled up.  I felt sluggish.  My body felt heavy, I was sore.  I still had limp noodle muscles first thing in the morning.

Last night (for reasons I’ll blog about later) I had one of the best sleeps I’ve had in a long while and I am now out of a state of pure exhaustion and into a place of just normal tiredness.  The sluggishness, difficulties concentrating, and issues with words were mainly a result of the fact that I was utterly knackered.  Getting some seriously good sleep took that extreme edge off, leaving me with a more normal tiredness I know how to deal with.

The amitrip still makes my muscles noodles, and it’s lovely, because when I wake up in the morning I am not stiff and in pain.  It leaves me a bit wobbly for a few hours, but that is getting better with the exercises my physio has given me for stability.  I am also definitely sleeping better, although not as well as I did during the first week.  I still wake up during the night, just not as frequently.  I also really notice when I have and haven’t slept well the night before – I notice a huge increase in ambient pain levels through my hips and legs and up my back when I’ve slept poorly.  The amitrip only does so much for the pain.

All in all, it’s been an okay couple of weeks.  I’m hoping things continue to improve now that I’m getting better sleep, and the sluggishness goes away the better rested I get.

When You’re Tired – Rest

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I have been a mix of not quite exhausted but very tired this last week, with a mixture of no particular reason and plenty of good reason.

Earlier this week my heart ran a marathon without me, leaving me at first puzzled, then panicked, resulting in an 8 hour stay in the emergency ward and the trauma of an attempted catheterisation.  Fortunately we all concluded that the likely reason for this was the amitriptyline, and I haven’t experienced tachycardia like that since.

It’s phenomenal just how much that utterly wipes you out.  I went straight back into work the next day, so I didn’t take the time to rest and recover.  Work has been quiet the last couple of months (which has been amazing), however we’ve just started picking up in the last week.  There was a seminar that has produced even more leads, so now we’re well and truly under the pump.  Things really kick off when it gets to spring.  Which is good, but also not so good.  I stay busy and I don’t get bored, but I expend a lot more energy during work hours and so need to rest more in the evenings and weekends.

Which is exactly what I’ve been doing.  I’ve been doing as little as humanly possible after work and feeding the menagerie, which basically involves lying on the couch and being sat on by a cat until I fall asleep.  I have to say, it does feel like the amitriptyline is helping – I’m able to get to sleep a lot quicker, and it feels less interrupted.  I still wake up to shuffle when I’m having a flare up and I’m uncomfortable, but I wake up less during the night overall.

It’s important to listen to your body and do what it’s telling you to do.  Right now it’s saying ‘rest, rest, relax’, so that’s exactly what I’m going to do for as long as that’s what my body is saying.

Adding Amitiptyline

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Yesterday my doctor undertook the ‘prod test’ for fibromyalgia.  I reacted to some of the control points (I’m not surprised, my muscles are always tight) and really reacted to enough of the fibro points that he’s sent me off for bloods to rule anything else out.

There’s one point, 2cm caudal to the femoral trochanter that he only had to brush against and I was howling.  The other side, he didn’t so much find it because he knew where it was but because I would start yelping when he got there.

The upside is he’s given me amitriptyline, which has been identified as better than placebo in some trials with regard to fibromyalgia pain.  I’m now on fluoxetine in the morning, and amitriptyline in the evening.  Because they interact, I have to be careful of serotonin syndrome, which is a very serious problem involving too much serotonin.  Fortunately I am almost always around someone who knows what I’m taking, which is so important while my body gets used to the new balance.

So far it’s made me very sleepy in the evening, which is great, because sleep was one of the big problems I have been having.  Fluoxetine is a stimulant and has really taken my easy sleeping days and turned them upside down.  Add the discomfort from fibromyalgia and you’ve got me waking up 5-6 times a night, and that does not make for a happy bunny in the morning.

In the mornings, however, moving is hard.  My muscles don’t quite want to work.  They’d much rather remain in a relaxed state.  My legs wish to retain their noodly ways.  My balance is a little off.  My brain is sluggish and prone to going completely blank.  My reaction times feel a bit slower.  It’s similar to how I felt when I first started fluoxetine, just quite a bit less severe, so I’m interested to see how this progresses.

I had my blood taken today for testing, which is never a fun experience.  I’m very not okay about needles.  They always hurt, the sensation makes me want to jump out of my skin, and I’ll occasionally faint.  Today was no different, although hooray, there was no fainting.  I warned them I’m a sometimes fainter and sometimes puker, and they were very good about putting me on a bed and using the tiniest needle, and keeping me talking all throughout to distract me.  It still hurt quite badly, I still went very fuzzy (and would have fainted if I hadn’t been horizontal), and the site is still incredibly tender.  Because my body has realised it’s been ‘injured’, the rest of the elbow has also flared up and become somewhat painful.  The joys of being tender, I suppose.

Now I just sit tight and wait for a few weeks.  I’ll hopefully know whether or not I likely have fibro by about this time next month.  In the meantime, I get to adjust to amitriptyline!