Tuesday, 5 March 2013

Wide Eyed Stupid

Wide Eyed Stupid - someone doing something incredibly daft.

(Nerd points for me - I finally worked Malazan into a post title.)

So today I thought I would talk about some of the peripheral effects of Fibromyalgia. Most people are aware of the pain, tenderness and general fatigue. As I found out slowly over time there are actually a lot of other symptoms and oddities associated with the condition. These are just the ones that cause me problems – they’re by no means the full story.

The title? Well, the peripheral symptoms do just about amount to the body (or more specifically the brain) doing incredibly daft things. A nerdy reference which manages to be fitting too? Fancy that. 

This was probably the hardest post to write so far in this blog, as even though I know this all happens on an almost daily basis to me at some point or another, it still reads as if I might be going slightly bonkers. I bit the bullet and got it all down though, if only in the hope it shows other people they're not going crazy, these are genuine symptoms and it's all really happening. 

Brain Fog

I’ve covered this in my previous post here . It’s not enjoyable and can be frightening, but I always try to laugh afterwards. There is something more than a little amusing about picking up your car keys and forgetting what they’re for. Somewhat funnier is when the example in question is my car keys and they’re attached to a moving bright yellow model of Bumblebee the Transformer. You’d think they’d be easy to recall wouldn’t you?

An addition I forgot to mention in my previous post on the Fog - does anybody else struggle with mixing up or just plain being unable to remember simple words? This actually upsets me a lot, and has driven me to stop talking in company until I calm down again on occasion. As someone highly intelligent with a love of vocabulary and the English language I find this to probably be the most distressing cognitive issue I face. I'd take forgetting what the keys are for over this any day given the choice.


One problem on the increase in recent months for me is sound sensitivity – my passing inability to filter out irrelevant noise is starting to get noticeably worse. This is most apparent with frankly the oddest of things. My partner was watching Peep Show on Youtube the other night in the study whilst I was on my computer (opposite side of a smallish room) and every time a new character started talking it physically made me jump, even though I could hear every word said in the mean time. Any change in volume caused a rattling-around-inside sensation all over me. Not cool, body. I do find I often have to ask the partner to turn things down if it gets a bit too much.

This rattling about sensation is the best way I can describe my usual reaction with sound sensitivity. I don’t actually think it’s to do with volume most of the time – it’s the pitch and tone of a sound. I know it’s not volume because I’m fine at loud heavy metal gigs (with earplugs*, that is) Some voices are fine at any volume – others irritate straight away. The “rattling about” is swiftly followed by the muscles of my neck and shoulders tightening up (something akin to coiling a spring, or that’s how I visualise the sensation) and the sound becomes more and more of a problem the longer I can hear it. 

As you can imagine, the tightening up is painful, and the longer it goes on the more painful it becomes. It feels almost as if “fight or flight” has gone into overdrive and you're constantly waiting for something to react to, even though you aren’t consciously trying to do so. I suppose this is to do with the lack of filtering I mentioned. Frankly, it’s a bit tiring.

Oh, and a sudden noise I’m not expecting? Think the same process about one hundred times as fast. Ick.

One theory I have kept an eye on in recent months has been the theory of Central Sensitisation. It’s shown rather neatly in this diagram below:

(I found this on Tumblr without a source. If anyone knows where it comes from, please let me know and I'll add it in!)

If we follow the idea of areas of the brain being overly “switched on” and constantly trying to assimilate and process information, then all those sensory overload problems start to make a kind of sense.  Or at least in my head it makes a sort of sense. 


Smells are funny.  When I’m in pain I constantly pick up a pervasive “wrong” smell. I don’t know what it is – I doubt it’s anything in actual proximity to me and probably just a bodily reaction – but still, it’s an oddity. Given we’re currently drying out our bathroom and half the kitchen from a bathroom leak, it’s hard to tell what’s the damp and what’s the funny pain smell. 

Dizziness/poor balance

My general clumsiness and ability to overbalance at the slightest provocation have never really been in question (graceful or elegant, I am not!) but it’s certainly something I’ve noticed worsen with the Fibromyalgia. The best description I can give is to compare it to almost constantly *just* overdoing it – so being that tiny bit over balanced or stopping a tiny bit too late. It really is a very small measure of mistake, but it’s happening most of the time. I await general chaos and hilarity when I strap on the high heels for the wedding of some friends this weekend.  The shoes are pretty – see, I have my defence of possible broken ankles all set already.

Blank moments

I’m unsure if these little blips are a part of the Fog or not. It’s like staring into middle distance all of a sudden waiting for your brain to kick back in. I’ve no control over them, they’re a little bit frightening and they seem to come paired with the onset of all over sensations of “heavy” limbs and increased aching. It hurts, it’s not pleasant and I have an utter inability to do anything until it passes – except sit down as fast as possible as I tend to go dizzy as well. I've baffled two consultants with this so far, so I’m looking for my hat trick!

Bowel habits

I'll admit to this being a somewhat sketchy inclusion. I'm currently back to diarising food and bowel habits again and I'm waiting to find work again so I can pay for some specific food testings which were recommended to me some time back (if anyone wants the link to have a look at, let me know and I'll find it for you). I'm aware Fibromyalgia can disrupt bowel behaviour and it's tempting to put it down to that, but something doesn't quite sit. My old Gastro consultant pretty much dismissed the idea of IBS - and I'm still pretty convinced he was correct, I don't seem to fit the pattern. However, it's something I think needs to be looked into further. Does anybody suffer with bowel changes and wouldn't mind telling me a bit about them? It'd be interesting to see if it correlates in any way. 

I'm aware Fibro can affect bladder function to, but given that I was diagnosed with IC I think my issues stem from there.

So yes, that's some of my little oddities. Does anybody else suffer from these, or different ones?

*The earplugs I have are ER20s, They are relatively inexpensive on Amazon and I can't recommend them highly enough


  1. *nerd high-five for the title*

    These extra bits are a big problem for people trying to understand us. We say we have Fibromyalgia, AKA chronic pain syndrome, and people go "Ahhh, that explains the pain" but when you try and say everything you're going through is tied to this one condition they can get confused or dismissive.

    The Fog is evil, and one of the most distressing things for me. I've been an avid reader since I was tiny, and now can't hold my concentration to finish a book a day anymore. I find myself stumbling over my words horribly- I know the word, and I know I know the word, but translating that knowledge to speaking ain't happening right now, abort reboot retry. It's also one of the big reasons for me dropping out of uni- in exam situations, I get stressed, which makes me fumble my equations more than usual, which makes me more stressed and repeat ad infinitum.

    I know the balance issue too. I used to do martial arts amongst other things, so my balance is pretty good. Except when I suddenly move *just* too far in the wrong way and almost fall over. At least I'm able to recover quickly most of the time due to said other activities and usually avoid the point of face meeting floor ^^'

    Smells I don't have a problem with at the moment. Sounds effect me to a lesser extent, but I can understand where you're coming from.

    Blank moments are a funny one. I do find myself staring into the middle distance and find it difficult to refocus and get back to the Real World (TM). The main way it effects me, though, is in my sense of time. IE, I have none. Look at clock, it's 11am, go grab a cuppa and finish it, check clock and it's half past 3...say what now?

    Bowel habits...if you want a natter about them, I'd suggest finding me on FB so we can PM about it- not going to go into detail here, that's a bit mean.

    Lessee, other things I get with my Fibro...

    Going out is now much more tiring than it used to be, mostly the social side too. Being social with people is incredibly taxing, and by gods do I feel it in my bones by the time I get home.

    My memory is now much more ditzy, and I rely on my diary. This is probably an extension of the Fog, but it still sucks. I once memorised 200 decimal places of pi in a week for a dare, now I get the times of my hospital appointments mixed up and forget the names of characters I've adored for years. Blargh.

    My sleep pattern was well and truly fubar'd, and is now medicated so that I don't actually wake up with every tiny little creak in the house or with every toss and turn I make.

    Relevant to women primarily, I can no longer wear underwired bras as they hurt too much. Boy does that make buying new ones difficult.

    There's probably more, but I can't bring them to mind right now- this is still pre-breakfast time for me, so am still a tad dozy!

  2. Thanks for the reply Lauren, that's very reassuring for me!

    I think I've found you on FB - thanks for the offer to talk. I was thinking chatting elsewhere for that particular point!

    My memory is issuesome too (hence me forgetting including that in the post - ha!) - I always had nice animal calendars every year but very rarely wrote things down in them before being ill as I'd remember them all. Now finding that I have to write EVERYTHING down right away or I forget very quickly. A pocket diary is something I should really look into buying I think!

  3. Wow, first Fibro blog I've ever read that is a) geeky (nice one!) and b) not at all self-pitying. It was a pleasure to read - you write really well.

  4. Wow, thank you very much :) I think everyone is self-pitying on occasion but I don't think it's helpful for others to read that kind of thing, so I try and remain upbeat! I'm glad you liked it :) xx

  5. You do indeed write wonderfully! I can relate to most of those symptoms. The lack of ability to vocalise what I'm thinking and to find the right word to explain what I'm trying to say is horrid! I also love language and used to be an avid writer. Now I find I struggle too long to find the right word so it just takes too damn long! I really admire your ability to put together such eloquent blogs while battling the fog.

    Memory if a big problem for me too. This is coming from someone with a ridiculously good memory. I hate it!

    Bowel problems again a biggy for me.

    I was amazed to read the sound one!! I am awful with sound and thought it was just my pickiness! I never even thought to attribute it to fibro. One of my biggest pet peeves is the change in the volume on TV programs when the ads come on.... Arrrrgggghhhhh!

  6. I only found out about sound through a GP who I mentioned it to - the sensory overload and lack of filtering anyway - and he was a pain specialist and said "Yep, standard Fibro, don't fret!" - it was really reassuring for me at the time!

    Thanks Lisa, you're far too kind! :) xx