An Injury Is Never Just An Injury

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When you have fibromyalgia, or trigeminal neuralgia, an injury is never “just” an injury.

Three weeks ago a door viciously attacked my little toe.  It was … well it wasn’t broken, and that’s the only positive thing I can say about it!  So the next day my fibromyalgia goes “HAH, PETTY TOE, LET ME SHOW YOU THE TRUE MEANING OF PAIN” and everything from my waist down felt swollen and heavy and on fire.  My joints all the way up to my hips were stiff.  I lay in bed and read trashy fanfiction to distract myself from the pain.  The day after that the burning heavy stiff sensation was only in the leg with the bung toe, and after that it went away completely.

So fibromyalgia is a real asshole when you get hurt.  But to top that off, whenever my fibromyalgia does a flareup, my trigeminal neuralgia does a flare up!

Well today, while sorting rams, I got smacked in the nose.  Fortunately by a hand and not a ram, but still, it was a good thwack.  I went and put cold water on it (the best we could do out on farm) and promptly had a meltdown.

The injury is on my face.  The injury is, specifically, on my nose.  The inflammation will put pressure on the second branch of both trigeminal nerves, and that’s likely to set off my trigeminal neuralgia which I had only just settled down after a volcano pimple on my jaw decided to set the whole thing off (why, oh why, does my face do this to me?).

So I had an anxiety attack, which is kind of understandable.  I don’t want my fibromyalgia to flare up.  I don’t want my trigeminal neuralgia to flare up.  I don’t want to be in pain.

But I don’t really get much of an option, and not doing the things that I love to keep myself safe from injury is also not an option … so I have to be kind to myself when I am injured.  And reduce inflammation as much as possible!

For now it is definitely setting off both trigeminal nerves, but it’s only set off the third branch of one side and mildly set off all three branches on the other.  Here’s hoping fibro doesn’t kick in tomorrow and make all the joints in my upper body stiff and achy!  I’ve got stuff to do!

Goodbye 2019, Hello 2020

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Well.  What a decade this has been.

I moved country.  Twice.  With a lot of animals.  I was married.  I was separated.  I am not yet divorced, but hey that’s coming this year.  I got more animals.  I moved city to pursue the career of my dreams.  I gained a weird older brother in my flatmate.  I met some truly amazing humans through my university course.  I met one of my truest and best friends to date through fandoms.  I met, and fell in love with, my amazing human bean.

I had a breakdown.  I was diagnosed with fibromyalgia.  I built myself back up.  I was diagnosed with trigeminal neuralgia.  I built myself back up.  I got rid of more narcissists on the way.

All throughout I was supported by the most amazing, kind, generous, loving and supportive humans I could ever have been blessed with.  My parents, for whom without which I could not have even begun my journey into my new career, let alone continued on it.  My nearest and dearest friends who have shouted me road trips and meals and yarn, who have given me hugs and cuddles and lent me their ears to vent and rage and cry.  My amazing human being who has stood beside me through ironing out my quirks, my panic attacks, my depression, my medication trials, my descent into physical disability, who has cooked me nutritious meals, has made spiced hot chocolates when things get tough (“I can’t fix it, but I can make hot chocolate!”), has enthused over anything I have shown interest in …

And then there are my amazing animals, three of which I will not get another decade with, who I cherish more than I can say and who have provided me with company, love, fur, poop, barf, and so many laughs.

This decade has, without a doubt, been the toughest I have lived through yet.  The physical, emotional, and mental toll of fibromyalgia and trigeminal neuralgia can not be understated.  It is brutal and it is every damn day.  And yet I feel very fortunate.  I have learned that the people I am surrounded by have more love than I could ever have imagined, and I feel truly honoured.

I am relieved this decade has, at last, passed.  There are many things I look forward to leaving behind.  While I do not ascribe to this ‘new year, new me’ (or ‘new decade, new me’) thing, I do find it is important to identify a ‘turning point’ so to speak, a point at which you can say ‘this situation did not go past that, and it is done’.  For me, the shift from 2019 to 2020 is that, in terms of freeing myself from narcissists (both romantically, and platonically), and the start of my journey into chronic illness.

Now bring me that horizon.

Microvascular Decompression: The Ultimate Fix for Structural Trigeminal Neuralgia

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Today I am talking about brain surgery.  It’s a terrifying thought, having someone faff around inside your head, but it’s also an important thought.  Because if you have a blood vessel touching your trigeminal nerve, this could be your ultimate cure.  You could get out of this life, the one where you’re constantly worried about when the next attack is going to hit, the one where you’re avoiding certain foods because you have to chew them a lot, the one where you can’t go out in the wind or the cold because it sets you off.

You could enjoy your life again.

Australian scientists have shown that chronic pain can physically change the brain.  We have lower levels of glutamate, which is a chemical messenger between brain cells and can help regulate emotion.  What this means is brain cells can no longer communicate in their usual way, and so the ability to process positive emotions is reduced.  So that feeling of being tired and unmotivated all the time?  That’s the effects of this change within your brain.

One of the first steps taken to diagnose and categorise your trigeminal neuralgia should be an MRI – with contrast.  This will allow a neurologist to identify any structures that might be touching or compressing the trigeminal nerve – things like blood vessels or tumours – or any damage to the nerve itself.

If you’ve got a blood vessel touching your trigeminal nerve, I’ve got good news for you: you can get microvascular decompression!

Microvascular decompression is a really cool surgery wherein they go in and put a very specialised sponge material between the blood vessel and the nerve where they are touching.  Once they’re no longer touching, there’s no longer a reason for the trigeminal nerve to go off, effectively curing your trigeminal neuralgia.

But it’s brain surgery, and brain surgery is scary!

In most cases, it’s not actually brain surgery.  The blood vessel and the nerve often touch outside of the brain, sometimes within the skull, sometimes outside the skull.  So while they may be entering your skull, they’re not actually touching your brain.  That remains unmolested.

The sponge they insert into your head is a very specialised one.  It’s not like a kitchen sponge, or like a sea sponge, it’s a very special kind of medical sponge, and it’s very very sterile.  Because of course it’s going somewhere bacteria must never go: inside your skull.  It’s also very small.  When you’re working in a confined space, you don’t want to add too much bulk to existing structures, because there’s nowhere for other structures to go.

It’s carefully placed between the blood vessel and the nerve, right where they are touching, and they stitch the sponge onto the blood vessel.  All blood vessels have several layers of tissue, and the stitches are only placed through the outer layers.  The stitches aren’t placed all the way through, so the inside of the blood vessel remains perfectly smooth, and you don’t get any accidental bleeding.

My best friend who has typical trigeminal neuralgia has just undergone this procedure.  She had an artery twisting around her trigeminal nerve and touching it in two places, so she has two sponges in her skull!  She had her surgery on Monday morning.  She went home on Friday.

For now, the right side of her face is numb, because of course the trigeminal nerve has been faffed about with.  She occasionally gets itchy teeth.  But she is pleased to announce she now has complete taste back on the right side of her face!  This numbness is expected, and it’s expected to continue for the next few weeks to the next few months, and she has commented that it’s bearable because she knows it’s only temporary.

She’s also said it is amazing to be free of pain.

Deep Tissue Massage for Fibromyalgia

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My acupuncturist had a family emergency last month which meant he was off for about three weeks.  During that time I had some fairly considerable trigeminal neuralgia flareups and, in a pain induced panic, decided I must see someone … just not someone with needles.

I looked around online for massage therapists near me and stumbled across this one particular one that had good reviews and wasn’t overly expensive.  I got an appointment for the next day and went in, hoping some massage would ease the fire in my face.

It didn’t.  Oh boy did it not.  What it did do, however, was loosen some knots that haven’t been released in decades, knots my shiatsu massager just would never be able to reach.

Now I’m not talking about your normal relaxation massage where you go in and they kneed you for an hour.  No, I’m talking about the massage where the therapist actively finds the painful spots and then digs her thumbs into them for an hour.  It’s painful.  I make some truly spectacular noises and groans of “oh god” while she’s doing this.  It’s amazing.

I left feeling battered and bruised and nauseated, like I always do with any body work that releases tension, but after a few days I felt revivified!  I went back the next week.

This time she discovered even more knots.  See, now that she’d begun relaxing the superficial layer, she was able to find the deep knots, the ones that cause problems.  The ones that haven’t seen the light of day (or rather, felt the “tender” touch of a massage therapist) for decades, nay, eons!  Well after this session I felt so light headed and dizzy I couldn’t quite function for the rest of the day, or the next three days after that.  She’d knocked something loose in my back that had really done my head in.

I’ve just revisited her today and I am definitely noticing an improvement in how my body feels, despite the pain from coming off Tegretol (another blog post in and of itself!).  I’m also noticing an improvement in how my body moves, which is really rewarding.

My theory is this:  I have a lot of knots.  I have a lot of muscle tension.  I have a lot of muscle fuckery.  This will all be amplified by fibromyalgia, causing me both excessive pain, and excessive stiffness.  If I can work out these knots, release this tension, and improve my muscle health through deep tissue massage and gentle exercise, this will reduce the level of pain I will experience from fibromyalgia, because there is less muscle pathology.

So far I think it’s working?  It’s a bit hard to tell, what with exams, the stress of losing a friend, and coming off Tegretol.  To be honest I’m just throwing everything I can think of at my fibromyalgia and trigeminal neuralgia and hoping something sticks, so identifying exactly what is having exactly how much of a positive impact is going to be a bit tricky.  Here’s hoping the deep tissue massage sticks!

Either way, it’s making me feel better, and that’s the most important thing right now.

Stepping Down on Tegretol SUCKS

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It’s been almost a week since I reduced my dose of Tegretol from twice a day to once a day, and my body is still acclimatising.

The first day was excruciating.  I couldn’t think, had no balance, everything hurt (including my face).  My skin was overly sensitive and every sensation was unpleasant or painful.  My team took one look at me and said go home.  I sat down and did some work, but then gratefully took them up on their suggestion and went home to curl up on the couch and watch my latest high value distraction: Mind Hunter.

The second day was a bit better.  I no longer felt like every part of my body was on fire with fever aches.  I didn’t have much balance, and in fact I sat back from interacting directly with the horses during our practical session due to this, but I was more alive than day one.

I’m now almost a week in.  I’m pretty sure I’m coming down with a minor cold or something of that ilk, as I’ve got the heavy duty fever aches, extreme lethargy, and overall fogginess.  While this is a symptom of my fibromyalgia, it’s usually reserved for ‘coming down with something’ rather than ‘you’ve done too much’.

I will not be getting acupuncture this week, as my acupuncturist has had a family emergency.  I’ll see if I can get two acupuncture treatments in next week or the week after, whenever he’s back, to hit the trigeminal neuralgia hard.  It’s been acting up a bit on one tegretol, and I’d like to settle it back down.

As you may be able to see, my thoughts are still sluggish and somewhat disjointed.  I’m going to blame that on the plague rather than the tegretol, and have a nap.