Small Fibre Neuropathy: SNAFU

I think I missed the class where you get taught how to write a health blog.  Like everything else in my life I'm doing yet another half-arsed job.  If there was a job ad for my blog it would read something like this:

Want to write a crappy health blog?  Did you miss the boat on grammatical skills?  Do you think a 'semi- colon' is someone with half an arse?  Or, that commas and exclamation points can never be overused?  Do you mix up your 'there', 'their' and 'they're"?  Do you think spell check is only used buy dull people?  Do you like to tell inappropriate, and frequently unfunny jokes?  Do you laugh at farts and butt crack?  Are you lazy, and can't always be bothered to blog on a regular basis?  Do you have an encyclopaedic knowledge of obscure music, TV shows and useless facts?  Do you think there is no such thing as 'too much information'?  Do you forget that you are writing a health blog and instead insist on discussing the deep intellectual sub-plot of America's Next Top model, at length?  Are you mildly insane with a good dash of crazy? Then you may be just the person we are looking for.

Of late, if someone happened to come across my blog they'd wonder what the hell was going on, or perhaps, if I have multiple personalities, each of which now write for my blog.  I look at other health blogs which are full of information, inspiration and epiphanies and think I must have missed the memo.  Well that or I have some rather twisted issues that can only be resolved with years of therapy.

(Maybe this is why I love The United States of Tara?  Photo from here).

So I thought it was about time I actually spoke about something health related as this is technically supposed to be a health blog (though I sometimes think "dross from my head" blog, would be more appropriate).

I've mentioned briefly that last year I added Small Fibre Neuropathy (SFN), or as I like to call it SNAFU, to my ever increasing list of joy.  Like Bob no one has really heard of SNAFU.  Just once I'd like to get something relatively normal, a beige disorder.  I have way to many exotic rainbow-coloured disorders, I need some beige to balance it all out.  SNAFU is just the latest (and I'm sure not the last) chartreuse coloured jumpsuit I've added to my wardrobe.

SNAFU has many names, including periperal neuropathy and autonomic neuropathy.  It most commonly occurs in the elderly (insert I am an old fart joke here).  Sometimes it's due to an underlying disorder eg diabetes or HIV, and sometimes, as in my case, it's due to some unknown factor.   Shocking I know, international woman of mystery that I am.  Personally, I think mine has developed due to the consumption of the worlds most evil and unpalatable vegetable, broccoli.  So from now on I'll be broccoli free, for medical reasons of course.  I don't care if that makes me sound nuts, it's as good a reason as any at this point, and it means no more hideous broccoli in my life.  It's what my mother would call "a method in my madness".

SNAFU occurs when the small somatic and autonomic nerve fibers (small myelinated A-delta and unmyelinated C fibers, for the technically minded)
are damaged or die.  This can result in many symptoms including pain, burning, tingling, numbness, reduced ability to feel temperature, dry eyes and decreased sweating.  Symptoms tend to have a very distinct pattern, called glove and stocking, that gradually covers your hands and feet and then up your legs and arms.  Now I'll always pick numbness over pain, but it to can be a bit problematic as my run in with the rose bush demonstrates.

For me I first really noticed it in my feet (although my hands are also affected), in particular the outside 3 toes on my right foot (my whole foot hadn't felt 'right' for ages).  They stared to burn.  And I don't mean putting cold hands under warm water kind of burn.  I mean it felt like someone had taken my toes and dipped them in a lava bath and then rubbed in some ground glass for fun.  Any touch hurt, even my softest socks felt like branding irons on my toes.  It has since spread to both feet and more toes.  Woo Hoo.  Now I at least have an excuse for my bad dancing.  Luckily it is not consistent excruciating pain, which some people do experience, or maybe my threshold has inceased so it's just taking more pain to make me take any notice.  I also have patches of burning pain on other parts of my body at times (eg my back), super tender for a few days and then goes away. Fun, fun, fun.

Night time is the worst, or maybe it's just that everything always seems worse when you are lying in the dark unable to sleep.  The souls of my feet and toes burn and there is little that can relieve the pain.

Weirdly I have patches of numbness too.  Whilst the tips of my toes burn, at times the toes themselves are numb.  Bizarre I know.  My husband thinks it's hilarious.  The other day he thought it'd be funny to put business cards between my toes and me not notice until I went to move my feet.  Yes, yes, very funny.  You should have your own sitcom dear.  He's a laugh a minute some days.  At least I provide comic relief for my family.

I often feel like I am walking on stones on the floor, but nothing is there.  Other times it feels a bit like someone has covered my feet in sticky tape when I walk, it's a weird muted sensation on the bottom of my feet.  

The weirdest symptom for me and the one I had no idea about until I went to the neurologist was that I can't really feel hot and cold anymore.  Especially in my lower legs and feet.  This explains my ability to wear thongs (the shoes, not the butt flossing underwear) in the middle of winter and even in the snow.  She ran an ice cold metal thingy up my leg and it wasn't until she got an inch below my knee that I could feel it (now it's up to my knee).  I will admit that made me sit up and go "oh crap".  Usually I'm well aware of the the signs of shoddiness in my body before I see a doc, I don't like being surprised, especially about things like dead nerves. 

She could also map the neuropathy by the patterning on my legs (the skin over the affected area may appear atrophic, dry, shiny, discolored, or mildly edematous as the result of sudomotor and vasomotor abnormalities*).  All this time I'd been spending cash on fancy creams to get rid of the marks on my leg and now I find out that it's where the nerves had died, YAY.   I feel like I should go up to the Myer's cosmetics lady and say sorry for all the times I've cursed her name for selling me a dud, and very expensive product.

As I've mentioned before, I don't sweat much either, and I can't recall the last time I had sweaty hands and feet.  Good news for my shoes and for any hand shaking.  I wonder if I could pass a lie detector now?  No sweaty finger tips to give me away.  Cool.  My hands and feet always feel ice cold and like dried old parchment (sexy).  Of course, this does result in my husband yelling at me not to touch him, in his sleep.  I'm ignoring the fact that this actually represents dead nerves and I'm going with the old "cold hands warm heart" theory. 

I've had patients, in my pre-Bob working life, with SNAFU.  I remember an old lady in particular who kept telling me that the reason she was unable to open her front door was becasue her hands were 'smooth'.  Now I know what she means, although technically she did have dementia and couldn't work out how to use the door knob.  She also called me 'Bessy' and would flash me periodically (lets just say gravity affects ALL parts of the body, ick), so perhaps she's not the best example.  My hands always feel 'smooth' and it is hard to open things.  It's an odd sensation. 

Treatment is drugs.  Unfortunately for me most of the avaible drugs also mess with blood pressure which mean I can't take them or they aren't on PBS meaning they are out of my price range.  Last thing I need is something that will drop my bp or mess with my other health issues.   So after yet another $300, my neuro told me the best treatment for me was "sock therapy'.  Ie, wear socks to protect my toes from damage.  I wonder if some science nerd somewhere got a grant to put tiny little socks on the feet of rats and then let them play in the snow, to work that one out.  I can use ice water for the burning and some topical pain relief but that's about it.  I have also learnt things along the way like, don't use a nail brush on super sensitive toes, don't nudge the cat out of the way with you bare toes, and don't let your stupidly large dogs step on your toes when they run up to say hi.

Now trying to do the good health blogger thing I'll include a couple of medical articles in a half-hearted attempt at being informative.

*This is a good, easy to read summary.

Clear review of diagnostic criteria.


In my new pledge to find silver-linings, I think I have found my new super cool tattoo.  What do you think?

(photo from here).

Okay, one of my personalities requies chocolate so I must go.

Cheers
The SNAFUed Michelle :)

Where is my mind?, The Pixies (1988) (Fight Club Soundtrack)

Hailstones, Hairy Legs and 'Arse Illnesses'.

Despite rumours to the contrary I'm still alive and kicking. Well maybe alive and sitting.  Lets go with, alive and breathing.  Well except when my body decides that breathing should become tricky.  Inhale.  Exhale.  Inhale.  Exhale......complex stuff apparently.  Maybe I should just go with existing, and continuing to swear and shake my fist at the universe. 

I'm starting to think the universe is actually one of those mean girls from high school.  You know the ones I'm talking about.  Perfect hair, perfect clothes, popular, pushes you over in the change room whilst you are getting dressed, so you trip and fall flat on your face wearing nothing but a singlet and your granny undies around your ankles, because it's soooooo funny.  Mind you I am kinda hoping that like at my 15 year high school reunion, the universe will get its comeuppance and become a fat, dull women, stuck in a loveless marriages to an obnoxious alcoholic.  Not that I'm bitter or anything. 

So to sum it all up.  Health shit.  Brain long gone.  Bad attitude continues.

I do apologise to all those who've sent me messages, emails etc and have yet to receive a reply.  They were much appreciated but over the last, well forever, about the most I've been able to stretch my brain to do is the occasional one line Facebook status update.  Lets face it when you only have three braincells left and two of those are dedicated to remembering to breathe, it puts quite a lot of pressure on that one little neuron.  The little fella is doing all he can but he has a lot on his plate at the moment.

I have roughly a bazillion blogs to read thanks to those dedicated bloggers who blog rain, hail, or shine, hardworking bastards.  I may just have to start over from now, as I doubt I'll ever get caught up otherwise.  Frankly reading well written, entertaining, grammar perfect, prose or poetry is, aside from the lost brain issue, rather disheartening at the moment. Though I must say I have really enjoyed Miss Buckle, whose beautiful pictures are like a little ray of sunshine on my crappy little mind.  Cupcakes today, does it get any better?

It's been a bit of hectic time around here, aside from my health.  For those who don't live in Australia, you are probably unaware that my fair city of Melbourne experienced it's worst thunderstorm in history the Saturday before last.  Hailstones the size of cricket balls decided to hit our house with abandon.  This left us with broken windows (any tips on getting glass shards out of toaster will be much appreciated), flooding, shredded carport, nude trees, and a dripping roof.    I think we will be playing "who can find glass shards in the weirdest places?", for months to come.  Fun for all the family. Actually we got off much better than a lot of our neighbours so can't really complain.  I will now suck it up and move on.

Melbourne Hailstorm 

My attempts at being a real girl have taken another hit.  Whether its Bob or one of his dodgy relatives, neither my cardio or neuro can tell me, but my super sensitive reflexes have put paid to the annoying, but necessary, act of shaving my legs.  "Go get your legs waxed you stupid wingy woman", I hear you say.  Well bite me. I refuse.  Number one, it hurts and I am a wuss.  Number two, you have to look at those long fly strips covered in your leg hair.  Ick!  Number three, that would be giving in and dammit, I may haemorrage or lose a leg thanks to an errant blade flick, but I would rather have be known as Pegleg Michelle than give in.  Mind you this logic is coming from a woman who thought that chopping off my own fringe in a fit of pique an hour ago was a good idea. So my reasoning may be questionable.

Note to self: do not cut own fringe you stupid twatt.  It never works, and no one is going to buy your story that it's an artsy haircut in honour of Fashion Week.  

As any woman knows shaving your legs is a rite of passage.  You must defy your mum's rule that you are too young to shave your legs.  You must find a crappy disposable Gillette razor up the back of the bathroom drawer.  Be totally unaware that it's your Dad's razor, or that there are even such things as shavers for men and women.  You must sneak into the bathroom when your mum's out in the garden.  You must sit awkwardly on the edge of the bath with your legs arranged like a giant pretzel.  You must try and do it really fast so you don't get caught.  You must wonder why the razor suddenly stops and won't go further up your leg no matter how you pull on it.  You must glance down at your shin and freeze in horror as you realize the reason the blade wont go any further is because it is embedded in your shin.  You must run screaming to your mum who proceeds with the requisite "I told you so" speech and eye rolling, and then washes out your cut with Detol leading to lots of big girl screaming.  In one week pain forgotten, you must set yourself up in the bathroom again, determined to prove your mum wrong. 

My shaving history has been one of knicks and cuts and an unaliable inability to get every last hair, leading to weird hair patches on ankles, knees and shins.  Hence you may wonder at my saddness at the passing of this dangerous personal grooming event.  But dammit I'm a girl and I should be able to shave my damn hairy legs.  Maybe I should just go with the European trend and embrace my gorialla legs and hairy armpits.  Winter is coming up anyway, so no one will know.

Alas I fear despite my determination to continue, shaving is now a thing of the past.  Running a shaver lightly over my knee and watching my leg leap out in front of me shaking adds a whole new degree of difficulty to what was already a difficult task, with the constraints of Bob.  Add in the patchy sensation of SNAFU, which appears to be spreading, and I may as well get used to my eco-friendly if sight-unfriendly, leg warmers.  I may stretch to using one of those foul smelling cremes that dissolve the hairs on your leg for special occasions, but I have a slight aversion to the frequent use of something that is able to disolve hair, and as the packet states, can cause chemical burns if left on too long.

Maybe if my leg hair gets long enough I could braid it and do cool dye colours.  If the fashionistas can get away with mantyhose, I can surely start a new trend in eco-friendly, au natural hairy fashion.

 (Sexy? No?)

In my recent bouts of procrstination and mindnumbing dullness, I have also added Google Analytics to my blog.  I am now addicted.  I am particularly fond of the section which lets you see the Google Searches that have led people to find your blog.  Apparently if you put in "dysautonomia + marijuana" you come to my blog, who knew?  One reference to medicinal marijuana is all it takes.  I am not alone in this as Lucy from Costochondritis was recently found thourgh a similar search.  Something you want to tell me Lucy?  It is clear now that between munching corn chips and rolling a joint, Cheech & Chong, have finally found the internet.  My personal favourite was that my blog is linked to searches for "Arse Illnesses".  I laughed, and I laughed, and I laughed.  It is so appropriate on so many levels and made me so proud.

So on that note, and in honour of my ganja consuming readers, hand over the Dorritos and:

I say
Pass the Dutchie on the left hand side
Pass the Dutchie on the left hand side
It a gonna burn, give me music make me jump and prance
It a go done, give me the music make me rock in the dance
(Musical Youth,1982) *

Cheers:

The Arse Woman aka Michelle :)

* Trivia for the Day: Originally, this song was "Pass The Kutchie," meaning a marijuana pipe. However, because all the members of Musical Youth were between 11 and 16 years old at the time, the group's manager suggested a lyric change, replacing "Kouchie" with "Dutchie", a cooking pot.

A Word From Our Sponsor IX

Well I'm back from the wilderness finally. I think. Maybe. We'll see. Fingers crossed. Touching copious amounts of wood. Oh lord, I know I've jinxed it now, might as well smash a few mirrors and seek out a couple of black cats. Here puss puss puss.

Thanks to all for the well wishes, they were greatly appreciated. I will get around to answering them but it will probably take some time as whilst the mind is willing it is also beset by a rather thick brain fog at present. So sorry all, but at least you know I'm just brain dead and not being a complete cow and ignoring you. For anyone who has been hanging out for the next exciting instalment of the Adventures of Michelle and Bob, it may be time to get a hobby cause I'm really not that exciting. Actually dull may be the best way to describe my life and mental capacities at present. I do appreciate everyone checking back to see if I've posted anything new (makes my stats look good for very little effort on my behalf), so thanks for the perseverance.

Still on the recovery from my run in with that rather vicious wall. Turns out he brought some friends along and they all decided to play a hilarious game of Stacks On Michelle, which has left me rather bruised and battered.

It's been a long rocky road over the past month. My plan to be in the Guinness Book of Records for the best impersonation of a pin cushion is right on track. I've been poked and prodded, strapped up and down, zapped, scanned and sucked dry through copious amounts of blood tests. I even managed to have needles sticking out of both arms and a leg all whilst attempting to stand. I personally think they strap you down during these procedures so you wont be able to hit them with your pathetically weak arms each time they tell you to relax your muscles. I've also played the less than pleasant game of find the vein with my cardio for about an hour and found that I could still feel pain despite a local anaesthetic. YAY!!

My collection of acronyms is growing with the edition of SFN (I have chosen to rename it SNAFU as that just seems more appropriate at this point) this last week. SNAFU is Small Fibre Neuropathy, yeah exciting I know. Well you can take the girl out of the research but you can't take the research out of the girl, so I went on my usual path of trying to find out all I can about my latest edition. So first article, first line what do I find?, "small fiber neuropathy is increasingly being recognized as the major cause of painful buring sensations in the feet, ESPECIALLY IN THE ELDERLY". That's right "especially in the bloody elderly". Yep, I have added another old chick symptom to my list. That's so depressing. I really have to stop looking crap up. Ignorance really is bliss. Oh yeah, and the major drugs used to treat SNAFU lower you bp, which means I can't use them. I also get to be idiopathic girl again as I don't have any of the known causes of SNAFU. Woo Hoo!! According to my neurologist I'm "such a medical mystery". Well fanbloodytastic, that just makes my day. But wait there's more. I also have the most pathologically abnormal reflexes she's ever seen in someone who hasn't been diagnosed with a serious neurological condition. Surprise, surprise, she has no idea why. Well Merry Christmas to you too lady. I so need a holiday right about now.

I did manage to get out for one night which was a bit of a miracle. One of my physio chicks has made it back to the real world of ballet so we all crammed into a car to watch her performance. Between the four of us we managed to form almost one whole brain and not only picked everyone up, but got there, got a great park, found our seats and got home again in one piece. A triumph for all involved. So a big shout out to Sarah and her pointe shoes. I have no idea how she stands, let alone jumps on those things, especially with such grace and ease. Rather knackered the next day but so worth it.

Speaking of physio, we have recently been forced out of the hospital to a new gym. Our class is lead by a women who I believe is the long lost sister of the Supernanny, complete with the patronising, romper room accent. Well it turns out that we are "unasseptible". We talk and laugh too much, and are wasting her and our time. Delightful. We are also "sneaky", what the hell? I feel like I'm 12 again and have been caught hiding my over-cooked peas under my mashed potatoes! Sneaky my arse. So sorry our neurological and other illnesses mean we can't get into the gym bunny vibe. I am having trouble lifting a half kilo weight because I have a neurocardiogenic disorder (and apparently now SNAFU) not because I'm being lazy! Of course we are rather horrible for trying to make it all a bit bearable by having a laugh! So I must say I am not in the least inclined to make the effort to go back except I decondition at the drop of a hat. Damn it. My bestie Kerri has introduced a new swear word to the world after a recent trip to Ikea, "fargrik" (apparently it means plate, but "plate you"just doesn't cut it ). So I have decided to say fargrik to you nasty gym lady, fargrik to you!!

Well that's about it in a nutshell. There's probably more and I've likely missed something super important that's happened, but its all really been a bit of a blur. I think it's less blurry now but I could just be delusional from lack of blood to the brain. So just read this keeping in mind that I may still be in oxygen depleted fantasy land (it's really quite a lovely land that one).

Cheers
The recently SNAFUed Michelle :)