Tuesday, 25 May 2010

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)

12 comments:

  1. I think the job ad for your blog would read more like:

    If you want share your life with honesty, humour and creativity in a health blog, contact +++.

    I understand about being self conscious about your blog, perhaps especially because you've had trolls. I really love your blog, if that helps you feel better at all, and I know you really help others going through similar things. So screw grammar and spelling! haha just kidding.

    Your limited medication options because of your blood pressure sure do complicate your health situation even more! That has to be so frustrating. I hope these sensations (or lack of) improve at least!

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  2. I like the way you write and have always found your blog interesting.

    I thought I was the only person that was shocked when I found out I could no longer feel hot or cold with my feet. I have absolutely no idea when it started. I am one of the lucky people who do not have pain with SFN.

    A couple of years ago they discovered that I had a B12 deficiency. After the first B12 shot the burning in my feet stopped. A few months ago I skipped the monthly B12 shot and the burning returned.

    It was about a year after the B12 problem was discovered that a doctor did a skin biopsy and found all my little nerves were dead.

    I think this timeline sounds confusing but then again my favorite pastime is confusing doctors.

    Jane

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  3. My brain is mushy and I need to return to read the whole post. For the record I find your blog compared to other health related blogs, just fantastic. You are a talented, witty and intelligent writer.

    So on my list of to do's when I am not one eyed shut and still seeing double is to return to this pos and read it in its entirity. I say stuff, grammar and spelling. I used to be good at all that now I can still type but where my general faculties have gone, god only knows.

    Stay as you are, please don't doubt anything at all. Your blog in my humble opinion is great.

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  4. A) Loved the Ad
    B) Holy Crap, the nerve stuff sounds terrible. I wish I was more eloquent at the moment, but seriously, wow, Michelle. You described it so well, so that even those of us without Bob can learn about this aspect of the crappy Bob. I HATE that you are walking through this and that SNAFU is a part of Dys...ugg.
    C) Your blog rocks because you can come here to get information as well as fart jokes. It's all inclusive.
    D) Before it processed in my brain that you were talking about shoes and not silly string up the butt, I was, I won't lie, jealous of your ability to do a strip dance in skanky clothes in the dead of winter if need be. You never know when duty will call.

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  5. i didnt know that hot feet had a name attached to them. i get this joyous complaint too. although without the pain. you can often find me at night lifting my bendy legs over the sink running the cold tap over them. still after ten minutes or so the hotness will return.

    your blog is a comfort to me, for that reason, i realise that im not alone is the potsie world. i have trouble writing, lots of its and ands, because my brain simply wont work and as for my memory. it isnt a test, we arent going to get graded. keep the writing up. xxxx

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  6. Thanks everyone for the support. I think I was just having one of those woe is me days. It reads back more whiny than I realised at the time I pushed post. Sometimes I look at other blogs and they are so polished and well written and I wonder what the hell I'm doing. I know it's mine and I shouldn't care, and most days I don't, but some days I just wish I could write like I used to, I was articulate an polished once really I was.

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  7. Lucy - trust you to go straight to the stripping in skanky clothes LOL.

    Em - it's amazing how many of us have similar stuff going on but no idea that each of us is dealing with it. It's the one good thing about a lot of blogs, you often find out more than at a docs office.

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  8. Hey Michelle! I truely enjoyed your wit and humor as you so eloquently and accurately described SNAFU. I had a supposedly expert neurologist at UAB do all kinds of tests on me because I had areas of numbness and tingling, weakness in my hands,how my feet burned and turned white in the tub, part of my face droops,etc. She did the sharp/dull test all over my body. Then she pronounced me someone she has never seen anything like. Furthermore, she had no idea what to do for me. Where did you get diagnosed? Angela Rowe

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  9. Angela - hi there. I am in Australia and was diagnosed by a private neurologist at St Vincent's Hospital. She was a specialist in myopathies and neuropathies. I've found over the years that the quality of docs can vary widely. When I used to work in neurology you soon worked out who you'd see if you had a problem and who you wouldn't send your dog to.

    I'm thinking we need to start up a group. Something like "Mystery Inc" for all of us 'medical mysteries' to habg out. :)

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  10. Hi Michelle, loved your blog and thank you for sharing your experiences. My mother is suffering from pretty much the same thing as you. The worst is during the night where she can't sleep from the burning on her body. Can you provide me the name of your specialist where I may take my mother to see here as well.

    Regards, Helena.

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  11. Helena - are you in Australia? It can be hard to find a good specialist at times though most neuros tend to know about SFN. The night time burning is horrible. I know for me I have yet to find a solution. I hope you can find someone to help your mum soon.

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  12. Hello Michelle, thanks for a great blog, so well written and so identifiable, I am in QLD, who was the pathologist who did your biopsy etc. I have had trouble finding anyone here who does this, thanks Ted

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx