Saturday, 31 January 2015

I had to look back at where I left off so I could continue my story... no it wasn't fibro fog!  I have just been busy.  Cheeky for those of you who thought it was ;)

So, after living like a zombie on Amitriptyline (yes- I did sleep) granted I suppose I was feeling somewhat better because I was sleeping, that deep healing sleep that I had missed out on for so many years, but I wasn't feeling entirely 100% rested, because I was still waking with numbness and tingling in my hands.  As you may have read before I was diagnosed with CTS (Carpal Tunnel) and had already had surgeries on each hand, and then went for a 3rd surgery on my Guyon canal... after that had healed and it was time to return to see how I was getting on, the Surgeon said (after all ALL ALL of this) that since the surgeries didn't resolve my issues that he was going to refer me to another Neurologist.  I think I laughed out loud!  I really have broken down several times after several specialists and several Surgeons and a Neurologist and neurology test after test, whenever I get back to my car - I have a good ol'cry.  Yeah, suck I know!  I usually rang my husband and said I'm over this... I can't do this any more, what the HELL is wrong with me.  Grrrrrrr.    

I often wonder... did I have CTS and it came back with scar tissue? (these were the questions I was going to ask at my next appt), what did they do doing these surgeries?  I read the report after, it said they widened the tunnel and canal... Is this linked to Fibro?  Will I EVER get an answer?  Does everyone else in the world go through this?  Does everyone else feel like a hypochondriac?  Does everyone else get tired of crying to their spouse about getting zero answers from the medical industry, and hurting, a lack of sleep, etc?  If I were a cartoon you'd picture me spinning around like I was released from a spinning top string, because that is how I felt (still do!)!!!

Finally it was time to go to my next Neurologist appt.  What a lovely Doctor.  A lengthy appointment was had - he took the utmost of time with me and I felt like I might be getting somewhere.  He did the usual neurological tests, poking and prodding, using a pin to check sensations and all.  Probably one of the most intriguing moments was when he talked about genetics and was asking about other family member health issues, diet issues etc.  He wasn't from NZ and he said there were lots of studies where he was from to suggest that some of these issues could be related to an intolerance of some sort, particularly because there is celiac disease in my family he suggested a wheat/gluten intolerance.  He wasn't suggesting this was my main problem but maybe a contributing factor to some of my symptoms... which I didn't entirely disagree with...

This reminds me too I forgot to say, that early on in my journey (although I much prefer a more interesting and fun journey) my doctor diagnosed me (yes AS well!) with low B12 and he felt maybe a contributor to the numbness and tingling issues I was experiencing, but to know for sure I would have to get my B12 up to normal.  It was ridiculously low (just about below 80 I think he said) so I was immediately advised to get weekly B12 shots, and then moved to monthly.  After going back and still having issues keeping a normal level, the doctor so kindly advised he didn't think I should be semi-vegetarian (YES I said semi-vegetarian, I know I'm opening a can of worms here... this means (to me and many others) I only ate fish and chicken, and no other meat product (because I thought my stomach problems were from red meat because my mother said so... OK? ha!)... so I became a red meat eater because I was going to do anything to try and get this bloody numbing and tingling to disappear!!!  I must admit - I've never looked back!  After my husband made me the most delicious steak I had ever eaten it became a weekly meal (doctor prescribed you know!)... you are all wondering, has it helped?  NO, but I bloody love a good steak and pretty much anything that tastes good cooked on a BBQ (only organic though, I know... that's yet another can of worms for some!)... I no longer go for B12 shots I use Nutriverus ( to maintain my levels and as a bonus I get a whole bunch of other nutrients as well.

So back to my Neurologist appt.  Where was I?  (No, not fibro fog, you try and remember all your details - see how you go - ha!).  I did discover after this appt with some delving that there definitely are some links to Fibro and gluten intolerance and so forth but I will get back to that.  Are you all keeping up?  I know, I go a bit here and there as I remember things.  It's kind of like watching or listening to Billy Connelly when he tells a story - except he's funny!!!  The Neurologist, if anything, became my new hero in a way.  Why you ask?  Nothing happened!  Don't be so rude!  I am happily married to the most wonderful gorgeous man alive!  (although this Neurologist was attractive I must say!)... ok, enough of that, you're dying to know why?!!  HE SAVED ME FROM BEING A ZOMBIE (an Amitriptyline ZOMBIE!!!)... yes, he did.  He prescribed me Gabapentin.  Enter a new lease on life, at least one that allowed me to wake up, properly wake up and get up, right away, without taking an hour to gather my senses and pull my heavy drug induced self upright and to feel some normalcy in my life first thing in the morning!  Maybe not everyone reacts the same but for several years, yes I slept some good night sleeps mostly, but I couldn't shake the drag for the first part of my day (and I was only on 10mg/3x at night =3pills).  I'll tell you how potent these were... but don't tell anyone because as you know you aren't supposed to share prescribed medicine... my husband who is 6'1 and a solid man (solid does not mean fat by the way, not that there is anything wrong with that, but just trying to paint a picture) was having trouble sleeping (stress from work) for about 3 nights, and he said to me I need something to make me have a good night sleep, so I let him have one, just one... and he slept all night, didn't move until 9am!!! (He wakes up at 5.30am EVERY morning) so of course I thought he was dead, drooling and all (you can laugh because it was funny but only because he wasn't really dead!)... and then he was hung over from it all morning.  He said to me he had a new outlook on what I had to go through to function on 3 of those bloody pills!!!  We laugh now because it is quite funny that at first he thought hooray, when I got Amitriptyline because he says I was no longer b*tchy ha!  (in the nicest possible way! he knows why now as obviously I was sleep deprived for so many years, but I honestly wasn't a b*tch, I was just a very, very, very tired woman trying to function normally!)... to a woman who can rise up at a decent hour without my ass dragging on the ground!  Here is where I reckon you should feel free to show your partner, whoever doesn't have Fibro this excerpt, so they know firstly why you are a zombie if you are on Amitrip (I'm tired of typing the whole thing so I'm shortening it), and secondly why you might be b*tchy sometimes, and thirdly, why they should make you a coffee or tea every morning!

Ok, so now I've been on Gabapentin, am I cured?

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