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 (http://mannatechscience.org/home/products/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?

Hi!!!  I've been away working - however I did find this really interesting article, with many links included within the article, have a look!!!

http://www.envita.com/lyme-disease/hidden-complications-of-lyme-disease-treatment-unveiled-by-new-envita-study

Soooooo very interesting!  I'll be back to my story soon, meantime check these links out.

How would you describe to someone what feels like fire in your blood?  As I lay in bed a few nights ago, I was thinking how to describe what I was feeling.  I didn't think I could use the word pain, I have given birth to children - BIG babies at that (lets just say 9lb+), ouch for those of you who have had smaller - ha (no - just joking - having any baby hurts like a 'you know what'...)!!!  So childbirth, that is what I would describe as pain!!! Full stop!!

What about flare up, how does one describe a flare up?  Especially when a flare up is never the same... I know if someone were to try and explain this to me (and I wasn't a Fibro-ee) I would think 'man this lady is mental!'... seriously, I know it doesn't look good for us, but what can you say?
So as I lay in bed, I was thinking I am having a flare up and I said to myself over and over, 'I hate hurting, I hate being so tired from hurting, and I hate that I don't know how to get through this without thinking all of the above!'.  So I guess hurting is the word I would use - not pain.  I was hurting.  To me it feels like there is fire in my blood.  Sometimes I think that the fire in my blood, decides to congregate at my hip joints, or my shoulders, but the worst and most uncomfortable meeting place for this blood and these angry cells is my groin!  It's like all these angry red-faced cells (probably with horns) decide to pick a hip, or my low back, or my shoulders, or in this most recent flare up, occasionally in my knee, and party like there is no tomorrow!  I'm giggling with my cartoon thoughts but only because I can't think of any way else to deal with it!  I can't cry, I'm too tired to cry - ha!!!  So can you relate to that?  Fire in your blood?

Or maybe I've got it all wrong, and the explanation is that the cells are suffocating and they don't have any oxygen, so they are just sitting their latent, feeling heavy and pressing on my muscles in these areas?  So in the night, as I lay there thinking about what all of this looks like, I might turn over and get some more sleep until I wake again, and wonder how long of a reprieve with sleep was that?

I will get back to the next part of my continuous story soon.  I guess I really just wanted to put it out there that it is difficult to explain or describe to someone this intense ache, or hurting that I experiene.  In some ways I think the normality of life is what sees me through.  I'm just not going to give up or give into this, or those evil red laughing cells that party at night in my joints and muscles!  Thinking about tomorrow, being there for my kids, working at my job, being with my husband, gets me through the night. I'm a stubborn ol'Libra as my sister says, and oh so bloody competitive, so there's no way this 'whatever it is' Fibrowhatthe... is going to take over!  I will win, and I will fight, and I will come out on top.  Maybe it means that I just have to hurt, but I won't let the hurt be bigger than me.  It makes me angry to have to fight, and battle the hurt because all of that takes energy, and it's no wonder that I am sooooo mighty tired some days, who wouldn't be fighting this strange monster that is barely recognised in the medical world?

Rest assured that one day, just like Chronic Fatigue Syndrome, Fibromyalgia will be a 'true and recognised' syndrome and it won't be a syndrome any longer.  Then you and I, and everyone who feels what feels like fire in their blood, or flare ups that sometimes come thick and fast, can feel less confused and not self-conscious about saying 'this is what I am battling!'

Tonight I am hoping (going onto night 5) that the party has disassembled and I will have reprieve from laying awake and trying to figure out how to describe this hurt!!!

I know, I've been away and I've been busy, so I am definitely going to type again soon, but meantime I found this interesting article - so relevant!

http://www.stuff.co.nz/taranaki-daily-news/news/65375931/taranaki-woman-sparks-debate-on-medical-marijuana

Some provinces in Canada have medical use marijuana available, and it hasn't turned the country into crazed addicts for other hard core drugs!  

I have been wanting to blog but I've been too busy - sorry!  I looked at a really great website for Fibro-ees... well it was full of relative info anyway.  And I'm not sure if you remember I was telling you about the link between car accident injury and Fibro... well this website - bang on... you should check it out!  http://www.fmaware.org/ National Fibromyalgia Association, in particular have a look at the 'science' link.  I found it very medically terminated so I had to read it about 4 times before I got what it was saying, but it sunk in... SLOWLY!!! ha!  Have a read and I reckon you will take something from it!  I did.  Even if a confirmation that this is such a varied syndrome that no two people suffer the same.

So, to continue where I left off... after a few weeks on Amitriptyline - YES I was sleeping and also taking about an hour each morning to wake up properly... everyone in the family knew it was coffee first before addressing me or I would barely be able to respond!  So my hubby got into the habit of bringing me coffee in bed (some would say a highly recommended syndrome for those who want to be served coffee in bed ha!)... and then one day my toe went numb, but also part of my scalp... and I started to panic thinking that this surely wasn't right... I was supposed to be getting better!  Could this be even more serious than sleep deprivation I was wondering?  Immediately I rang the Neurologist and she said that she wasn't overly worried (ahem) but organised an MRI as soon as possible!  Okay, so then I was panicking, relooking up the symptoms of MS (Multiple Sclerosis) particularly because it is in my extended family!  What the heck... why of all pieces of my body was my toe going numb?  And part of my scalp feeling all tingly - crikey!  

In the meantime because it takes some time to organise an MRI in this country my Doctor organised an appt with a Rheumatologist because all the test he had run for Lupus and other recognised diseases weren't present... (although my ANA test came back present with autoantibodies in it, he disregarded it as a red-herring as 1/4 people come back positive and they don't have an autoimmune disease present)... strange but true apparently!  Off to the Rheumatologist (not covered in NZ) and a wonderful man he was - top in NZ - we had a good hour appt, he asked loads of questions about me personally and my personality, and questions about me not asking for help in my home and work life, and doing everything on my own, OTT (over the top) trying to do it all yadda yadda, and then performed some pressure point tests, bend over to touch my toes - (no plastic gloves involved here thankfully!), and so on.  Well - to make a long story short, I left there and waited about a week to find out my results... which were - yes... officially diagnosed with Fibromyalgia.  HOWEVER, I wasn't quite prepared to accept it 100% yet!!! 

It was determined that my MRI was going to take a year under public care so after major discussion to be sure my hubby and I decided we would go private and pay the $ for an MRI to put our minds at rest that it wasn't more serious like MS or a tumour!  A fair bit of $ later when the results of my MRI came back clear of MS or tumours, I was coming around to taking the Rheumatologist diagnoses. I settled into taking Amitriptyline and Tramadol (for serious pain during flare ups) and kind of carried on in a bit of a zombie-like state (at least in the mornings) for quite some time!!!  Zombie-like state is no word of a lie, I would have eaten my family and infected them for sure... however I was lucky enough to have a gorgeous and lovely husband who made sure I had caffeine before I could!!!

This is NOT the end of my story of course... there is certainly more more more more, and I know I promised some cartoons from him but he's struggling with the 'PC' side of his cartoons and what people might find funny being a sensitive issue and all... he was telling me about one or two of them he'd drawn and I LOVE them but he's so bloody picky about what is going to be public... crikey... you'd think being a published illustrator he'd just go with it!  I may have to sneak them on here when he's not looking because I know that we will all have a giggle from them!  Like I said though - we mustn't be sensitive about them.  We have to keep laughing don't we?!  It's not a nice thing to have pain, and then no pain (sort of) and then unexpectedly have more pain, and then think it's over for sometime and then go through this cycle over and over again!!!  So, I reckon laughter is good medicine.  Take that as my prescription to you for now... find something that makes you laugh or start hanging out with people who make you laugh, and feel good, because it sure helps.  I know because I have a funny husband, and a funny family, and I think I wouldn't be here without the laughter... it just keeps me going.  Until my next entry... 

After my first very serious and recognisable fibro fog incident (looking back I had many, I just thought I was tired - which I was - but it was so much more than that (that's so obvious to me now).  So off to the Doctor I went and expressed to him that my pain from my back hadn't entirely disappeared, and I told him about my fatigue and pain during the night, and this of course included my hand numbing (which as you may recall was diagnosed as carpal tunnel).  Also, I was constantly dropping things... My doctor who is a lovely man, a very busy man, has always been attentive and wonderful to our whole family said to me (again feel free to laugh because there are a lot of funny things that people have said to me on my journey), "it sounds like you might have a 'bit of' Fibromyalgia."  I was not entirely sure at this point if that was even possible?!  A bit of? From what I read on the internet, you either had it or you didn't, and you just dealt with flare ups.  So he decided in particular for sleeplessness he would give me Norotriptyline, and Tramadol for pain.  So off I went thinking I'd be all better soon because I only have a 'bit of' Fibro.  Ok sweet! 

Enter tachycardia!  I was happily thinking that I was on my way to being healed, when I took my medicine before bed as prescribed and out of no where started having tachycardia.  This was not a pleasant surprise... after a few ambulance calls and trips to the hospital I was sure that I wasn't on my way to better health at all, in fact, I was getting worse.  I chatted with my sister because she had tachycardia and even a surgery for her heart issues, and thought it must be genetic or something! It always seemed to happen mostly during the evening or bed time, which I thought was mighty strange.  After several months of this, I went back to my lovely Doctor who referred me to a neurologist to check out my numbing issues and so forth.  In the meantime I looked at the fine print for Norotriptyline and side affects on the internet, and it stated heart racing (in particular if mixed with opioids) which I queried with the chemist, who then confirmed this!!!  I was a bit perplexed why I was allowed to take them together in the first place.  However, these things do happen but I guess they don't happen to everyone?!

Off to the Neurologist I went.  Apparently she came highly recommended, a lovely lady who is from USA and living in the Land of the Long White Cloud!  Smart lady! No seriously - if you like warm weather most of the year which seems to suit FMS and CFS and arthritic sufferers, this is one of the great places to be... I digress, sorry!  I explained my story to the lovely Doctor of nerves, and after my big long explanation of all my fibro fog (I didn't call it that then as I wasn't familiar with it, my husband called/s it clumsy!), numbness, tingling, etc, she did all the MS physical tests (finger to nose and all) and said that it all looked good, she wasn't worried that I had MS.  Whew!  Her diagnoses is that I was utterly, and truly, majorly sleep deprived!  After years of sleep deprivation, the kind of healing sleep you need to function properly, she said the brain does go foggy, and strange things happen.  The most important thing before we could go forward was to get me sleeping properly, deeply and getting that healing sleep.  My hand numbing, confirmed that she thought even after surgery 1, that I had carpal tunnel (so surgery 2 to be organised).  How do I get to sleep properly?  Amitryptiline!  

So off I went with my new prescription, all positive and sure that THIS time it will be my road to recovery from --- wait for it --- sleep deprivation.  So if I get some long, snuggly, healing sleep I will be FINE FINE FINE.  Yes indeedy. No questions asked being the positive, look on the bright side of life (I feel a song coming on) attitude!  I promise to continue, but for now I must watch my husband cook our tea (ha ha ha ha ha!)... he's amazing!

Before I carry on with my story from where I left off... last night as I was thinking about where to take this blog next, I remembered when I had heard the Doctor say Fibromyalgia, my very inquisitive brain couldn't wait to go home and search it up!  I also immediately told my sister about it, and low and behold she had heard about it!  I couldn't believe she knew about it because a)she's younger and b)I think I'm smarter (he he - she'll love that!)... but what she said to me blew me away!  She said, "Oh yeah, I know about it, they call that the 'lazy person disease' here in Canada."  I was thinking at the time 'what the .... bleep'!  I wasn't about to even consider having a lazy persons disease. I was the furthest kind of person from being lazy.  I have many days where I don't stop, I don't sit until sitting down for tea with my family.  How do people come about making such a judgement on a disorder or disease?  Is it because you can't see it? Anyone who experiences fibro pain understands if you are having a flare up, you have to force yourself to move!  How does that make you lazy? If anything doesn't it make you stronger than anyone?  To be so exhausted or so sore that you have to tell your brain to make your body move?  I'd like to know why this is called the lazy person disease in North America.  How in the world did that happen?  

I also am hoping to introduce some illustrations on this site! YES, illustrations.  You are probably wondering how drawings are going to compliment this blog?!  How can you draw about fibro?  Well, truth be told, I can't... but my husband can.  We have a bit of a dark and sick sense of humor (he is British you know!).  His humour is darker and sicker but I adore him none the less.  We thought it would be funny if he drew some cartoons to express his point of view but you mustn't get offended because it is all in good fun.  For example, when my symptoms started, and there was a slight, ever so slight concern we could be looking at a very serious disease like MS, and we had to consider this... so we decided whatever diagnoses we were going to laugh, and poke fun at me and ourselves, because you know - and I love this saying - 'it could always be worse'.  So over time I hope that he will draw some cartoons so that we can enjoy his dark sense of humor.  

At times I still think they (the medical individuals I have seen) have it wrong... I am not very accepting of having a disorder, or being labelled as unwell, sick, ailing, or anything that makes me feel or sound feeble and unable to cope!  I also think if they have it wrong, and they are giving me pills for the wrong thing, will they one day say 'oops, we've been treating you for this, but you have that' and I have lost years of being correctly treated?  I don't know... maybe some of you feel the same way? 

After years of contemplating doing a blog or sharing what I know and have come across over the years about Fibromyalgia, I finally decided, yes, this is it!  I'm going to do it!  So here I am.  The inspiration for me to do this was an article my sister emailed to me http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me which was similar to what I have experienced in the last 4+ years.  I couldn't help myself and really felt like maybe this was the way to help others.

Strangely my sister is going through her own Fibro journey, and this begs the question is this odd 'syndrome' genetic?  So far, as far as I understand there is no science that confirms this.  If anyone knows any different, I'd be interested to hear about it!

So I was trolling through the internet to see what other blogs were available to peruse, and there were definitely loads, mostly American based (which is fine, I have nothing against them... ha!) but not a lot of bloggers in NZ that I could find.  I was intrigued that the blog stories were all so very similar to one another as far as their journey from misdiagnoses to being formally diagnosed, and then dealing with the lack of knowledge and support for sufferers. I also noticed that many people used language like 'sick' and 'ailing' etc, but for some reason I have never acknowledged myself as sick, in fact, I'm guessing it is probably because I have never truly believed that I am a sufferer.  I guess that might even be a personality trait, I don't suffer for anything (although I know my husband would argue this point to death...!).


My story probably goes a ways back and I don't think I will be able to cover it all in my first post... so I will just type whatever comes to mind as it does, but I will also go back to the beginning purely because if anyone wants to compare, especially new and still skeptical possible Fibro 'afflictees' (love my new word I just made up!), your journey might not end up as long and arduous as mine!!!

Where to begin?  I suppose it may have started many years ago (1994) with a hit and run car accident that my friend and I were in (we were the 'hit' not the 'run'), where I ended up with severe whiplash... however I wasn't to know this until these past few years, because, and I will get to this later, there is suggestion in my Fibro investigations that there is a HUGE correlation between Fibro and neck/back injuries!!!  However, I will begin around 2007 after my carpal tunnel surgery.  I was having a lot of sleep trouble, waking many times during the night, pretty much since 2000 (because I had children! whom I adore, but sleep and babies don't mix well!)... after the children started to sleep through I still had the habit of waking during the night, but also further extended by numbing and tingling in my hands due to carpal tunnel.  So to make a long story short, I had 3 surgeries all up, 2 on my left hand and one on my right hand, the most recent was 2012 (the 2nd on my left for the Guyon nerve).  

Whilst all of this carpal tunnel stuff was happening I happened to be moving some boxes and hurt my back by irritating a disc in my low back... ENTER MY TRIGGER! Yes, this was the beginning of what I call my discouraging journey (2007).  So off to the Dr to be advised that I had irritated a disc, some medication for pain (ibuprofen and Panadol) and rest until the irritation calmed.  

After this disc issue settled I was feeling like I wasn't rested in the mornings and thought it might be down to being low on iron or something (as I was part-time vegetarian (ha ha - meaning only eating chicken and fish)... and I had two very sore spots on either side below my rib cage.  I had had these sore spots on and off for years but my family Doctor (when I was a teen) said (and feel free to laugh), "Well, since you have this pain on both sides of your ribs, you have nothing to worry about!".  So, this Doctor I saw on this particular day wasn't my regular Doctor, but as soon as I mentioned the two sore spots below my ribs on either side, she said, "Oh my, I shouldn't say this, because what I'm going to tell you isn't very nice and you would never want to have this, but you might want to think about looking up Fibromyalgia!" So she wrote it down and off I went to begin searching up this strange syndrome this Doctor said I would never want to have!  

What ensued of course was this irritation never EVER going away completely, but also the start of intermittent sleep and lack of, compacting so much that over the next few months it hurt to move AT ALL mostly at night.  I winced just when rolling over in bed, but the scariest moment of all was experiencing brain fog so bad it felt like I had left my body -- and not so good when one is sitting at an intersection and the lights have turned green!!!  I didn't know what to do next?  Press the gas or press the brake, go forward, turn left, it was beyond me.  Once I figured out and the fog passed, I pulled over and called my husband in tears...