It has been ages.
I have so much to type - but it will have to be after Monday!
The latest visit to the Neurologist was so enlightening!  And as I have typed before... it doesn't give me great assurance or belief in our medical systems... we are now pursuing the lowb12 route, I have another b12 test on Monday.  After that I will be back and if it is low, I'll tell you the next step, if it is normal... then I don't know what!!!

Meantime - check out some of the b12 deficiency symptoms, they tie in with lots of Fibro symptoms, not saying you have one or the other, because as my latest Neurologist said you can have more than 1 syndrome or disease, and unfortunately Doctors quite often put people with Fibro in the Fibro box whatever you may be presenting.

Google low b12.  Get tested too, just to be sure.

I'll be back soon!
I've missed this release!

It has been far, far, far too long!  I have missed blogging!  Every day I think I will get a chance to blog, and have a look at some other Fibro blogs and then the time disappears... 

Part of the reason I wanted to blog today was because I was thinking about my blog awhile ago when I wrote about 'fire in my blood'.   When I have a rough night I just have to say to my hubby in the morning - 'fire' last night... he is so understanding.  I wonder how many people are without this kind of support?! It worries me.  I don't know how I could live this fibro life without my lovely hubby!!

I have had some good weeks and bad weeks as you all will know out there, that 'such is the life' of chronic pain... I tossed and turned all night trying to find a comfortable position and decided that it wasn't just fire in my blood last night... it was dull daggers in and out of my joints!  I'm not sure if that is progression in pain to fire in the blood or equal?!  

After all these years I still can't get my head around the word 'chronic'... on those really good days I still think, 'yay, I'm healed' but it is oh so temporary.  Why do I think that it is over? When it won't ever be over?!  And so the meaning in the dictionary says: lasting a long time: of a disease, deep seated or long continued.  So it is true!  How can I not remember that this is the way it goes... maybe fibro fog gets the best of me on those days and I forget that chronic means it isn't going away?!  Isn't 'deep seated' so very, very true too.  It is the worst kind of deep, deep in the blood, deep in the bones, deep in the joints, deep in every cell you feel the sharp edge of it all.  

I wonder, in 2005 there were 5 million Americans affected by fibromyalgia, how many more in 2015?!  That isn't even worldwide!  In searching statistics I found this site, but I am sure there are plenty more out there that can determine how many people are affected.

http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

So strange that with so many affected that there is still so much vagueness surrounding this #2 rheumatic condition next to Osteoarthritis at #1.  I say, what is up with that???  I suppose we can only hope that over time there will be a successful and passionate scientist who can find what we need to get rid of chronic pain and illnesses!!!

Yesterday marked the day that I re-realised how important it is to have a Dr that believes that Fibromyalgia is a real syndrome.  I have been waiting to see the Neurologist that prescribed Gabapentin to me and re-ordered the nerve conduction study.  He said to me and wrote in a letter to the Dr that we would meet again after the results to discuss our next move.  So I waited, and waited, and waited... I ignorantly thought that I was in the system and it was just taking a LONG time to get in to see him, which usually does happen, YES about a year wouldn't be unheard of in our Public system.  I queried this with the Dr via email and I did say there is no point in making an appt to see him to just 'query' where we are at with my re-booking of the Neurologist... he agreed!!!  He even said there is no point.  So in my stubborn way I had to wait until I 'needed' to go to the Dr for something - so that I didn't feel like I was wasting yet another $45!  I'm not having a moan here I promise - I just want to prove a point to everyone that you need to see the signals and not feel bad for changing Dr's, because for some unknown reason I have felt loyal and I shouldn't if I am not going to be taken seriously!!!

So to make a long story short... I booked in because I hurt my shoulder lifting heavy boxes... made my appt... and incorporated this sore shoulder with a discussion about where we are at with my 'real life long problem'!.  Once again - I was let down.  The Dr was condescending in a way that made me sad for all of his patients that might have a chronic pain disorder that didn't have a proper diagnoses model.  He wasn't even able to 'say' that I had Fibro even though I have been properly diagnosed by a Rheumotologist.  When we were discussing my issues, again, he was asking me exactly how it felt - how can you describe it???  I tried to distinguish between my all over aching from the numbing and tingling in my hands because that has been my real problem lately, the one that does wake me or keep me from getting proper sleep at night!  He looked up the letter from the Neurologist (which I asked someone to do months ago) and YES indeed he said he wanted a follow up after my last nerve conduction... and my Dr just 'filed' the letter when he got it because it basically said that my test was normal (in that they don't think I need another carpal tunnel surgery)... WTF????  I had this test done in Aug 2014, he would have gotten my results around then!  I've been waiting since then just thinking I was in the system 'waiting to see the neurologist'.  Hence my huge ramble today... don't take for granted that you are being watched out for in the system, because you are not!!!  I kind of did trust that my Dr wouldn't just 'file' my result and that was it.  So what?  I just carry on living with prescriptions and wander along with the numbing and tingling, possibly not even associated with Fibro?  Isn't it great to just have all your symptoms just dumped in the Fibro box...

My husband said to me ages ago change Dr's.  I guess I felt like I had unfinished business with him.  I kind of did.  It just solidified to me that even today, after all the available studies and science behind Fibro that it is a recognised problem... but I guess for my Dr it isn't and it is just a central nervous system disorder that doesn't have a name.

Next appt is to see the Neurologist for my follow up, Heaven knows how long that will take!  They usually take 6-12 months to get in.  Meantime I am to increase my Gabapentin and continue with Tramadol for flair ups, Panadol for everyday pain, Omeprazole for the tummy upsets (links to FMS), GF because some of my symptoms might be from an allergy or not, and now anti-inflams for my shoulder bursitis, I am literally a walking PILL BOTTLE, anyone else feel like that LOL!!!

I know you can all relate, that is why I feel like I can type all this waffle, because I know that you will read it and I can see your head nodding in agreement because we have all or are all going through this together!

This is just another day in the life of right?  Meantime I am reading a book that I am hoping will help me on my journey, The Power of Now by Eckart Tolle!  It is calming me (yeah right you say after that big complaining blog! LOL) and I feel better generally!  The positiveness and enlightenment will make the difference for everyone who reads it!  Give it a shot!
https://www.eckharttolle.com/

How many have heard of Guaifenesin?  I don't know how I came across it but I seem to run into new and interesting stuff about Fibro without even trying... I guess there are just so many websites and articles in the abyss of the internet... I could spend hours reading about but this particular topic I found so interesting!  At first I got my hopes up thinking that there may be something relatively new to help Fibro sufferers but after reading I think every one really needs to think long and hard about what they are going to use or do to help themselves.!!! 

I actually got a bit worked up thinking this might be something to try?  Surely we have all been there... waiting for something to turn up and miraculously end the pain, sleepless nights, aching, and all the rest that keeps us in the darkness of Fibro.

So I've included the sites that might be of interest if you want to read about this - save yourself thinking that there is some science behind this claim.  I wonder how many out there have looked at this and thought of giving it a try?  Maybe it worked for some?  

http://chronicfatigue.about.com/od/treatmentprotocols/a/guaifenesin.htm
http://web.mit.edu/london/www/guai.html
http://www.fmnetnews.com/coping-resources/consumer-alerts/product-6

Some interesting pieces I took from the above were not all fairytale ideas to me... one of the things that struck a chord with me was the reference to Fibro sufferers having had neck or spinal injuries and there is a rather large percentage!  I know many who have had car accidents and neck injuries that have Fibro, and I'm one of them! Also, and this I have NEVER read before, that the left thigh had nodules and soreness that was in 100% of his Fibro patients.  I have this in particular in my left thigh, I wonder how many other people have this?  Is this common?  Well according to Dr Amand it is - what about you?


So my update of news is after waiting for many months to hear back from my Doctor about the report from the Neurologist about my nerve conduction study (2nd one I've had done), I queried it today, and the nurse called me to say, it came back normal so the Doctor filed it!  WHAT??? Not what, did he file it cause it was normal? What? He filed it?  He knows I've had 3 surgeries on my hands, without success, so instead of what next, he files it and doesn't even tell me or let me know.  So apparently I have to pay yet another doctor bill to see what to do next... I said to the nurse he better not have closed my file as it took me over a year and a half to get in to the public system to see a Neurologist, and if I have to do that again I will probably crawl under my bed, cry and suck my thumb (LOL!!!).  I do not get how if a Doctor knows your WHOLE history, just thinks it is ok for me to continue with numbing hands, restless and sleepless nights, and not want to pursue the situation further???  If I had patients who needed answers I would continue to work with them until I could find the answers, or send them to the right people who might be able to help!?  Can you sense my frustration

So I guess I really am going to have to start again with a new physician who will take my symptoms seriously and not just want to medicate me and charge me to see what the next step is... are you with me people???  I know many of you have been on the same roller coaster ride.  Frankly, I'm bloody tired of it!!!  Well I'm just tired actually Ha!

Until next time... hopefully the news I share isn't THAT old and you haven't heard of these things.  I could be boring you - mind you if you are reading before bed this might not be a bad thing!!!

So my darling sister sent me a Fitbit (thank you!!!)... and I haven't decided if I love it or hate it!!!  Why?  Well I thought that counting my steps would be good, and that part is great... but monitoring my sleep - that's a whole other story!!!  I knew that my sleep sucked, especially during a flare up, but seriously now that I see it in text as a visual it freaks me out.  To know that I live on maybe 5 hours of proper sleep and the rest is restless only confirms that those of us with chronic pain must be silent super heroes!  To do what we do with such little sleep blows my mind!!!

At first I was a bit taken aback because what it confirmed for me is that I am so used to bad sleep that it has become a part of my life, I've normalised it!  So now that I wake up and see it is true, and truer than I had remembered, so silly that I had forgotten... I feel like at least I am reminded why I am tired during the day, ready to sleep by 4pm (yet never do!)... 

I actually even woke up in the past before my Fitbit and thought that I had had a good sleep, and wondered why I was so tired... felt guilty, felt a bit bad, felt that I wasn't sure if I could keep doing this tired thing... but again, now I know that I only 'felt' like I had a decent sleep because this is what my normal is.  I also felt a bit bad for going to bed at a decent hour 9.30 or 10.00 and sleeping until 7.00 maybe dozing until 7.30 on some days... but even if it looks like I'm getting 8 or 9 hours, there's no way in fiery hell I am!  I don't take anything for sleep at the moment, and I know this attributes to my non-healing sleep.  As we all know you need deep REM sleep to heal.  What a vicious wee circle we go in.  Like a rat on a rat wheel!

Hopefully having my Fitbit will weigh more positive because I can see that I am walking lots of good healthy steps... and that darn sleep tool will just be a reminder that I need to remember to be mindful, meditate if I'm wired for sound, don't stress about not sleeping, take something if I need too (even if it is natural, there are loads of natural options for sleep) and just try to be positive and know that I'm not the only one out here going round and round on the FMS wheel! 

I now have access to my health records - through a new online option your Medical Centre can set you up for!!!  It is quite handy if you have ongoing prescriptions!  I had a look back and funnily realized well before I was diagnosed with Fibro (about 2-3 years before) I was in the Doctors for costochondritis!!!  So - I read a bit further, this is a condition all on its own.  However I continue to get told it is just part of Fibro... since I now know it is a condition on its own, and Fibro sufferers quite often get it, I treat it with anti-inflams and it has improved slightly.  

Lately I have been sore.  I have been thinking that it takes a lot of effort to have chronic pain.    It isn't an easy thing to have.  I have been reading an unrelated book but it is all about the brain and I read how we know so very little about our brain and its functions but are doing our best to figure it out - we being the scientists and in all areas 'neuro, psych, and so forth'.  

What I read that I think is very important for chronic pain sufferers, or for anyone, including people who are addicts, mentally unstable, etc is that we all process everything differently.  You with Fibro will be able to handle it differently than me with Fibro, and I don't mean symptomatically either, I mean mentally.  Why?  We all come from different places, different upbringing, different situations.  Which programs us to react differently.  You may know a Fibro person who just says 'get over it, I am', or another who says they can't even face the day... and those 2 people may have the same pain, but how they respond to it is very different.  Their pain thresh hold may be different, their mindfulness may be different.  So what I am trying to say is that we, as chronic sufferers should be way more patient and mindful of those who suffer any affliction, because we understand that no one can tell you, or judge you, or make you deal with this in any way but your own way.  

So I read a quote today I thought was so very relevant "Today I enjoy every minute of whatever I am doing".  Why not?  If you focus on the enjoyment of what you are doing, will it not distract you from your pain?  Will you feel better for reading that you are not alone in your journey with Fibro or any other pain and suffering you endure?  Maybe you have a coffee beside you as you read, and damn that coffee smells so good, and it tastes good, and you really enjoy the caffeine kick ( I know I do) or the roasty bean flavour!  Or you hear the birds chirping outside your window.  Maybe you smile now because of this tiny thought?  Or you are looking out the window... maybe it is autumn, and the leaves are turning an amazing fire red, and bright orange, or it is spring and the flowers are blooming, maybe sunshine yellow daffodils?  What a small joy to have for the day.  

Everyone experiences pain differently. No matter your affliction, your symptoms, your disease, your pain is yours, so don't ever think you are less because of it, or useless, or pointless or anything, it is how we deal with it that counts.  You count!  Think in mini-seconds I reckon, don't think of next week, or even tomorrow - think of the seconds in front of you and how you can try to enjoy every minute of whatever you are doing.

Be strong!  

Today I was wondering if there was a connection in the pain in my chest to the numbing in my hands?  I actually felt as if my chest bone was inflamed, which is not usually the case they say with Fibro, that there isn't inflammation just the pain.  I would beg to differ with costochondritis.  I tried to look back and see if I wrote about this before... sometimes I think about something to write and then can't remember if I did - I am hoping this is fibrofog, or maybe I'm just too busy!!!  So... I had a spell of  days of costochondritis (which is one of my more common symptoms) -  yes it is a mouthful and I had to google to see why this bothered me so much... apparently it is common in FMS but how common?  I HATE it.  I tell it to go away (usually in my mind ha!)... because I get so bloody tired of hurting in the chest, sometimes I swear it is heart related but EVERYONE assures me its not - God I hope not!!!  So check out a link I found out about it and discover more about what we have to go through!!!

http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/costochondritis.htm

Another link I found was related to low b12 which I do remember (whew) writing about early on in my blog.  This may still be part of the numbing and tingling I have but seems no one wants to follow up on that including my Dr and Neurologist who still hasn't been in touch to follow up on my last testing!  And so it goes... interesting links though - worth a read so you can help determine your results and whether you need to bang on at your health professional to help you on this journey with a million symptoms!  

http://labtestsonline.org/understanding/analytes/vitamin-b12/tab/test/


One thing I didn't want to do is use this blog as a complaining avenue... and I hope it doesn't seem like it... I surely just want to share what I hear and experience along the way so that maybe you can pick something up that might help you too.  Crikey, the last thing I want to do is virtually complain!  

As always, keep the chins up out there!  ;)

All up - I lasted 3 weeks without major issues... then BOOM you know how it goes... I had 3 severely disabling days, although I say disabling but the 'show must go on' and I still had to function as an employee, mother, wife, friend and person who needs to get from A to B!  My worst symptom which I have had in the past 2x now was in my shoulder!  I couldn't even lift it to reach in the cupboards -- what is up with that?  Where does it come from?  Why the shoulder?  I didn't even do gardening!!!  (unless I was sleep gardening!!!).  Of course my groin and hips felt like they immobilised me... as well but I suppose after so many years of having this I wonder if I actually downplay the pain?!  Does everyone do that?

Something I came across that truly annoyed me were some old blood tests that reinvigorated my concern about my autoimmune health.  I am sure  I mentioned ANA (anti nucleor antibody) testing in past posts, but this time I really looked into them and found that there is some interesting website articles by rheumatologists that confirm that Doctors don't understand the results!!!!!!!  So here is a summation of what I read that relates to my results.  I had 3 tests all up.  I had an ANA speckled positive result of 1:80, and another one nucleor at 1:320 and another one at 1:640.  My Doctor and the rheumatologist said my results were a red herring, meaning many people test positive.  However this is true and untrue!  This is where I got annoyed after reading the truth in all this.  Many people do test positive at 1:20/1:40/1:80 and 1:160 maybe ... almost up to 30% of people - and this is known as a red herring for an autoimmune disorder/disease.  I then went on to read that rheumatologists say those that test from 1:320 upwards should be retested as a matter of course, this is the cusp he reckoned where there should be a concern.  Then goes on to say if you test 1:640 there is more than likely an autoimmune disorder/disease and that a close eye should be kept on the patient!!!!!  Regular testing and continue to search for a possible diagnoses.  My initial reaction to this was WTF (yes, sorry about the txt speak swearing!) and how come I didn't get more concern from my Doctor?  Crikey?!!!  He brushed those tests off, or he didn't understand them.  I recently had one done again last year that came back negative but all that means according to this website is that I don't have ELS (Lupus), and because I didn't test while I was having a flare up - a negative result would occur.  Which I didn't know at the time and wished I had done my test during a flare up!  I am telling this story because I reckon most of us are brushed off with the 'red herring' comment.  It would be interesting to see what kind of results Fibro patients get on ANA tests during a flare up?!  When will someone actually claim that this is a real chronic pain syndrome and that it is not 'just fibromyalgia'!  Which leads me to this article I found coming up in my blog!

I usually don't have to search out articles that might be relevant, a lot of the times I hear about them it seems almost by accident!  I guess I alway have my ear to the ground, but maybe I do more than I realise... I found an article that isn't probably new info for people who have had Fibro for a long time but it is an informative site to follow.

https://paindoctor.com/mental-health-concerns-for-fibromyalgia-patients/

The good news is this last flare up I had that was really bad only lasted 3 days, and like I said to my Osteopath, in some ways I'd rather have 3 hard days then several middle of the road pain days, those just seem to go on and on and if you have pain at night it makes for a week of long miserable days of pain but also being very tired (or groggy) depending on what you are taking for pain!

Good luck out there everyone!  Make sure that you try and talk to your friends and family about your pain, it is better out than in, and even though you think you are whining - it doesn't matter, it is healing to talk about anything that bothers you.  Rest, eat well, exercise when you can, drink plenty of water, have fun, love yourself and your life.  Until next time...

I meant to post this last time I typed!  I got a link from my sister about Magnesium deficiencies + Fibro!  However, there are lots of studies suggesting it is a possible reason for misdiagnoses and also a possibility that is can help with symptoms when you supplement it in your diet.  So I had a google and there was some good links - this one below seemed informative, but I would just consider it and maybe talk to your Doctor or Osteo or Naturopath, or whoever you speak to about your health and diet.  I heard this info years ago from a friend who had Fibro for 10 years and I was only about 2 years into no one know what the heck was going on, and remembered that it is important for us to make sure we have the right foods that include magnesium in our diet daily.

• Dark Leafy Greens. In the nutrition world, dark leafy greens play the role of the ultimate superfood, offering up crucial vitamins and minerals as well as a host of health benefits. ... 
• Nuts and Seeds. ... 
• Fish. ... 
• Soybeans. ... 
• Avocado. ... 
• Bananas. ... 
• Dark Chocolate

Just google Magnesium Rich Foods!

http://chronicfatigue.about.com/od/exercisenutrition/p/magnesiummalate.htm

On a continued happy note I am still mostly just having mild symptoms and I am ever so grateful!  I have had some deep groin aches, and I continue to wonder if this is really a Fibro symptom.  I don't see it as a common symptom?!  Maybe someone out there suffers the same?  Maybe someone has an idea why this symptom plagues me almost more than any other symptom?!

A wonderful friend of mine has hurt her back (been ongoing for years) but this time she was telling me some very familiar symptoms that I wish and hope and pray aren't the trigger for Fibro!!!  It doesn't sound good but I remember my journey started with a back injury (very sad face!) and I so want to now seriously look into the connection between triggers and Fibro.  Lets put positive thoughts and energy into all the friends and family we have that they don't ever have to endure Fibro!!!

It's been so long since I have had such long reprieve from the stronger symptoms of Fibro (2.5 weeks!), I have been so pleased without the regular aches and pains I can't explain how good it feels!  These are the days we have to live life to its fullest!  To feel what it is like for most people.

Even though I have some mild symptoms that last for a few hours, I look at them as little reminders not to get too cocky! Like believing that I will be done with this, because that is the tricky bit, it won't go away, there is always a chance for a flare up... but I can still be positive about it!  To hope it lasts for as long is it can!  It is the small things isn't it?!

I have a few other links I have found to post - but will do later tonight!  Keep your chins up out there!

Hello all the people who are interested in Fibromyalgia.  I can't believe it... I had 5 sleeps undisturbed, non painful, no fire in my blood, then 1 night when a storm came through where I couldn't sleep at all... then last night a sleep from 9pm-7am, literally perfect!  What the heck are the chances?  I haven't been here in YEARS!  What does it mean?  Out of the blue?  My husband said, "what have you done differently?" - nothing!  Did I eat differently?  I don't think so?  I know one thing for sure is that I slept, and that makes a WORLD of difference.  Proper sleep makes me feel real, makes me feel like I can cope, makes me feel like I don't have fibromyalgia - I know... don't get carried away right?!!!  Ha!

So today I wanted to type about my sisters ridiculous journey with the health professionals she has been dealing with.  I know for a fact the first thing they do is look at her age!  She is young in their eyes, so first off they pre-judge!  She is 36.  And for years she has struggled for anyone to take her serious with her health issues.  She has all the symptoms of Fibro.  All of them!!!  One doctor, the one who got everything else wrong said she probably has Fibro, but she went to a Rheumatologist who didn't even mention it.  It wasn't even part of the discussion!   Yes she has arthritis, she also has about every other single symptom Fibro has listed... the unfortunate thing is she seems to either have CFS as well or a good mix of both... but age seems to continue to be at the forefront of all of the health professionals minds.  Anyone can have FMS!

I am a bit worried about our eldest, sometimes out of nowhere things hurt!  Her shoulders, her back and sometimes her hips... I don't ever want to suggest it!  However, as a teen she is keen to say it... maybe I've got Fibro mum - eeek!  No, please no, oh dear Lord no!!!  I don't want to think she has, she is definitely the personality type who wouldn't do well with an early diagnoses.  She is not like me in that way... I am probably still slightly in denial... and I struggle not to be - but that is only because I don't want to have it.  But who does right?  I have been reading so much lately about Fibro and all the relative issues with being positive, having a good mental attitude, and so forth, and I am a huge believer of all of this, and now science says so... so I will continue to keep my thoughts bright and positive so my telomeres get longer or stay long and my cytokines stay in check!

An article I recently looked into was about Fibro and the heart.  I don't want to introduce any bad news on this blog, but studies suggest that heart disease is higher in Fibro sufferers... Whaaaat?!  I told me sister this, well actually she sent me an article I didn't understand and I googled what it actually meant and found out that that gobbledy gook was a direct relation to how Fibro affects the heart.  Um YIKES!  It's just good to be aware isn't it?

http://fibromyalgianewstoday.com/2015/03/02/patients-with-severe-fibromyalgia-more-at-risk-for-cardiovascular-incidents/

I don't necessarily think it will be the case for any or all of us... but I know that I don't want to be brushed aside by my Doctor when I say I have chest pains, and he thinks it is just the muscles around my chest that are causing pain!!!

Be positive, and remember knowledge is power, including finding out as much as we can about our disorder!!!  Good luck out there.  Rest well and take care of you!

Last time I posted info about cytokines!  And I think I'm on an accidental role... I have just read a very related article in TIME, Feb 23/Mar 2, 2015 - and I have only just started looking into Mindfulness - this is my new interest for 2015.  Maybe it will be yours too!

Interesting articles regarding cytokines and fibro!!! Heard and read a lot about this lately, interesting reading:

http://www.medscape.com/viewarticle/470556_8

or just google Cytokine + Fibromyalgia and you will find a plethora of articles!

Just don't read these when you are tired - LOL, they might put you to sleep.  Actually read them when you wake up at night and can't get back to sleep - hey I found the cure ha!!!

I've been going to an Osteopath for awhile now.  I realize how important this type of therapy is to me!  I do find great relief with a weekly to two weekly visit.  Depending on what country you live in, it could be covered under a medical or insurance scheme, so you could be lucky there.  In some countries - too bad so sad!  I live in one of those countries.  My Osteo is amazing though, he's given me a great 'deal', a savings of $10 which is better than nothing and very appreciated.  Mostly because it does bring me some relief.

Originally my Dr (yes the one who said the ever famous "I think you might have a bit of fibromyalgia" - still cracks me up!) didn't even suggest going to an Osteopath for my muscular skeletal issues, but I kept going back with chest tightness, so after quite some time (like 2 years) he had a thought that it might do me some good - thanks Doc!

I have to say I have never looked back.  You have to find a good Osteopath though, one that understands chronic pain, and actually believes that Fibro is a true syndrome.  I ask him questions all the time about this kind of pain, and he is very honest with me.  He says there aren't a lot of answers to why, but they do know that you have to do whatever it is that works for you, so keep trying.  If osteopathic therapy works, do it, if swimming works, do it, if meditation works, do it.  But try everything until you come up with what works for you (bar hardcore drugs of course!!!!).  Although I am sure many have been driven to it!  I'm guessing Fibro in prison would be a tad worse than Fibro out of prison!

Some days when the myofascial pain is very sensitive particularly around my hips and thighs or my shoulders, my Osteo still works on this areas but incredibly gently, because he understands this kind of pain.  I really believe that if someone didn't understand it they wouldn't be so considerate.  So I have to say I hope that I don't have to go forever, or we'll be really broke, ha!... but I will keep going until I can have at least 4 weeks between without feeling that I can't be without.  I usually make a major effort to go right before a work trip so that I have that relief for that time I'm away.  I'm sure that it is my one thing that I won't give up for quite some time.  Thank you my wonderful Osteopath!

An interesting article:
http://www.medicalnewstoday.com/articles/70381.php

Might be worth a try fellow Fibroees!

So, I've been taking Gaba for a year now.  Ok, so some relief, and strangely when I have maybe accidentally forgotten to bring them on a work trip or just forgotten which maybe has been 3x ever, I felt pretty rough.  What I find very confusing is whether I just felt rough or I felt rough because I wasn't on Gaba?  So I had a look and found this quite interesting website:
http://www.drugs.com/comments/gabapentin/for-fibromyalgia.html
I thought 7.2/10 wasn't so bad and it is great to have some other comparisons i.e Lyrica and Cymbalta (both of which my sister has taken/tried) and had various results.  At least I can see feedback and how other Fibroees feel on the different drugs.  All I know is that I can't be in a zombie state, and I won't ever go back to that again.  

If Gaba is meant to assist with removing the numbness and tingling that hasn't fully worked.  I still struggle with this mostly in my hands... and wonder if this is part of Fibro or something else or something more sinister? (da da daaaah!) Lately though I have had some serious 'fire in the blood' which normally affects me mostly at night, now it enters my daytime life which I am not too impressed about!  I'm supposed to see my Dr again, and have been waiting to hear from him to say he's had contact from the neurologist but find myself imagining myself as a dusty, web encased skeleton before that ever happens!  Does anyone else feel like that?!  Part of me is being stubborn and thinking I should just wait, part of me thinks, here we will go again and I will get noncommittal info, more drugs to try, and more appts or more tests.  Do we all just keep going back to hear that there isn't enough info about Fibro and just keep doing what you're doing?  I dunno?  

My sister had her Rheumatology appt, and another disappointment for her, and I remember going to appt after appt with disappointment after disappointment - ha that is actually funny reading it again, I'll keep it there to see how many giggles I can get!  I wonder what the history of that word is... so I guess she went home and slept she was so upset and was once again frustrated, I don't even think she got a Fibro diagnoses? But after telling her she didn't have arthritis he doubled her Celebrex? (Oxymoron?!).  Also maybe she should walk with a cane, exercise more, eat right and lose weight, which she is constantly doing, her foot goes to the gym more than my whole body and she's 6 years younger.  I tell her that is why she has so many problems getting help, because most Dr's and specialists don't think younger/ish people can have this much wrong with them!!!  I just don't get it and it makes me sad and frustrated for her, as much as I am for me but more for her because she is young and doesn't have a supportive partner!  That is a big deal!  I reckon it can be the difference between getting through each day sometimes!  Find all the support you can get, be good to yourself and keep staying positive!!!  

As I was driving home today I heard this incredible news, the renaming of Chronic Fatigue Syndrome - and why?  Because too many people make fun of it?  Or it lends to the idea that people are lazy who have it???

http://www.npr.org/blogs/health/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it

https://www.yahoo.com/health/finally-chronic-fatigue-syndrome-will-be-taken-110728406317.html

http://www.dailymail.co.uk/health/article-2949369/Chronic-fatigue-real-disease-Doctors-draw-new-guidelines-diagnose-condition.html

Interesting reading!

Today I thought I would write about itchy and scratchy - um, yeah that sounds a bit rude... but I was reminded the other day that you can never be sure if there is a bug about!  When I first experienced the crawling sensation on my skin, I was laying in bed trying to relax and wait for the twitchy muscles to stop doing their thing... when it felt like something was crawling on my legs, so in quite a hysterical moment I ripped the covers off to find... dah dah dah.... nothing!  This daft scene repeated a few times, and I wish I could say I fell into a heap of laughter - no I didn't - I thought 'REALLY?', is this another thing I have to add to the strange and almost delusional seeming things one calls symptoms, of this confusing and unusual syndrome!

How about the times where you think you have been bit by a bug, just a pinching feeling, and you really are sure it is a bug?  Yeah, well, I have gotten myself into a bit of a state because I was so annoyed with feeling like this - and I have to be careful as I am allergic to many bugs and nearly always have a reaction to them.  So as annoying as it is I have to look down to my legs to see nothing biting, nothing pinching, nothing nothing!  Just my body playing tricks on me.  I remember reading these symptoms (before they happened to me) and I thought it was ridiculous.  But quite often I'll have several days in a row where I feel like my body is being bitten, being crawled on, being irritatingly tickled to find the ghost bugs of Fibro!  Excellent!!!  I'm sure many of you can relate?!  I know its not the worst of it but jeez what a terrible trick to play (said to God or the higher powers above!!!).

Going back to the twitching...  When someone talks about these symptoms individually you might hear someone say it doesn't seem so bad... or if they read about the symptoms and it clearly says not everyone gets every symptom, and or they can be at different times etc, they might think its a small problem.  However - imagine laying there, with muscles twitching, skin crawling, blood on fire, joints killing, restless and unable to sleep, possibly with a headache on those really miserable nights, oh yes and add on the numbing parts if you have them, and BINGO you get a deliriously ridiculous state of affairs!  And one wonders, what to take for them, surely you've been given a list of all sorts from the Doctor?!  Do you feel like a walking pill bottle?  My husband says he's afraid to hug me sometimes because I rattle so much (ha - nah, I really do get lots of hugs!)... but I get what he is saying.  

I have a nurse friend who always asks how I am feeling, and I think she is amazing and wonderful.  I always wonder if she tires of hearing me say I'm alright, this week was a good week, or not (during nasty flare ups).  At least we have sleepless nights in common and share our stories of sleeping pills or muscle relaxers.  I am sure you all have these stories too!  Aren't they fun?  What works best for you?  What doesn't work?  I've heard of constipating stories, zombie stories (that one is mine!), thirsty stories, and all sorts.  It's rather hilarious not to be drug addict and be talking about pills all the time!  

I guess it's just nice to know that there are other Fibro-ees out there that might just know this awful sensation either of creepy crawlies or twitchy nitchy all the live long night (and sometimes day!).  

It may be that the feelings aren't as intense for me now... I know in my last excerpt I said I started Gabapentin, and although the feelings haven't disappeared I think they may have lightened somewhat - although - I can't be sure because sometimes it still feels like there are mega electrical switches being attached onto all of my muscles and soft tissue and they are doing their own thing despite what I want!  So maybe it is a matter of time, or maybe that is all Gaba will do, lighten the intensity... I'm never quite sure because this is the 3rd different prescribed drug that I have taken and I guess I question what is next?  What if this isn't the one?  Dare I try another?  I guess happy drug hunting to all of you!

Off to do some pruning - and I'm hoping tomorrow my body doesn't rebel for it!

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...