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!