It's been a bit!  I haven't blogged mostly because life has gotten in the way!!  Also, I was incredibly 'out of it' with managing my pain on top of life itself... trying to see through the fog and wondering how I was going to get through the 'fire in my blood'... or what feels like constant bone pain during my nights!! 

I was intrigued by a fellow bloggers post a couple weeks ago, from http://www.fibrobloggerdirectory.com/ regarding studies that were done on families and their members with symptoms that seem to be similar to mine... this was a genetic study with links to Tryptase causing these issues.  I was SURE, beyond SURE that this was my problem, so much so because my sister had symptoms on the list as well, it was beyond surreal, I seriously was 100 percent sure I had my answer!  

So off I went to the doctors, request in hand, for a Tryptase test!!  I went away, smug that I had diagnosed the 'true' reason for my pain and suffering.  I waited a couple days and would you believe it??????  I had normal Tryptase!!!  I was dumbfounded because I was so sure of the symptoms matching, and I wanted a diagnoses that I could understand, that I was more sure of.   

Can someone tell me why I can't be ok with a Fibromyalgia diagnoses?  Is it because there is no 'testing' that can be done?  Why I am skeptical?  In my gut I feel like they've got it wrong, and they have just put me in this Fibro basket... and they are going to miss the real reason for my demise!  I say demise because I imagine 'it' will ultimately consume me!  I do carry on with life, my normal, very normal life.  Very few people know of my condition, so much so that my neighbour and I were talking (we've been neighbours for 11 years) and I just mentioned something about being sore... she said "why's that?"... I guess I thought she knew for some reason and I said my Fibro is flaring... she literally laughed, and said "YOU?", "You have fibro?"... usually people don't have a clue what Fibro is... So I was surprised a) she even knew about it  b) she laughed.  Then she explained, and I understood why she found this so amusing!!  Her husband's niece has Fibro, and she obviously has a different set of symptoms, so much she is housebound and lives basically on her computer.  I explained that everyone responds differently, some people are very open about their condition, me... well I don't like pity, or people feeling sorry for me, and I know if they Googled Fibro they would treat me a whole different way!

I feel bad for my neighbours niece, and I know that some people have different pain, and different pain thresholds.  I think that maybe suffering in silence isn't a great option, as I choose to do, and cry quietly about the deep aching my body is terrorised with.  When I turn off the lights at night and hurt, and don't sleep, and shift at least 100 times to get comfortable... As my readers know, I have tried all sort of prescriptions to help alleviate the painful symptoms without too much avail.  How do people cope?  I wonder what the ratio of those that just stop and accept, and can't continue as usual, to those that don't stop and carry on pretending that this is normal.  Well, I guess it is my normal.  I guess I feel if I stop I will get ravaged... and become the person my neighbours talk about... that don't 'seem to be fighting' this thing (don't get me wrong I know you are...), but in comparison my neighbours incredulous gasp at the fact that I actually have Fibro and she's lived beside me for so long and didn't know!!  She wondered why I don't have canes, or assisted walking devise?  Why I don't go on to social media and tell everyone all the time how bad my pain is, how bad life is with Fibro, how come I don't say 'feel for me I'm suffering'...!!!  I don't know.  I guess I feel like if I admit it, outwardly, it will be true.  I guess I don't want it to be true.  Maybe that is why I keep searching for answers, and a different diagnoses, that has 'tests to confirm', or medication assigned to the disorder, that helps!

Fibro people... all sorts... those bedridden, those housebound, those who have lots of flares, those who don't have many flares, those who admit it, those who don't... the only people who will ever understand it, are those that suffer from it! It's a huge challenge but just know that no matter what, you will get through it day by day!  Just knowing there are people thinking about you, sending positive energy, even those who don't know you... should help us see this thing through.

Go well! 

There are two things on my mind about fibromyalgia:  Melatonin and Genetics.  So I've been investigating and looking.  Why?  

Well I'll start with Melatonin... recently I was collecting a prescription and had a chat with the pharmacist about natural remedies for sleep.  As we all know sleeplessness, or restless sleep, or disturbed sleep is a common symptom of fibro, and I haven't had the greatest experience with solutions for this.  I don't particularly like to take sleeping pills or muscle relaxants - the result is usually me taking half the day to come out of a funk, and not being 'all there', and quite often I can't be in that mode as I do a lot of driving in my work... and parenting... oh how our daughters LOVE to take advantage of that... ha ha!  Conducive to them getting all they want, and me ending up with empty pockets, rides to school, lunches with chocolate and so on and so forth.  I'm beginning to think they like having a fibro mum!!  Sometimes they do forget and punch buggy (the car spotting game) turns into a bit of a nightmare!  Poor me gets the double whammy, tears, and then "oh my mum, oh my God, I forgot"... you know how it goes.  They seriously do feel bad, and later we might laugh, but at the time - OUCH!!  Anyway, I digress, sorry!!  

So... I came home from the chemist and did a serious Google session on Melatonin, and this naturally occurring hormone is available, and it's all about the sleep, which is what I need.  Have a look, if you are in the same predicament as me... today I pick up my prescription, but the thing that gets me going is, HOW LONG HAVE I BEEN SUFFERING???  HOW MANY TIMES HAVE I SAID I NEED SLEEP???  HOW MANY TIMES HAS MY DOCTOR NOT GIVEN THIS AS AN OPTION?!!!  He knows that I really don't want to take anything, and I would prefer the natural option... you'd think Melatonin would pop in to your head as a doctor dealing with a fibro patient!  It is seriously all over the chronic pain sites and fibro sites as an option.  Oh, by the way, thanks for letting me bleat!  I love having this outlet, but I also hope it helps before any of you get to this position, maybe it will help you before you have tried everything else under the sun like me!

I look forward to great nights of sleep over the next few days, and I will keep you posted.  It might be the answer for you!  This is just one of the sites I came across which links to other studies etc.:
http://nationalpainreport.com/fibromyalgia-does-melatonin-help-8827220.html

Next up: Genetics.  Wow.  Some seriously interesting reading here.  As you know from my previous blogs my sister has fibro (semi-diagnosed from her Doctor, she hasn't been able to get a referral to a Rheumotologist YET).  We think our mum may have had it too but it wasn't seen as a disorder in 'those days' and unfortunately she is no longer with us, so we can't quiz her about it... speaking of disorders, did you know that fibro is officially known as a medical disorder now due to the fact that they have found genetic factors in DNA!!  I read that during my search on info regarding genetics and fibro.
As taken from an excerpt from a link in the link below:
But now science proves them right. And it is that medical geneticists have discovered that fibromyalgia is a disease of neurological origin, the result of neurochemical imbalances in the central nervous system.

fibromyalgia + genetics

Here is an excerpt from one of the links in the link above:
Fibromyalgia & Genetic Research

In June 2015, a study was published (Inanir) that suggested a variant (called a polymorphism) of a particular gene may be related to the development of FMS.

It's called the ACE I/C polymorphism.

Multiple studies report that certain genetic abnormalities are linked with the condition. They'll often be linked to a symptom or cluster of symptoms, but we don't know whether the variants actually cause FMS.

So... what I gathered from it all is that there could be a genetic factor in family clusters, but here's the thing, it seems it can be passed on but there are other factors as well, like environmental etc, and you can pass it on but it may never be triggered.  So it may not turn into FMS.  Check the link above out, read it for yourself, it is very interesting and what I got from the studies is that it is more common in familial clusters ie. 41% chance of sisters (in one study) having it for example.  I gathered there was 26% passed to children (same study), but again it is all very complicated and I would take the time to read the studies in the links above to gather your opinion on it.   It makes a lot of sense to me in particular - there is a strong correlation to neck/spinal injury, PTSD, IBS as factors as well.

No matter what, it seems fibro is being taken a lot more seriously as time goes on.  It seems that scientists are really trying to find the answers and connecting the dots.  Who would have ever thought... before I was diagnosed I had never heard of it!!! Imagine 2% of America's population are diagnosed by 20, and another 8% by 70.  I feel more optimistic than ever now, reading the studies that are being done, and knowing that people are serious about this condition, now disorder, and that in time there will be more knowledge on how to make it easier, and possibly even have a test for it (which I have also read is a possibility now!)... so stay positive, stay enlightened, stay mindful, and remember we as chronic pain sufferers are all in this together!! 

My two favourite definitions I have found of pain are:
* cause bodily suffering to
* cause anguish or make miserable
And the definition of chronic:
* being long lasting and recurrent, characterised by long suffering.

However, pain as a definition is truly not defined just by those definitions, and what I sometimes do when I have chronic pain, and am laying awake 'in it' I try to think of how I would describe it.  I know I have done this before in one of my past blogs, but it plagues me to try to define it, so other people can understand it!  Don't you agree?  Don't you want to be able to explain to people, without them having to suffer it, how it feels exactly.  Sometimes this helps me get back to sleep, ha!  Boring my brain with how I would describe this bodily suffering, this anguish that can make me miserable.

I have also said in past blogs, that I would not let it make me miserable, so most of my anguish is held, in my mind, and in my mindfulness.  How do I do this?  Well I do talk about it, but I don't want to be whiney, and I don't want to go on and on, so I find that if I try and describe it to myself it makes me feel like I am digesting it, if that makes any sense.  I question "what does that feel like?", I ask myself, "is that mild, or harsh?", and so on and so forth.  After time and after years of having this condition I often wonder if this pain is bad?  Maybe I have gotten used to it and normally it would be incredible pain for someone else as a one off?  Or maybe it would be mild to yet another person?  Do I really know how bad this pain is, or how mild any more?

Recently I had a neck injury, not spinal or anything, but somehow pinched a nerve which reacted and caused muscle spasms and hardened the muscles, that to me was incredibly painful, but worst thing happened, it triggered a flare up, so it was a double whammy unfortunately.  So as I was barely able to turn over in the night, and flaring at the same time, and trying to describe to myself how I was feeling, I did come up with a description I thought was rather different from my last... quite simply put, I was thinking of dull nails, being hammered into my joint, not fast and hard but slow and deliberate... and the resulting ache that just held on like nothing else, sticking and purposely not letting go.  Harsh and heated, the ache continues, too much to let me sleep, so I would just lay there and absorb it.  I don't really know what else to do, I don't really like to take 'even more' painkillers, so I tend to leave that to the absolute last resort, frankly sometimes that is not the best choice.  It can take a long time to go back to sleep, even a restless sleep, while a ponder the pain and my threshold.

I often wonder if I am the only one who does this.  Do other chronic pain sufferers labour over the feeling of what they are going through?  I won't let myself get depressed about it, I can only ever remember one time through all of this that I couldn't muster the will to go on, but it didn't last long, I have every reason to be here in particular my family! Of course there are people who are far worse off, not that that is a consolation but it makes me stop going to a dark place that many Fibro sufferers go.  I can at least be thankful that I do not suffer this symptom.  Mindfulness books and quotes from other bloggers are always helpful, and it really makes a difference knowing one isn't alone in all of this as I have often said.

The best days are the days with minimal aches and pains for anyone.  But especially so for FMS sufferers - am I right?  So I hope for those days most of all, and hope for answers, and hope that other people who are worse off have better days too.  "Wake up and smile, and tell yourself today is your day".  I'm not sure who's quote that is but maybe it will help.

Today I had a wee bit of time to have a look around at the latest blogs, and Fibro sites, and I came across many that had one core element that flowed through all blogs and sites... this will be of no surprise to you, as it wasn't to me, but found it reaffirming that we (chronic pain sufferers) are all in the same boat.  Do you want to have a guess what that core element was?  Now's your chance, before I tell you!  I'm so curious how many of you guessed it...

It was well and truly the 'inconsistency' of this syndrome.  The surprise element.  The fact that you don't know if you are going to sleep well tonight, hurt here or there, all over, or not, feel extreme pain, or light pain, aching or tingling or both, will you have my favourite symptom of what feels like 'fire in your blood'?  You don't know if you will feel well enough today, tomorrow, next week or next month.  You don't know if you will be able to present in a meeting without brain fog, or will you struggle to find the words?  Will you rest well tonight, or lay awake urging yourself to sleep?  This seems to be the core element, the consistent inconsistency of this major illness that affects so many.  I for one after years of having it still can't get my head around it.  I know that it pounces, out of nowhere, like a young kitten and a moving string... you don't know when it is going to hit, or how hard.  What a life!  To be a Fibro sufferer is to be a person with stamina for the unexpected.

I was sad to hear a very good friend of mine from my home country has recently been diagnosed with fibro.  We hadn't been in touch heaps over the years, but she is like a niece who has always been there, in the background living her life and being successful in business and as a mother.  She is in her early 30's and all I can think of is her journey in life now, with the knowledge that a) she really doesn't know what is ahead with this illness and b) that she will be able to cope, but she won't feel like she can right now... I told her that it took me a few years to actually get my head around the truth of this illness, it took me that long to stop denying it and looking for other answers... (and I still have my moments!).  I wish for her, that she will be able to still have a positive outlook considering the super inconsistencies associated with this illness, and know that one thing for sure is she isn't alone.  Sometimes trolling through the internet is the worst thing  you can do, and sometimes it is super helpful.  Depending on your mood and what you are looking for.  Which is exactly why I originally started this blog... so I hope that she, and others who are new to the life of chronic pain, or fibro or anything along the lines of... will find that reading about others and their journey is so helpful, it shows that you are not alone, it shows the varying symptoms, trials and tribulations of the sufferers.  

There was one link I found that was rather interesting and informative with many links to other documents and sites, I thought I would share with you today.
Hopefully you find it useful or informative too:
http://www.uptodate.com/contents/fibromyalgia-beyond-the-basics

Until next time... try and sleep well, eat well, be mindful, take good care.

My biggest hate of chronic pain... is... false hope!!  I cannot STAND the ups and downs of this bloody syndrome.  Don't you think?  Why does one have to have moments of wellness?  Is it to make us feel better for those moments of illness or pain, or whatever you suffer?  Is it purely to know the difference between good and bad, pain and no pain, ups and downs?  It is a cruel trick is all I can say.  I get duped every single time!!

I recently started Celebrex as you may know.  And yes it has helped... and I had a spate of feeling brilliant, and I was duped thinking this would be it!  I know that chronic means consistent, and continuous, but I always think when I'm feeling better that this is it!!!.... Forever the optimist, has its downfalls. I didn't think that I would feel fire in my blood again.  Why?  I don't know.  I thought that I had found my answer.  My drug.  My somewhat positive sway on my chronic journey.

Maybe I'm being selfish, thinking that it would work indefinitely?  I know, I know.  It is a flare up but because I was sure that this was the answer it was so unexpected... I actually was in denial.  I was telling my husband "I don't know what's wrong", "I feel tired", "Maybe I'm coming down with something"... ha yeah right.  No - it is the dreaded flare up.  The fire was back.  Nights of laying there thinking this too will pass.  And yes, over time it does but it still doesn't feel good while it is happening.  I guess the power of the mind truly does have its time.  After a couple months of feeling quite bloody good, believe it or not I guess my mind allowed me to forget, and the pain was new all over again.  It took me a week to figure it out.  Oh yeah, I have fibro!  Sheesh.  What a surprise!!

However, things do get put in perspective don't they?!  I recently started reading another mindful book, and yes, it does help.  Now I acknowledge the pain, the aches, the twitches, the soreness, and I accept that this is what it is like, and it seems once I acknowledge it, it is much easier to deal with.  So there is some sense in it for me, there is some hope for me, there is something in accepting that it could always be worse, right?  I say to my pain "I can feel you", "I accept that you are there", "I acknowledge you", and "I am moving on from you".  I reckon everyone should try it.  Its almost like if you say it, or even think it, yes yes dear, the old familiar fire, I get it, you are there, and you are annoying as hell, but I'm stronger, and bigger and braver than you, so there!  It is all I can offer at this time, I guess that is why reading anything I can that can help I will!  That is why each of us who reach out with a blog, or with a helping hand, or words that can support anyone else with chronic pain, it is worth the time that you do!

Grab hold of that pain, give it a shake, acknowledge it, accept it, and move on.  We can all get through it together, no one knows better than chronic pain suffers how it is to look ok on the outside and feel like a bag of 'you know what' on the inside.

Thanks for all the helpful words and sharing of journeys out there!  Brave on people!

As I mentioned in my last post I was having severe pain and aching in my joints, particularly in my left hand.  In past posts I also mentioned my sister suffers from chronic pain, and we both have a lot of the same symptoms, so she knows my journey... when we were last together she was off medication as she was about to have a hip replacement surgery, and she said to me she could feel severe difference in her pain when she is off her medication, which was Celebrex (which is commonly prescribed for arthritis):

What is Celebrex?

Celebrex (celecoxib) is a nonsteroidal anti-inflammatory drug (NSAID). Celecoxib works by reducing hormones that cause inflammation and pain in the body.

Celebrex is used to treat pain or inflammation caused by many conditions such as arthritis, ankylosing spondylitis, andmenstrual pain. Celebrex is used to treat juvenile rheumatoid arthritis in children who are at least 2 years old.

(as copied from www.drugs.com/celebrex.html)

So I thought this would be a good opportunity to book in to the doctors, and have a discussion about my knuckles and see what they thought.  In past I was worried about rheumatoid arthritis as my anti-nuclear tests have come up super high in past but recent tests haven't... in all my reading this apparently can be common for even those with arthritis, it is so very difficult to diagnose.  

So I booked in to a different doctor than my regular doctor but at the same centre... she is lovely and was the originating doctor to suggest I had Fibromyalgia.  However, she is a bit of a naturalist in that she always suggests natural remedies, I told her 'I have tried and continue to try natural options' but I would really like to try Celebrex as my sister has huge relief from it'.  She said she gathered I must have a bit of arthritis, but not the rheumatic kind.  So she gave me a cream for topical pain (Capsicain) which I would try in conjunction with Celebrex (she gave me a week prescription!).  Well... within 2 days I felt better than I have in years!!!  Normally I struggle for at least an hour in the morning to move, to get up and to bend and so on.  Like someone 80 years +!  It was not fair.  Celebrex worked instantly, which only confirmed to me that not only have I got Fibro, I have arthritis probably in my low spine and left hip (just like my mother did), and Fibro no doubt has been triggered by this many  many years ago.  I literally felt like a new woman!  I thank my sister daily because I cannot believe what relief I feel.

So, I got a renewed prescription (which does cost unfortunately, some countries it is subsidised) and I've been taking it for about a month and I will never go back.  The downfall is that it is an anti-flam and I do have issues with stomach pain and have had to take Omeprazole in past... but so far so good, this one seems to be very mild as far as stomach upset/pain, and I haven't had to take anything for stomach pain.

The Capsacain however, I ditched using that after the first 3 days!  It didn't really provide relief, in fact it burned my skin... and you have to be incredibly careful as if you get it anywhere sensitive (eyes, corner of mouths, soft skin - anywhere... yes anywhere!!!) it hurts like hell.  Not saying I put it 'anywhere' but it stays on your skin and there are many opportunities to inadvertently touch anywhere throughout the day... and it isn't pretty.  Go where you may with your imagination here but just be safe!  LOL.

So where does this leave me now?  Still not 100% nor do I ever expect to be, but to be able to function at 80% pain free is a HUGE bonus, and the experience of 'fire in my blood' has been few and far between believe it or not... I know that I have had one experience in the past month, from at least weekly in the past... how can I not be thankful for that?  I continue to experience numbness in my left hand/wrist/pinky & ring finger, and the aches in my joints of my hand are their worst at night, and continue to be mild to moderate sore during the day.  I can only think this is still arthritis, and that Celebrex can only do so much, it is still better than it was...

I'm am not saying that this will work for you, but I really think that some sort of arthritis has been a trigger for me and having that under control obviously seems to help.  Celebrex has been an answer, and no doubt if your trigger is the same and you have had arthritis pain or suspected even, I would talk to your doctor and see if it can work for you.  I hope with my stomach issues of past it won't have an adverse affect, and I don't end up with some of the side affects regarding the lining of my stomach, but for now, I am enjoying moving freely and with less pain than ever in the several years... it is a risk I have to take right now.

Good luck out there fellow chronic pain sufferers, it isn't an easy life, but remember we are all in it together.

It's been awhile!!
Mostly because I've tried to find the time... Between having a job, studying (yes I'm a crazy gal!), being a mum, and a wife and having chronic pain!! Yeeeeeehaw!! I'm at a crossroads and thought why not change my life, it distracts me from the pain sometimes! Oh. And also travelling to see unwell family on another continent keeps me busy too...

Speaking of travel, this is the worst my body was affected over the years, I felt everything 100 fold, so I suppose I'm guessing fibro gets worse with age?! I haven't read too much about this when I have been looking. Probably on top of regular travelling issues like swelling feet fibro has a great ol'time deep down in the system, digging to the depths into the pain thresholds--seeing how far it can push. It sure took its toll on me and I think I'm fairly young for all that jazz!

I'd like to share a link my sister sent to me as I recently told her I think I either was misdiagnosed or have have another chronic disease to contend with... Why? Well about 8 weeks ago my knuckles swelled and began aching particularly at night -- I was able to remove my rings (with difficulty, and oil!! Lol) and have never been able to put them back on... I still have one on but now will have to have it removed probably by cutting it off!!! Tragic. So I started looking up what else besides the obvious arthritis... Turns out many rhuemo arthritic patients get misdiagnosed with fibro all the time?!! Even with testing early on Dr's write high results as red herrings... So since the knuckle swelling my other hands knuckles and sometimes my foot ache and cause me severe discomfort... So this leads me to this link:
http://www.prohealth.com/library/showarticle.cfm?B1=FACEBOOK&utm_source=facebook&utm_campaign=facebook_article&libid=23535

I have yet to find a new doctor -- so I have struggled recently to cope with the pain somewhat... I'm sure that it's a form of arthritis, and it's possible and common I understand to have both an arthritis and fibro, and I suppose I just think as always it could be worse right? Always thinking of those worse off, I feel for them and yet am thankful that I'm only in as much pain and discomfort as I am!!!

Last time I wrote I said doctors were thinking my numbness was due to my low b12, but reading further into rheumatoid arthritis this is a common symptom, and it would explain a helluva a lot... No surgery has been successful, I take supplements for b12 and continue to struggle with the constant numbness at night usually, which is when the knuckles seem to ache the most... However so interesting to find out that doctors had me on omeprezole for my tummy issues and also for my sensitivity to NSAIDs - but did not put two and two together that this can cause lowb12 as the antacids stops absorption of b12, yet they've continued to prescribe me... So how does this work? How do doctors seem perplexed by these symptoms, and seem to be part of the cause... Why do they do loads of test and tell you you have low b12 and that this is causing one thing or another but not know that this is a problem. I had to find this out on my own... I'm feeling let down yet again by the general medical industry, actually even specialists! No one seems to communicate about their patients to one another... Quite simply put... I'm over it! I wish to find a doctor who actually pays attention and knows that a+b=c. Heaven knows that they get paid enough for their supposed expertise.

I guess I started to blog to share and help... And don't wish to be a whining snivelling blogger who just moans about life as a chronic pain sufferer. Which I hope I don't sound like, so as always I hope that you can find something helpful, or even have some answers to share on this possibly similar pain journey we are on. Thanks for being a reader and thanks for letting me read!!