Sunday, 30 April 2017

Once again... I have left the blog for far too long!
I have still been reading, and theres been some pain along the way as well, no surprises there, BUT I have been flare up free or mild for awhile now.  I read a recent article about blood vessels and fibro:

Although I read this theory awhile ago it is now just showing up again and as 'Breaking News', so if it was breaking news in 2016, can it be breaking news in 2017, same article etc.  I can't stand the CNN banner style 'Breaking News'... I find this very disconcerting.  It's almost a bit like a joke.  Many of us are constantly checking for new news on fibro, real news, updates on studies, a cure, anything that would be useful and helpful to inform us on this very confusing disorder.

From all the things I have read I feel strongly that is is auto-immune linked, but there are articles out there that suggest it is too complicated and not science based to put it in this basket.
More info in this link.

There are so many links between certain symptoms or side symptom to fibro sufferers, I found another one that didn't surprise me at all.  Both my sister and I, and possibly my mother who was undiagnosed fibro sufferer (we think) but can't ask her (RIP), have issues with ulcers or gastro issues if you like.  You'd think that if a worldwide questionnaire went out most fibro sufferers would all be linked and the scientists could do a correlation on the most common and then pinpoint their studies on these... I bet it wouldn't take too long to get an answer.  I'm not talking all the symptoms we know but these overlapping ones, like gastro intestinal issues, etc.  I personally think they should be looking at even smaller ones like reactions to bee-stings and other odd immune responses.  You can see where this is leading again.  I firmly believe that fibro sufferers have more in common with autoimmune issues than they do muscularly etc.  Most people quite often brush of those allergy type symptoms as normal allergic reactions, as I did for many years, but the more my sister and I share our symptoms and links to studies and news on fibro the more I believe it is genetically linked as well!  That there is a true connection to genes and it is a proper disease that many go undiagnosed particularly the older generation like our mum, who struggled with all the same type symptoms but the old fashioned unrecognised, all in your mind diagnoses is what she would have gotten.  

It is very unsettling to know that there are so many suffering worldwide, and there are still many who have an old fashioned view on it.  When I say many I usually mean doctors!  How do we get around this?  Big question!  I don't really know myself, after all these years, I HATE going to the doctors because no matter what chances are whatever I am experiencing will be automatically linked to fibro and a prescription ensues or I don't get taken seriously... it's a sad day when a fibro sufferer has to go to yet another appointment and be deflated or walk way rattling with pills.

No matter...the only consolation until we have an answer is knowing we are in it together.  From one fibro sufferer to the next, I know how you feel, and I know it isn't easy!  Keep reading positive and inspirational text, and keep others informed of any news you find, so we can get through as one.

Go well!

Tuesday, 14 February 2017

Well, shame on me!  Its been a few months and I haven't connected up, HaPpY NeW yEAr!!!

I've been struggling a little with what to write about, I always hope to bring new news or something that isn't repeated very often... and if I can't then I don't blog.  There is now an abundance of information about Fibro, it's exciting to see people taking it very seriously now.  I've read we are on the cusp of moving from syndrome to disease, all we need to have is a cause.  I've read research suggesting it is blood brain flow in our brains, to some research thinking it is a link to the cold sore virus, to some research thinking it is linked to allergies and intolerance to certain things.  Does it do your head in?  It does mine sometimes.

I know this is how all unknown diseases begin, there has to be pathway to a firm diagnoses and then tests, and research and so on and so forth.  What most people including Fibro sufferers don't understand (before we knew we had it) is that a declaration or confirmation is important.  No matter what syndrome or disease, you want the reality, the facts, the confirmation that 'this is what you have' 'we can prove it' and 'we know for sure'.

When I read other blogs and information from Fibro'ees I know that it is Fibro.  We all share similiar symptoms.  We all know what it is like.  Some symptoms more serious than others, more consistent, more understandable, others, not so much.  Here's an example... numbing hands!  I have had 2 carpel tunnel releases (as I have blogged about before), I have had 1 guyon tunnel release, I have seen neurologists, I have have had MRI's, I have been on b12 supplements, I have used wrist supports, I have tried all sorts... and since there is no valid confirmation, or tests that prove otherwise, this has simply been put in the Fibro basket.  Have the Dr's done all that can to be sure it is not anything else?  I guess so.  However, there MUST have been carpel tunnel, or why would they do the surgery?  I have a slight bony encroachment in my spine that could link to the hand nerves.  I have very low b12.  I am clearly at my wits end with it.  Yes it wakes me at night sometimes.  Yes it goes numb when I hold my arm in a certain position.  Do the Dr's just give up, do they just pop that symptom in the Fibro basket?  I really don't know... what I really do know is that is is a not so common symptom in fibromyalgia list of symptoms, but some of those people have had serious whiplash like I have... is the whiplash the reason for Fibro as I have read studies that suggest most people with Fibro have suffered back or neck trauma... see what I am getting at?  I feel like Dorothy from the Wizard of Oz in the tornado, whipping around, being tossed about, not knowing the who, what, where, when or why's of Fibro.

On another note, I found an interesting link on medication specifically for Fibro in trials that you may find very interesting!

Reading about the new trials I suppose gives one hope that this is a syndrome that deserves consideration of relief.  It is a battle to find the 'thing' that works for you... to ease the pain, to let you rest and get restorative sleep, to help you get on with life.  As you may remember from my past blogs, I have tried a host of drugs.  What am I currently taking?  Celebrex daily, Tramadol for severe pain, and back on Amitryptiline (only 1 a night) to help relax muscles and try to get restorative sleep.  I have to say that 1 certainly is less zombiesh than the 3 I used to take... when I was trying to find something that worked... at the moment this mix seems to be ok... I am making every day count, some days count less but I do the best I can, as we all do.

As always I know that many of you will relate in this tornado of Fibro, it does help to know that you aren't the only one, as much as you wouldn't wish it on anyone, surely there some relief in us being in it together, even strangers from afar.  A Fibro sufferer here reaches out to a Fibro sufferer there.

Go well, and keep your chin up!

Sunday, 20 November 2016

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 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! 

Wednesday, 17 August 2016

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.:

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!! 

Friday, 15 July 2016

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.

Monday, 6 June 2016

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:

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

Saturday, 30 April 2016

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!