January 2019 was the last time I blogged.  I thought I was on the up and up with a new and proper diagnoses.  The prednisone was working, at least it worked until it plateaued.  I couldn't get past 10mg, and I was still taking anti-inflammatories (and painkillers).  Finally my new Dr conceded that maybe we needed a 2nd opinion on the polymyalgia, for 2 reasons, 1 it is extremely rare for someone under 50 to get it, and the other reason is that I still had a lot of pain that wasn't subsiding AT ALL in my spine.  So a referral to the rheumatologist (the 2nd one I've seen over the years).

Well, what happened was good and bad. (personally and worldwide).  The bad was that the Dr confirmed definitely that he believes it is fibromyalgia that I have, and the good was that he believed I had local issues that triggered the fibro and that they need to be dealt with, as in sorted, as in get some scans done and find out where this serious pain is coming from!!  I say good news because the scans all pointed to issues with discs in my spine, and this is fixable.  We know fibro isn't, but local issues are, and can be!!! So yes, it has been a VERY long journey to today - literally 2 years since I have been on this blog - I'm sorry it took so long but it's been one helluva an eye opener.  

So, what's the story?  Major disc issues in L5-S1 and C5-C7, and a surgery to fix this is on the horizon... let's remember this is after YEARS of my old Dr just chucking me in the fibro box over and over.  This really could have been dealt with a lot sooner, so what I'm saying to you all is, you know your body, keep fighting for what you know.  I should have pushed more, and questioned more, and said how I felt.  I KNEW this wasn't just fibro, it really wasn't!!  So now after MRI's, CT Scans, and x-rays we know there is some major shiz going on!  I know I may be sounding overly abundantly positive, it's just that all I know is, there may be 'some' relief coming my way.  I'll always have fibro, I get that, but if only I could increase the relief by some slight percentage I would be one happy camper. 

What kind of Dr do you have?  Are they really looking into 'why' you have the issues you have?  Don't just let the diagnoses be fibro if you feel there are underlying issues.  Don't disbelieve yourself.  It doesn't hurt to ask and if you aren't being treated as you should be, change Dr's.  Immediately.  I'll never look back, I have such a caring and interested Dr who really wants me to be painfree.  It's worth looking to find that Dr who really feels your pain!  

Good luck out there, especially with the added issue of Covid.  We could all do with a break!!

Well here's a revelation for me!!!  And it has changed my life so far...
I got sick with a virus of some sort, it flattened me... slept for 2 days straight and was having what I thought was a fibro 'flare'... so I finally switched gears after years of saying I was going to another Doctor!  I finally did.  At the end of the second day I could barely move but made my way to my new Doctor. 

He asked a lot of questions, which was good... I told him I had previously been diagnosed with Fibro and have had back injuries.  He carried on poking and prodding where the most pain was - in my lumbar area as usual... hips, low back, groin... just super painful... and after a thorough chat he said he believed I had 'polymyalgia rheumatica' which is like arthritis but of the muscles and tendons...
https://www.arthritis.org.nz/information/forms-of-arthritis/polymyalgia-rheumatica/

Of course at first I was skeptical because I've been through the wringer with doctors as we know.  However, he told me how we were going to deal with it... and if this works then we will know for sure of the diagnoses.  He prescribed Prednisone and said we will know within 24-48 hours, because if the Prednisone works then we know our culprit.

So we slammed it with Prednisone, and YES within 48 hours I felt like a new woman!!  Seriously this has blown my mind.  Maybe I did have Fibro, or maybe I was misdiagnosed, and every time I went back to the Dr with pain, any Dr I went to saw my diagnoses and NEVER thought to look further... even if it was possible that they got it wrong.  EVEN though the pain I described wasn't symptomatic of Fibro... more like polymyalgia.  For once a Doctor listened to me... heard where my pain was and the symptoms that went along with it and is helping me deal with it.  He said even if I get this wrong we will get to the end of it... but now that we know the steroid is working... we know that he got it right... so now I keep a journal so that we can see how much I need to take and keep lowering it until my pain stays at bay.  It can go into remission and at some point I can come off and hopefully lead a normal life. 

This is a post to encourage anyone who doubts their diagnoses and wants to take a chance and possibly look into what else your symptoms might actually represent.  I'm not one to usually sit back and accept, particularly if I feel like I am being put in a box.  I bet many of us have had someone say you have Fibro, that's it, that's your life, move on and just deal with it.  I've heard many who have ended up finding out they have Lyme disease, MS, and other muscular disorders/diseases, so if it doesn't sit well with you, keep trying and find a Dr who really listens to you. 

Polymyalgia Rheumatica is an autoimmune disease, it can also be triggered.  It can also be had in conjunction with Fibro.  So I guess in a way I could have both... but I feel like if I did I wouldn't be sitting at a 7-8/10 in pain... whilst I am still only in my first week of treatment... I have never been closer to 10 in many many years!  So I am excited.  I'll always remember that this too is a chronic illness, it won't go away and could be triggered again, but I feel at least if I know that I can slam it with Prednisone and get better quicker... and go into remission... life will be simpler. 

I am now on a mission to do all the things I want to do and know that I will not suffer severely the next day with such pain and barely be able to move for days afterwards. 

Make sure you question everything... make sure if you are put in a box you don't stay there, if you believe or even have a niggling something isn't right... ask questions, find answers.  Then ask some more.  I know this will still be a long journey, and I know that chronic pain no matter what kind is not pleasant and needs attention.  Take care of yourselves out there!  Be kind to yourselves. 

This morning, as many mornings in past, I woke up with 'fire in my blood'... the good ol'feeling of flowing lava through my body.  I seriously analyse this discomfort, and often wonder when it is happening where it all comes from.  It made me think of a conversation I had with my sister not long ago, and her comment that the 'Chinook' that comes through her province causes her great pain and discomfort.  So I thought about that and did some googling on barometric pressure.

Barometric pressure and chronic pain sufferers bring a load of the same old stuff up, and also studies that suggest there isn't enough scientific results to confirm that it has any effect on sufferers.  However in a survey in USA amongst many middle age women Fibro sufferers 80% of them said weather changes affected them and pain increased with weather change. 

So today there is definitely barometric pressure, and there is news that a storms is on its way, and you can certainly feel it in the air.  Some of us chronic pain sufferers, feel it seriously within our body.  It can only be described by me as 'lava flowing through my veins', or 'fire in my blood'. The worst part is, I'm not joking, I'm not trying to be funny, it just is.  I am not saying that this is the only time it happens, I just know it is exacerbated by this energy build up.  It feels like my body is responding to the electromagnetic forces outside.  It feels like the energy is trying to suck out my cells through the walls of my skin.  It feels like the energy makes my blood (that is on fire) swirl around the joints in my hips and my low back, and sometimes my shoulders. It is quite strange that I try to figure out how to describe this pain, but it somehow makes me feel better, it hurts still but I feel better for telling someone how it feels.  

The sad part about having a flare up is the working up of the body towards it, in some instances you can feel it coming, where each day the pain increases ever so slightly, and you wish it away, you know it is coming, but nothing stops the steps up and up and up towards the final landing of the flare! Those days when I have a list of jobs I want to complete, just have to be put on hold (on a weekday too bad so sad, I still have to go to work).  On the weekend I have the luxury of saying no, to cleaning the oven, no to organising my drawers, or getting the extra bits done that I look forward to during the week.  I can't choose anything else because my body says this hurts to freaking much, so just try and be still, try to relax and wait for it to subside, notice key word here being 'try'!!

Go away weather energy, I say.  Hurry up and pass by.  Either rain and thunder, but please stop sitting in this holding pattern that is killing me!!!  I know it is real for me, and I know that the barometric pressure affects me, so science can say whatever it wants based on the general studies they do... I know it's happening and it hurts like hell.

Having said that, I hope you all are able to deal with your 'fire' 'lava' whatever flows through your body in a positive and hopeful way, go well and keep your chin up as usual.

As time goes on, I often wonder how life will be with Fibro and ageing.  There are days when I imagine that I won't be able to cope with the ailments that one can get as one ages, on top of Fibro.  It kind of does my head in a bit because it is a worry.  Then I remember if one is being mindful, one wouldn't worry about the future so much.  

On the days I struggle with more pain than usual, I find myself thinking I won't be able to be the grandma I could be without Fibro.  Lord knows I hope it isn't too soon, but at the same time I think... I hope it is soon, because if I am only going to get worse, it is better off to happen in the near future while I am still able to be a grandma that can walk to the park and push the littlies on the swing, and actually have a bit of fun...  

On the other hand, going forward maybe there will be some more knowledge surrounding this mysterious disorder.  Maybe there will be something that brings the relief we need to get through with long spells of painlessness.  We can only hope.  

The best we can do is get through each day, and remind ourselves that we aren't alone in this.  There are so many sufferers of all sorts of chronic pain, and Fibro is just one of them.  I find thinking about the best things in my life get me through the day, the moments shared with my children, the time we spend together at the dinner table, the times that I am so preoccupied my pain is in the background and not the forefront of my day.  If we can count those small special moments throughout the day, surely living in the moment and feeling those joyous moments will make each day a better day with Fibro.  

It's worth a try!!

Everyone's been sick with a flu, a cold, or a virus, and I can't complain because I haven't been.  I said the other day to my hubby, 'I'd rather be sick with a flu or cold or virus once or twice a year than have Fibro all year round'... He's in the thick of it and said 'I'd swap you right now'... (he really didn't mean it!!!)...

It got me to thinking that we all have good and bad things in our lives.  Some things I wouldn't ever swap, and I guess in a way I am thankful it is me and not my children that have Fibro or chronic pain.  I couldn't bear to see them struggle with the inconsistencies (the flares) and the unknown elements of this syndrome.  I am thankful that they are healthy and get the odd flu or virus than have to deal with wondering what one day to the next will be like.  It is a finicky business this Fibro!!

It is horrible to have family members unwell.  I rarely get sick, which is such a funny thing, I am actually really healthy, it makes me laugh.  Some may say it is a tiny blessing, something to be thankful for not having to deal with common every day sickness on top of Fibro.  I guess I am thankful, and I guess that I wouldn't change my situation for the health of someone else.  Healthy as a horse except I have Fibro (that's quite the statement!).

We all know that we have to count the good days as blessings, and I continue to do that.  What we have to do to get through, is look at in a different light, look at from all angles, look at it from the bright side of life.  I am thankful it is me and not the ones I love the most in this world!!  

Keep well, fellow Fibro sufferers, keep your chin up, keep thinking positive, and always look on the bright side of life :)

The intensity of pain during menstruation can be insane!!!  Such as the feeling of hot pokers being jammed in to your low back.  Just the visual that comment creates can certainly sum up the reality of what if feels like!  Any one with me?  

I know that I've always had a very painful menstruation, however I knew many people growing up who did but I didn't actually realise until these later years that mine or anyone with fibro, does not have just 'the regular dysmenorrhoea', it is full force, brutal and 100x worse than the average... why is this?  I have looked into it and all I can see or read or take note of is that it 'just is'... because we feel pain on a higher level, but I actually feel like my spine flairs, and the area around my low back seems to be screaming out in pain.  The good news is that Tramadol does seem to take the edge off, a heat pad seems to make it feel slightly better, anti-inflammatories on top of this may help improve it but overall, it just hurts like F--K!!!!!!

So I guess it means that I wander about in a zombie like state for 4 or 5 days... hurting when I bend, hurting when I lay in bed at night, hurting when I'm smiling, hurting when I'm just living my life... something I guess those with FMS just 'do', on a regular basis.  God, we are a special group of people aren't we?  I think we are.  I think you are!  Brave as they come, to face each day, week, month and years with a brave face, and a fighting attitude... how great we are!  Keep your chin up, remember there are others out there fighting the same battle and we aren't alone in this big bad fibro world.

Go well.

Everyone knows the saying 'knock on wood', well I should've done that after my last blog, bleating on about how great I was feeling... isn't it just awful luck to feel so great and then WHAM... you get a taste of reality and how bad it feels when you have a flare!!  

The worst bit about a flare has to be the thoughts that swirl about in your head, and you know it isn't 'really' how you feel... but the pain is making the devil come out.  Am I the only one who feels like this?  I hope not.  In a way I imagine this must be how people feel when they come to the end of a painful journey with some serious illnesses out there, when they come to the end and it is finally over.  In my head I think at least it is over... isn't that awful?  Especially since I have lost both parents to cancer, at relatively young ages (54 and 64), I feel horrible when I have these thoughts... but when I flare badly I think about the pain and wanting it to end, but I know that I will go through this again and again... and that is WHY I have the horrible thoughts, it isn't just once in my lifetime, it is many many times in my lifetime that I have to lay there and feel the pain that freezes me in one position, because I think I'll just keep still and pray it away... if I move, surely it will only get worse...  then of course I feel guilty because I am lucky to be here.  I am mindful that I am lucky to be living and breathing and sharing this world with other lucky people.

Sometimes when I am in this pain I even forget to use the techniques I know work so well, to help me through it.  For example breathing techniques and mindfulness... but who wants to, or even remembers to do this at 3am in the morning?  or 4, or 5 for that matter!!  I sure as heck don't... all I can think about is how much it hurts.  I also wonder for how long?  Is this as bad as last time?  Is it worse?  When will it end?  I actually do analyse what kind of pain it is this time... it's mostly just awful.  

I hope one day there is a known cause of Fibro.  I hope that one day someone tells us why we have it?  How we got it?  Why it is triggered?  How come it can come and go?  I know there are lots of guesses and suggestions and some studies, but they are all just general ideas, no hard core facts that we can all say 'yep' to, that makes sense, and 'yep' I can see how that works and why I am the recipient of this horrible syndrome.  Or why anyone is.  If 2-4% of the US population suffers, which is equal to millions, how it hasn't intrigued more scientists on the grand scale?!  It is such a highly confusing and understudied syndrome, which in some cases I believe can be super confusing to specialists even, never mind just regular every day people who have no idea, and have only heard bits and pieces over the years. 

I probably should stop now while I am ahead... I get worked up about it and can waffle on... but I have to say I am not feeling sorry for myself... I feel sorry for those who have worse flare ups, are bed bound, or house bound, and in worse pain daily.  I know there are many, so I still thank my lucky stars I am not worse off.  I thank my lucky stars I am here on this planet, alive and breathing and I remind myself daily that's special in itself, even if I have pain that makes me want to be free of pain forever and finally... I would prefer to have those moments alive and well... alive!!!  

Remember that in the end positivity will see you through, sharing your story will help, knowing other people are in the same boat, and we aren't alone in this.  Also remember that flare ups do happen, and one day hopefully we can laugh in the face of it!

Go well, rest when you can, eat well and keep smiling!!

It's March already!  I don't know where the time has gone...
Recently I have been very full-on, recovered from a minor operation which created what seemed to an incredible flare-up, short lived and then (knock on wood) a very long spate of WOW I am cured.  Yeeah right!!  But a very long spate of feeling pretty bloody fantastic.  So, I am not bragging but I am only wishing to give hope to those who think they won't have a stretch of goodness, with minimal pain.

Before my surgery my chronic pain was seriously chronic!  I mean every day I was sad and hurting, and hurting from the moment I woke up to the moment I laid down, with the distraction of work and motherhood in between to make me think maybe I wasn't hurting but Lord knows it didn't stop.  This went on for months, at least 3.  Strangely enough, the surgery I had was totally unrelated to my pain, or so I thought... my pain was in my low back persistently, my hips and my groin as well, and of course sometimes all over aching and the regular sore to touch spots.  Then as a by-product of this surgery, while the Dr's were doing their bits, they happened to remove scar tissue from my intestines, and from my spine.  I found this out by reading my discharge papers and had to google all the 'medical words' to even know what else they got up to in there.  I was super surprised they did this but in my search I found out that there is a common chronic pain caused by scar tissue on the spine!  What the heck, NO ONE EVER TOLD ME that this could be causing part of my discomfort or even suggested that it was a possibility.  Or why?!!  Im guessing it is from my c-section of my first child, or a back injury (disc related) (or maybe both)... but it was scar tissue none-the-less... I have yet to ask because I haven't had my post-op Dr appt yet, which so far I am surprised there hasn't even been a letter to advise 2 months later!  Oh the politics right?!!

Don't get me wrong, I'm not saying I'm cured, or that this was my overall problem, I know I have fibro and that I always will but who's to say this wasn't exacerbating the symptoms?!!  It's a real bummer I know, for all of us who have fibro, but it is a little slice of heaven in my eyes... something that has made me feel a heck of lot better, that I wasn't expecting and for awhile (still today) not feeling like I was in a 90 year old body, frail and delicate, achey and sore, struggling to move, and waiting for the next flare up!!  Long may it continue.

I guess it is the small things.  I'll take it!  Anything that increases my happy threshold, my healthy outlook, my future not so in pain self, I am all up for.

Go well fellow fibro'ees.  Rest well, eat healthy, enjoy any pain free moment you can!  

I know I have mentioned this in a previous blog, but it has come back to me after reading another Fibro blog recently and her words rung a bell within me... she, yet another person with Fibro, has also had an accident in the past resulting in whiplash.  I hunt high and low for information about Fibro, but again the percentage of articles and information is outstanding of those who have suffered with whiplash and now suffer with Fibro.

Have a read of this article I found, and prepare yourself... it is long and there are lots of big words but there are also lots of studies suggesting that whiplash has long lasting effects, long after the injury has even healed.  Once again I am not saying this is the answer, I am just saying it feels so consequential, and bloody interesting.

Food for thought:
http://www.doctorschierling.com/blog/chronic-neck-pain-only-one-of-the-many-consequences-of-whiplash

There is plenty to read out there about Fibro and current studies, I just hope and pray that one day it will all be clear!  Just don't read the one from the Irish Neurosurgeon who says whiplash and chronic pain are all made up... that was a boring and laughable article!

Oh my gosh, oh my gosh, trolling through the internet and found this:
http://www.drliptan.com/blog/2017/9/18/build-the-ultimate-fibromyalgia-pain-toolkit-part-2

I would take the time to also read through Dr Liptan's studies as well.  Sounds like she has put her whole heart and soul into studying Fibro.

It says a lot about someone when they take the time to recommend a PAIN TOOLKIT (see link above) and I for one am off to purchase and follow these instructions.  Thanks Dr Liptan!!

Well, this proves to be a very interesting read and something to think about:
https://mpkb.org/home/pathogenesis/th1spectrum#fn__1

It is a scientific study that really rings true to many of the varying symptoms ranging from one fibromyalgia sufferer to another... and why is there such a strong correlation to clusters of symptoms i.e. Irritable Bowel Syndrome etc.

I always feel like I am learning more and more about the possibilities of causes and reasons for Fibromyalgia, and the pain and suffering of this syndrome!  I hope that the scientists (such as these in this study) continue to try and put 2 and 2 together for chronic conditions.  It is not easy not knowing, and not easy when people have preconceived ideas about Fibro or any other condition that doesn't have a 'disease' branding (ie. therefore not real in the medical world). 

It just proves that we don't know as much as we think about our bodies, in this article it explains the hundreds of thousands of unknown bacteria we have in and on our bodies.  Some say we don't even know the life cycle of them.  Also that we didn't think they could transfer DNA to one another... there is so much more to learn!!

Pain on Christmas day.  Crappy!  I don't know what to think about having to feel crap on Christmas day, and having a brave face through it all.  It is difficult to slink away and rest, or be sore... I don't want the attention!  Do you?  I don't want to feel bad about it, but what the 'f' does one do?  Do you get tired of making excuses?  Everyone I was with knows I have fibro, but do you wanna be 'that person'?  I HATE having to feel sore, and then tired from being sore, and then tired because I can't sleep but still do the stuff of a mother and wife so everyone doesn't feel bad or worried... it is such a vicious crappy, sad cycle!  So my first base is to just go with the flow, second base, smile and nod, third base wince and maybe have an extra gin LOL!!  What else can you do?  Ha!

Everyone has their pain.  I guess I just feel like it could be worse right?  I'm really tired of being sore when I flare which has been pretty intense lately.  The weather, the energy when it is about to storm and you can feel it in every joint in your body... it is like when cat's and dog's know there is about to be an earthquake, they are the first to disappear and hide... well I know when a storm is coming because I hurt like hell.  It is not a fallacy that is for sure.  My sister is the same and she lives in a different country... it hurts more than ever!

I am sure that I have said in the past I don't want to whine while I blog, but today, today I have decided to have a whine.... and well, not to mention a few wine too!!  I don't know what to say to regular people... that don't know what it is like to hurt EVERY SINGLE DAY... in some way, shape or form.  What can you say?  No one gets it but you.  Other fibro and chronic pain sufferers... to feel pain of some level every day... it is like a story that you don't quite know how to explain, and can't remember if the main character turned right or left, or was it 2 months or 4 months, did they fight or make up... it is a bloody jumble after awhile because the pain seems to run the show... I am going to take time again to read more and try and be more mindful and beat the crap out of the flares, and the daggers of fibro!!!  

Today is Christmas day, and today I say F-you fibromyalgia!!!!

Go well readers and fellow fibro sufferers!  Happy holidays to you.

I came across this very interesting article, great for those newly diagnosed and those who just want all the cards on the table.

Once again, reference to pinched nerves in the spinal cord, which intrigues me, in particular the percent of sufferers that have spinal, neck and back pain history and have fibromyalgia:

https://www.painscience.com/articles/fibromyalgia.php

I find this link to spinal injury so very interesting...

https://www.our-arthritis.com/arthritis-blog/arthritis-treatments/contemporary-medicine/378-your-fibromyalgia-may-be-a-spine-disorder

and this...

https://fibromyalgianewstoday.com/2017/05/17/fibromyalgia-can-mask-spa-chronic-inflammatory-disease-study-suggests/

Life has been ever-changing for me at the moment, it has taken me from updating my blog regularly.  With the changes my symptoms have been very up and down as well.  I know that some have said stress is a related factor in flare ups for Fibro sufferers.
https://www.medicalnewstoday.com/articles/315646.php

I can't say that changing career is 100% stressful, it is also exciting and new.  So I haven't felt the severe flare ups I have had in the past but I still have moments, they usually are lasting 24-48 hours as opposed to a few days as they have in past.  So maybe I either have better management or I'm just learning to ignore ha ha!  Wouldn't that be fantastic to be able to ignore our pain.  

There are a few things I've noticed that have made a difference, one thing is I make sure I do my stretches every day (gentle stretching), not quite yoga but just stretching out those muscles and being mindful about it.  Another thing I've been doing is having a 'super green' smoothie every morning (I take a break on weekends)... if anything this is the biggest change for me and I would have to say I am certainly feeling better all over for it.  Don't get me wrong, I still hurt everyday - why wouldn't I??? Chronic pain is a b-tch we all know it!  But I am hurting on a lower scale 1,2,3 as opposed to 4-5 regularly.  Of course there is no scientific bases to these super greens but for me, it feels like they are working some sort of magic...  I guess what I'm trying to say is that I'll try anything to minimise the discomfort.

I've also started drinking a Tumeric latte, there is mounds of studies on Tumeric's ability to help with muscle and joint pain.  I know it all sounds very 'hippy' but like I said, I'm keen to try anything that may attribute to lessening the aches and pains.

On to other things...did you know that Lady Gaga has fibro?!!  I didn't, and imagine living that life with fibro... it's inspiring to know that someone who works so hard and entertains for a living can manage fibro and continue as she does.  If you are interested in reading here is an article I found:
https://www.stuff.co.nz/life-style/well-good/teach-me/97288462/fibromyalgia-the-misunderstood-chronic-illness
I love Lady Gaga more now than ever - not only does she inspire with her music and her grounded attitude, she suffers like the rest of us, and is obviously open and understanding to people with chronic pain and fibro.  

Once again, I always aim to get onto blogging and I will continue to try with my busy schedule, I sure miss it when I don't!!  Go well, sleep well, rest well, eat well, and take good care of you!

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:

http://medicalhealthnews.info/fibromyalgia-mystery-finally-solved-researchers-find-main-source-of-pain-in-blood-vessels/

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.
http://www.emaxhealth.com/12410/fibromyalgia-autoimmune-disease
More info in this link.
https://www.verywell.com/is-fibromyalgia-an-autoimmune-disease-716148

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!

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!
http://nationalpainreport.com/three-new-fibromyalgia-drugs-could-be-on-the-way-8830514.html

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!

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.