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!!