Tuesday 26 December 2017

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!!


Monday 25 December 2017

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.

Monday 27 November 2017

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:



Sunday 12 November 2017

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!


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:

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!



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!
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!