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!

No comments:

Post a Comment