Saturday, 18 April 2015

All up - I lasted 3 weeks without major issues... then BOOM you know how it goes... I had 3 severely disabling days, although I say disabling but the 'show must go on' and I still had to function as an employee, mother, wife, friend and person who needs to get from A to B!  My worst symptom which I have had in the past 2x now was in my shoulder!  I couldn't even lift it to reach in the cupboards -- what is up with that?  Where does it come from?  Why the shoulder?  I didn't even do gardening!!!  (unless I was sleep gardening!!!).  Of course my groin and hips felt like they immobilised me... as well but I suppose after so many years of having this I wonder if I actually downplay the pain?!  Does everyone do that?

Something I came across that truly annoyed me were some old blood tests that reinvigorated my concern about my autoimmune health.  I am sure  I mentioned ANA (anti nucleor antibody) testing in past posts, but this time I really looked into them and found that there is some interesting website articles by rheumatologists that confirm that Doctors don't understand the results!!!!!!!  So here is a summation of what I read that relates to my results.  I had 3 tests all up.  I had an ANA speckled positive result of 1:80, and another one nucleor at 1:320 and another one at 1:640.  My Doctor and the rheumatologist said my results were a red herring, meaning many people test positive.  However this is true and untrue!  This is where I got annoyed after reading the truth in all this.  Many people do test positive at 1:20/1:40/1:80 and 1:160 maybe ... almost up to 30% of people - and this is known as a red herring for an autoimmune disorder/disease.  I then went on to read that rheumatologists say those that test from 1:320 upwards should be retested as a matter of course, this is the cusp he reckoned where there should be a concern.  Then goes on to say if you test 1:640 there is more than likely an autoimmune disorder/disease and that a close eye should be kept on the patient!!!!!  Regular testing and continue to search for a possible diagnoses.  My initial reaction to this was WTF (yes, sorry about the txt speak swearing!) and how come I didn't get more concern from my Doctor?  Crikey?!!!  He brushed those tests off, or he didn't understand them.  I recently had one done again last year that came back negative but all that means according to this website is that I don't have ELS (Lupus), and because I didn't test while I was having a flare up - a negative result would occur.  Which I didn't know at the time and wished I had done my test during a flare up!  I am telling this story because I reckon most of us are brushed off with the 'red herring' comment.  It would be interesting to see what kind of results Fibro patients get on ANA tests during a flare up?!  When will someone actually claim that this is a real chronic pain syndrome and that it is not 'just fibromyalgia'!  Which leads me to this article I found coming up in my blog!

I usually don't have to search out articles that might be relevant, a lot of the times I hear about them it seems almost by accident!  I guess I alway have my ear to the ground, but maybe I do more than I realise... I found an article that isn't probably new info for people who have had Fibro for a long time but it is an informative site to follow.

The good news is this last flare up I had that was really bad only lasted 3 days, and like I said to my Osteopath, in some ways I'd rather have 3 hard days then several middle of the road pain days, those just seem to go on and on and if you have pain at night it makes for a week of long miserable days of pain but also being very tired (or groggy) depending on what you are taking for pain!

Good luck out there everyone!  Make sure that you try and talk to your friends and family about your pain, it is better out than in, and even though you think you are whining - it doesn't matter, it is healing to talk about anything that bothers you.  Rest, eat well, exercise when you can, drink plenty of water, have fun, love yourself and your life.  Until next time...

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