well Sjogrens was discovered by Henrik Sjogren, a Swedish ophthalmologist.
Extremely clever I say seeing as it's such a complex illness, just about every symptom of illness I've had can be down to the Sjogrens or auto immune disease! You wouldn't think it but it's true, practically any symptom can be put down to These, so how do you know what's what? Well you don't really.
After my initial shock of being told my Sjogrens wasn't primary, that in actual fact it was secondary (meaning I have other autoimmune disease/s) Mine being Rhumatiod arthritis, I tried to find out as much as possible about this awful illness, because I think I still found it all a bit of a bad dream!
I went to my local book store which happens to be a very large and very well known one, I went straight to the health section expecting to find a Sjogrens book, but nothing!
I went to the counter and asked the young girl who said " a book on what?" Now I'm sure people don't mean to smirk when they say it but everyone has, its because it sounds so odd, and I admit I did the same, it's either that or they say " that's a 4 x 4 car isn't it?" (If I had a £1 every time I heard that!)
Anyway after explaining it was an illness she typed it into the computer, after asking to spell it first of course!
To my surprise she said "there's 1 book, it's £5.99, shall I order it?" 1? 1 book? I thought!
"Yes please" I answered.
My book arrived the following week and it was tiny, I started reading it straight away & finished it very quickly, oh dear I thought, this is going to be a difficult disease to find anything about, and I wanted to know all about MY illness! Every time someone says to me I've got..... or my friend has...... If I don't know much about it, I research it, I like to know these things, well this was about me so I wanted to know even more.
So I did what everybody says not to do......I googled it, and I actually found out loads.
Don't get me wrong Google is a good tool if used properly, I would never rely on it 100% unless it's the NHS choices website or Arthritis UK which I have used this lots of times since and found them invaluable.
I think my lack of complete understanding of this disease left me feeling very worried, therefore I couldn't talk about it, I'd told my husbands and best friend the full story but I told my children an edited version.
I just didn't want to go through it over and over again, all I did was cry if I even thought about it, so my parents didn't find out for over a year, I just didn't want to worry them.
And it took a further 2 years to come clean to all my friends and others who asked.
My first medication I was offered was Amitriptyline for my bad headaches, 25mg every night,
For the first 3 months all I did was sleep! And that was a low dose but then I've always been a cheap night out !
I didn't mind though because the headaches were a thing of the past, oh the relief! :)
The next medication was Hydroxychloriquinine or plaquenil (cheaper but the same) this is a DMARD (disease modifying anti rhumatic drug) so it dampens down the symptoms of the arthritis.
I didn't think much of this drug until I was taken off it because my liver threw a strop and then I really missed it! Lots of pain :(
I would now actually recommend it.
The third drug and these are all pretty much standard I might add, was Naproxen which is an anti inflammatory. And of course omeprazole which comes part & parcel with Naproxen to protect the stomach.
I definitely need that as I've suffered with my stomach, acid indigestion, heartburn, IBS which is all related to Auto immune diseases (see I told you!)
The forth was of course good old pain killers, co codamol to be precise, 30/500mg which is the highest dose but I already had them in the past for my bulging L5 S1 disc in my back,
Once on these lot I started to feel so much better and my symptoms were calming down.
What a relief!!!
Find us on Facebook Sjogrens support UK : https://m.facebook.com/groups/454589521294750
#myimmunesystemattacksme #morethanmeetstheeye
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