Well it's been a while since I wrote a blog so I do apologise, the life of a mother has always been busy!
Since my last blog not much has changed apart from the fact that I've just got used to having autoimmune diseases, and learning to live with them everyday.
The shock and upset of diagnosis has gone, which I knew it would eventually, and I'm glad it has as you can't live your life upset and worried constantly.
For those of you that don't know, I have Sjogrens, Lupus, Fibromyalgia, rheumatoid arthritis & DDD....so far....
I also manage a group on facebook for UK citizens called Sjogrens support UK.
We now have over 1300 members, who I support and they support me.
I was diagnosed with mixed connective tissue disease around 9 years ago.
MCTD is an umbrella name for lots of different autoimmune diseases and I should say that they dont usually come alone.
So over the years I've found out i have other AI's from symptoms I've had, and no doubt I will find more!
It's really difficult to know sometimes what symptom is for which one? As they all mimick each other.
I know the dry mouth and eyes are Sjogrens and the sensitive to touch and burning is Fibro but the problem is the medication for Fibro gives you a dry mouth, infact other Meds give so many side effects too that sometimes it's better not to have the Meds!
My problem has always been that my liver dosent tolerate alot of the Meds so I can't take most of them anyway.
I'm happy to say though that in Dec last year (2016) I did get rid of one of my biggest problems and that was my gall bladder, I had lots of gall stones probably caused by autoimmune disease, and the pain was horrendous, I've not had pain like that before, and I don't want it again!
So that pain has gone now but Ive now noticed i can't take my cocodamol for pain anymore as it gives me a different pain, like a bile duct pain? It goes into spasm, which i will be seeing my gp for as I can only take tramadol and that's not good to have all the time, and it keeps me awake at night, it's like I've had 20 Coffees!
I do worry that if I have the good stuff now then in years to come it won't work on me and then what will I take for Pain?................? Exactly!
I started out on 25mg of amitriptyline 7 years ago and I'm now on 100mg as I've got used to it, I mean 100mg!!!
And I do get pain, everyday, pain pain Pain, and I don't know from which illness it is as they can all cause pain, (see what i mean?)
I think the worst pain is my legs, I get this everyday without fail, it's like deep bone pain.
And it takes ages to go, I keep my legs warm and that helps.
And I get headaches too, although not so bad now I have the amitriptyline and a daith piercing, yes a piercing.
It's really helped, just was sceptical at first but thought why not at least give it a go, so I did and I'm so glad I did as it's worked, and it's a very nice piercing!
If you suffer with bad headaches I highly recommend you try the daith, it works on a pressure point in the ear.
Anyway that's enough from me, and I promise not to leave it too long for the next blog.
Thanks for reading
Charlie x
