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
Showing posts with label #myimmunesystemattacksitself #morethanmeetstheeye myimmunesystemattacksitself. Show all posts
Showing posts with label #myimmunesystemattacksitself #morethanmeetstheeye myimmunesystemattacksitself. Show all posts
Friday, 5 May 2017
Sunday, 22 February 2015
The early days. Blog 1
Hi & welcome to my first blog, never done this before so im learning as I go,
In May 2007 I was diagnosed with Sjogrens, I had already Googled my symptoms and Sjogrens came up so when the rheumatologist told me, I wasn't surprised, i ended up at the doctors because I had Reynaulds Phenomena (bad circulation in the fingers) but all id read was that sjogrens is a "condition" that causes dry eyes and mouth, little did I know that it was an auto immune disease..... ok I didn't even know what an auto immune disease was!
After discussing all this with the rheumatologist I left feeling rather emotional, I sat in the car in the podium car park in Bath googling all these long words and terms and realising that this was a hell of alot more than just dry eyes & mouth!
As time went by I found I couldn't tell people, they wouldn't know what I was going on about anyway so why bother?
And in the end I thought I wont mention it in fact I wont think it and it will all go away and il be fine because really I felt great, just a dry mouth really, my eyes only hurt when I wear perfume so I just won't wear any, ever again, and my wrists hurt every now and then when I changed gear too much on a long journey, its fine I can get over this!
My rheumatologist had arranged to see me in 3 months time, and as the appointment loomed I thought about cancelling, after all I was fine, but I went and assured him all was well, this went on and on, appointment after appointment, eventually he said "il see you in 6 months" yes! I thought, see im ok!
By 2009 I went back to work full time in the local pre school, only in a pre school I hear you say, well it was full on, 30 kids per session, 2 sessions per day, and paperwork! Learning journeys, Summative assessments!
Within a few months I became so ill, I ended up in hospital, I told the doctors about my diagnosis, each & everyone of them leant in towards me as if they had not heard what I said, so I repeated myself,, "I have Sjogrens" the puzzled look remained "how do you spell that?" !
This happened again and again roughly about every 6 months, I end up in hospital with, wait for it.........exhaustion!
Why didn't they listen to me? Why didn't they phone my specialist? I felt like a fraud! But I did have an geniune illness, and by now I was really feeling it :(
So life went on and I started medication, hydroxychloriquinine to be precise, a dmard the leaflet said, Disease Modifying Anti Rhumatic Drug.
This sounded good, fingers crossed it was!
My rheumatologist explained to me, it was kind of exhaustion in the fact that my immune system is working too hard and attacking me, therefore the complete exhaustion made sense, and feeling ill was a gland in my brain that was producing cerebral spinal fluid, this gland was being attacked just like my tear glands and saliva glands had been.
So this little gland in the brain can make me feel so bad? Umm yes! :(
Eventually the boss at preschool (after being sooooo supportive) suddenly wanted me gone, after all I wasn't reliable was I? I suppose I totally let them down? I could have taken it had she and the committee told me honestly but she decided to make up a story about me not pulling my weight and before they could say anymore, I told them to shove it, not as plain & polite as that but I actually wished I had used those exact words now, for months after I felt such sadness over what I actually felt at the time was the only solid thing in my life, and it was gone.
So by not working I actually felt better, I wasn't so tired, I could take a nap when I needed and slowly I felt like I had control back.
obviously I was still ill but I learned to pace myself, and sometimes I did too much and paid for it but I was still learning.
as I visited my rheumatologist more & more at the Royal National Hospital for Rhumatic Diseases, I learned that I not only had Sjogrens, but I actually had Mixed Connective tissue disease. (MCTD) this is where there's more than one, I had Rhumatoid arthritis too.
In May 2007 I was diagnosed with Sjogrens, I had already Googled my symptoms and Sjogrens came up so when the rheumatologist told me, I wasn't surprised, i ended up at the doctors because I had Reynaulds Phenomena (bad circulation in the fingers) but all id read was that sjogrens is a "condition" that causes dry eyes and mouth, little did I know that it was an auto immune disease..... ok I didn't even know what an auto immune disease was!
After discussing all this with the rheumatologist I left feeling rather emotional, I sat in the car in the podium car park in Bath googling all these long words and terms and realising that this was a hell of alot more than just dry eyes & mouth!
As time went by I found I couldn't tell people, they wouldn't know what I was going on about anyway so why bother?
And in the end I thought I wont mention it in fact I wont think it and it will all go away and il be fine because really I felt great, just a dry mouth really, my eyes only hurt when I wear perfume so I just won't wear any, ever again, and my wrists hurt every now and then when I changed gear too much on a long journey, its fine I can get over this!
My rheumatologist had arranged to see me in 3 months time, and as the appointment loomed I thought about cancelling, after all I was fine, but I went and assured him all was well, this went on and on, appointment after appointment, eventually he said "il see you in 6 months" yes! I thought, see im ok!
By 2009 I went back to work full time in the local pre school, only in a pre school I hear you say, well it was full on, 30 kids per session, 2 sessions per day, and paperwork! Learning journeys, Summative assessments!
Within a few months I became so ill, I ended up in hospital, I told the doctors about my diagnosis, each & everyone of them leant in towards me as if they had not heard what I said, so I repeated myself,, "I have Sjogrens" the puzzled look remained "how do you spell that?" !
This happened again and again roughly about every 6 months, I end up in hospital with, wait for it.........exhaustion!
Why didn't they listen to me? Why didn't they phone my specialist? I felt like a fraud! But I did have an geniune illness, and by now I was really feeling it :(
So life went on and I started medication, hydroxychloriquinine to be precise, a dmard the leaflet said, Disease Modifying Anti Rhumatic Drug.
This sounded good, fingers crossed it was!
My rheumatologist explained to me, it was kind of exhaustion in the fact that my immune system is working too hard and attacking me, therefore the complete exhaustion made sense, and feeling ill was a gland in my brain that was producing cerebral spinal fluid, this gland was being attacked just like my tear glands and saliva glands had been.
So this little gland in the brain can make me feel so bad? Umm yes! :(
Eventually the boss at preschool (after being sooooo supportive) suddenly wanted me gone, after all I wasn't reliable was I? I suppose I totally let them down? I could have taken it had she and the committee told me honestly but she decided to make up a story about me not pulling my weight and before they could say anymore, I told them to shove it, not as plain & polite as that but I actually wished I had used those exact words now, for months after I felt such sadness over what I actually felt at the time was the only solid thing in my life, and it was gone.
So by not working I actually felt better, I wasn't so tired, I could take a nap when I needed and slowly I felt like I had control back.
obviously I was still ill but I learned to pace myself, and sometimes I did too much and paid for it but I was still learning.
as I visited my rheumatologist more & more at the Royal National Hospital for Rhumatic Diseases, I learned that I not only had Sjogrens, but I actually had Mixed Connective tissue disease. (MCTD) this is where there's more than one, I had Rhumatoid arthritis too.
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