Since I started my group Sjogrens support UK, I've met so many wonderful people, on days when I'm feeling my worst I only have to go on the group and be honest with them and the support is just there instantly.
I'm not saying I need it all the time as most days I'm fine but there are days when it hits me just how ill I am and I have a good cry, just aswel it dosent happen a lot!
There's something about knowing there are others in the same boat as you, it takes a huge load off, I don't know why but it just does?
Like a big family, it's really lovely & comforting.
On top of my Mixed connective tissue disease, which I was also able to add Sjogrens & Rhumatiod arthritis too, I also found out that I can have a bit if everything, so other autoimmune diseases, and there are loads!
When I was pregnant with my last child I developed Lupus, a more well know autoimmune condition,
And shortly after fibromyalgia,
There is some argument over wether fibro is an AI or not, but it does seem to be linked somehow.
fibro is one of those illnesses that there is no test for, you can't have a blood test to see if you have it or not, it's all down to symptoms, and so many out there spend years going back and forth to the doctors trying to find out why they feel the way they do, and getting sent home being told there's nothing wrong, and years later finally getting told they have fibro.
Luckily for me I had already got my diagnosis of mctd,Sjogrens RA & Lupus so it was obvious to my rhuematologist what I was suffering from.
My first symptom was that my skin was really sensitive, I was sure my clothes were hurting me, and I checked my body for sunburn, because that's what it felt like,
My 2 little doggies greeted me one day by jumping up at my legs, like they always do but this time it felt like their claws were ripping my skin off, I screamed and they immediately stopped and tilted their heads to one side as if to say "mummy what's wrong?" That's when I knew something was up,
But my rhuematologist knew straight away what it was.
There's usually not a lot of treatment available that's any different from all the others, I was already on plaquenil, a disease modifying anti rheumatic drug, and amitriptaline for my Sjogrens headaches, naproxen for inflammation, omeprazole to counteract the effects of the naproxen on my stomach. The endless amounts of cocodamol for pain, and the kick ass tramadol for the really horrendous pain, what else could I possibly be given?...........then someone on the group told me about Gabapentin, so I asked for it,
I started off on 100mg a day it hit me straight away! I fell asleep, I woke and fell asleep again! And the doctor told me to up the dose a week later! What?
Luckily I got used to it quickly, and the side effects wore off, and I had hardly any pain, it was great stuff
Then I went for my routine blood test........ The results........ liver function test= sky high! Oh poo!
I had to come off the gabapentin :(
Then someone on the group told me about pregablin, similar to gabapentin but less side effects and more expensive.
So I started on that, again on a low dose and work my way up, it was fabulous! Really really good stuff, the pain was under control most of the time and I felt great, like it gave me energy, without the pain and I just felt good anyway.
Then I went for a routine blood test................. Yep you guessed it........LFTs........through the roof!
Oh poo!
So I had to come off that too :( a few weeks later my LFTs were normal again, but not for long, 4weeks later they were back up, and I wasn't on anything???
What was going on?
I was sent for a ultrasound scan of my liver, this showed inflammation, so I was refered to a Gastro specialist,
I was quite shocked by how rude he was, but I suppose he was doing his job, firstly he asked me if I took illegal drugs? I said absolutely no, secondly he asked me was I a heavy drinker? I laughed and said no, he asked me why I laughed? I just explained I would never do any of these things, it's just not me, then he asked me how many tattoos I had (in disgust) I asked why he was so rude? I think he thought carefully after that as his attitude changed, I finally got across to him just what it's like to be me and what I go through on a daily basis, I understand he does see a lot of alcoholics and drug users that have health problems but to approach all patients like they had done this was wrong, after all I was not one of these people and also he has a job because of all of the patients he sees!
He insulted me once more by calling me fat, by then I'd had enough! I assured him I was loosing weight and left.
It's very difficult to loose weight when you have limited mobility, all you can rely on is diet, years ago I ate what I wanted and ran for 4 miles in the evenings and pole danced, how easy life was back then!
I didn't hear from Gastro again, my doctor is still chasing them up, I have cut out lots of fats to help my poor liver, but it's a waiting game now.....
