been diagnosed with SS for 21 years anyone else like that?..

I have been diagnosed with SS for 21 years since I was 31 I do

believe I have had SS since I was 18 ,,,, I am now 52 ,, I would like

to give some advice and what I have done to help myself

This is my story

I began to notice the glands in my neck swelling up and they

Were painful to touch,, and I started to loose my saliva in my

mouth to the point where I had none,,, I drank so much water I

thought I was going to drown my kidneys

Finally after going to the doctor I had an appointment with the

specialist, ! He diagnosed me with SS ,,, by this time I had just had my third child,,, I was very I'll, I lost 5 stone in weight and had no saliva and I mean none,,,we did not have a computer back then and I knew nothing about SS the doctor offered me anti

depressants as I became depressed I stated to him that one of

the sidel effects was a dry mouth no thanks to that Also I started

to have to have absolutely awful migraine headaches and I still

have them now

It took about 3 years that I started to improve again and with a

small child that was extremely difficult

I just got on with life as I am not one to worry as I believe SS was out of my control ..The years went by and I would have very bad

bouts of fatigue but I went on to get a degree and traveled a lot of the world about 2008 I had to have a break from work for six

weeks I was very sick they could find nothing wrong with me I

had lots of tests done and nothing My symptoms now had

changed

I had inner shaking of my body ,,,,!my musclesson felt like they

Were

burning ,, I could smell vomit all the time and would vomit,,,And

my nerves in my legs began to move and in time this would

spread to my entire body,! I would have muscle aches and joint

pain far worse than what I had previously experienced Also my

hair started to fall out so I take a herbal pill for this,,

And I have terrible dry skin , I put lots of baby oil on every night in my bath. I also have bad inflammation in my body and sits in the wall of my chest and gives me pain

I also began to experience cramps all over my body ,,,hands, back,,, to neck and stomach ,,In the finish I had to give up work in 2012 but the fatigue was very bad

About a year ago I was admitted to hospital I had phumonia and was very ill I went to intensive care and was in life support for 11

days this was complicated by SS I was lucky to be here today

Was has helped me through the years with SS take each day as it comes,,,, diet no sugar,,, no gluten ,, eat lots of ,vegetables, ,fruit

nuts seeds and a small amount of meat,,, I do not eat diary either

Diet is extremely important with SS

Usually if people have a flare it is what they have eaten And the most important for me I do not take any medication at all but for

oNE Sleeping pill ,,,!I take natural things for my joints But will rub a voltaren gel into my muscles I still walk walk everyday I believe over time taking medications makes SS worse over the long run

I was wondering how many other people have had SS for a long

time?. Today I do not work but am very lucky to have a wonderful

Husband, I have 3 cildren and 8 grand children that keep me busy

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