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I am a nurse
I have been out of work for 7 years due to pain--so bad i cannot get out of bed sometimes.
Bad headaches/swollen joints with pain/swollen face(where your parotid glands are)-dry eyes dry mouth etc....

I have multiple diagnosis about 10 I think--no one is really sure,I have had every test done known to mankind-even went to the specialists and hospitals in NYC and Boston.

I have been told I have

I have Rheumatiod Arthritis

fibromyalgia

sjogrens

osteoporosis

lupus

ankylosing spondylitis

vitamin deficiencies

Lyme disease

I could go on and on

Pain????? yes and I went to 4 different pain clinics trying to find something to help.

That is hard to do when you are in crazy pain.

I took every NON narcotic known to mankind and will still try every new one that comes out.

Once I found the right pain clinic

I was given MS Contin--that didnt work

Vicodin didnt work

Then one day Kadian SR (a form of morphine)

since then I am up and walking my pain is more under control than it has ever been.
I thank God every day for this medicine.

My blood work is always a mess but never anything definative

although both my anti bodies for sjogrens were positive/which means I have it.

sed rate is high/arthritis

tests have shown osteo

Being a nurse I study all I can,,,,,,and I am hearing things in research about

''maybe it is viral''

''that all autoimmune diseases are really one in the same combined with different parts of that illness showing up differently on each individual.""

I had to learn to stop worrying about ''what it is''

and just try and keep the PAIN under control.

Hot packs on my face when the glands swell up

eye drops

optician every 6 months

special tube of oint to make saliva in my mouth

lotion to my skin

Dentists for cleaning every 3-6 months

Make sure your friend has been tested for Celiac antibodies-
and they don't do them unless you ask for them------
this disease has the same symptoms
and if you are positive
you go on a gluten free diet and usually that takes care of it.

My docs said to try a Gluten free diet even though my tests were negative just to see if it worked.It didn't
But everyone should try it.

The only medicine I have ever been given is plaqunel--which I had a reaction to and lost some vision from permanently.

That is another issue--never in my life have I been allergic to anything--now everything is an issue--sjogrens brings with it many allergic reactions,

God only knows what it is doing to the inside of my body? It affect major organs kidney/heart/lungs.

I was healthy all my life until this mess-
I turned 50 this year and had 3 heart attacks in a row
followed by emergency Cardiac Quad Bypass.....go figure???
no signs of anykind.

After being disabled with pain etc---I started to train myself for meditation
started doing yoga
started counselling--just to deal with pain and disability

You have to be good to yourself and learn ways to appreciate small things in life

This disease changes you

You have to change yourself in a good way to survive it all

sorry this is so long I just know what it is like to be out there and no one can hear you!!!...........Lynn