Personal Sjogren's Stories

For me having Sjogren's syndrome means have dry, gritty eyes all the time and my vision slowly deteriorating and having to carry eye drops and sunglasses with me all the time. But it is so much more than that.  I have to avoid air conditioning and bright sunlight and smoke. Most of my teeth are filled or are crowns and some are crumbling away. My mouth is always dry no matter how much water I drink. I spend a lot of time at the dentist or the doctors. I have adult onset food allergies and am investigating doing an elimination diet to see if the dietician can help me work out what foods I can and cannot tolerate.                                 Posted by Johanna E.
When I was first diagnosed with Sjogren's Syndrome I was told it affected the dryness in my eyes and my mouth and that was all. Over the last 15 years I have more and more symptoms that I have now found out can all be because of the Sjogren's... carpal tunnel in both my wrists and other nerve pains, joint pain and stiffness  in my hands, muscle pain if I overdo things - I get it for 2 days afterwards - and memory problems like not being able to thing straight or remember names.                                                                              Posted by Bill C.

I was diagnosed with Sjogren's Syndrome when I was 49. I had been healthy and active all my life and then got red eyes, burning feelings, irritation, and lots of eye infections. I noticed that when I travelled by plane my eyes became really sore and dry and I was fatigued for days after. I was diagnosed by an eye doctor with a dry eye test and this was confirmed by a rheumatologist that I was referred to later. I was prescribed restasis, loteprednol, omega 3, preservative free artificial tears and doxycycline for the blockage of the meibomian glands in the eyes. 

Before had  Sjogrens Syndrome I use to really enjoy hiking and being outdoors.  

Now I have too much pain imy joints, fatigue and my eyes get worse if I spend too much time outside. 

                                                                                                                                                 Posted by Barbara

My husband was diagnosed with this Sjogrens /lupus/ asthma.  He has had many new problems since diagnosed this yr but the worst is the persistant coughing and gagging every (20 sec). 

my story
I have Sjogren's - it took me 7 years to be diagnosed - at 1st they thought I had MS as a lot of symptoms are the same. I had an MRI which showed is was not Multiple Sclerosis (MS). The neurologist said he could not work it out and sent me to a rheumatologist who did the shirmer's test and said my symptoms were probably Sjogren's. I had joint pain, numbness and tingling in the extremities, eye problems and many other symptoms.  Mine is in remission right now I think - hard to tell as symptoms change so much.
Posted by Le anne

my story
My opthalmologist discovered Sjogren's because of my dry gritty eyes - I manage okay with drops and biotene toothpaste but nothing really helps the gnawing tiredness
Posted by June

They know what i have is autoimmune but they don't know what it is! I've had so many tests. just trying to treat symptoms now. Dry eyes and mouth and skin and burning tongue and aching joints are my symptoms.
Posted by Joan

Sjogren's and hair loss
I have been just diagnose two months ago and since then almost all of my hair is falling out. It is so depressing. My doctor has me on salagen and restasis. Ten years ago they said I had fibromyagia and suffered alot with that. I am 67yrs old I don"t feel old but some days I feel just terrible. Thanks for listening,God bless, Diane
Posted by Diane
I have primary Sjogren's syndrome and am 37 years old. I was diagnosed 3 years ago. I get flare ups after a stressful event like extra workload, for example at Christmas when we had everyone at our home. 

What happens is that my parotid gland on one side becomes painful and then swells up a couple of days later. I have been prescribed prednisone to manage the flare ups. I take Ibuprofen which belongs to a class of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs) and put heat on with a rice pack. It does seem to help but not always. I try to not take drugs as much as possible.

The swelling and the pain go down completely after two weeks. From what I was told by the doctor with my parotid gland swelling up is that it is caused by a decreased amount of saliva coming out of the parotid gland that bacteria finds its way up into the gland and causes an infection.                                                  Janet
Personal stories about Sjogren's Syndrome
Personal stories about Sjogren's Syndrome