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 think 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


undiagnosed
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

 

My Story - My name is Alison I’m 43. I was an Aged Care Nurse and I had never heard of Primary Sjögrens Syndrome until I was finally diagnosed last year. 
But 2 years ago I had a random blood test done, I was seeing a skeletal specialist as I’d had a car accident 1 year prior which was causing chronic pain.
I wasn’t sure what the doctor was checking for, the results came back and the doctor told me I had an autoimmune disease where the body’s immune system wrongly attacks the body; more tests were needed to find out which Autoimmune I had.

I was completely shocked to receive this information. I was refered to a private Rheumatologist to diagnose what autoimmune I had out of Rheumatoid Arthritis which causes joint pain, Lupus which causes skin rashes and Sjögrens which mainly attacks the tear & salivary (exocrine) glands.

I thought this isn't too bad I can live with it. I put this information on the back burner, I didn't want to deal with this at this time, with a diagnosis of a permanent neck injury and 3 bulged discs, 2 pushing into my spinal cord causing reffered pain down my arm. I just couldn't deal with anything else.

10 months later I began having severe cramping in my hands, dry eyes and dry mouth all of a sudden it got really bad. So I asked my GP to send me to a Rheumatologist. Our hospital waiting times to see a Rheumatologist have been about 6-8 months then every 6 months so getting onto treatment feels like it's taking years.

The main symptoms of dry eyes and dry mouth, this doesn't sound too bad right? That's what I thought until I learnt more about the disease. In reality Sjögrens has destroyed my quality of life and yet no one can see it from the outside. Most days you can look quite normal but inside your body is a battlefield. After the last 2 years suffering from this disease it has taken its toll on my appearance, mental health, my relationships, my joy in life.
The disease is systemic and can affect any other organ: heart, kidneys, lungs, liver, pancreas, kidneys, gastrointestinal system, blood vessels, brain and nervous system. Currently I'm experiencing chronic pain, extreme fatigue, joint pain and am currently having tests for lymphoma. 

Sjögrens has caused me to give up work; it's a very depressing thing to be in your 40s working full time then suddenly you get really sick and are told we think you've got an autoimmune disease, there is no cure and life as you know it is gone. I went through a mourning period, mourning the life I thought I was going to have. The disease has hit me hard, affecting my nerves, causing neuropathic pain, Fibromyalgia, Tendinitis, brain fog, chronic fatigue, joint pain & stiffness, difficultly showering, difficulty with performing household chores; it has left me feeling like a punching bag. 

I suffer with Raynaud's phenomena, this is common in Sjögrens Syndrome - it is an interruption to the blood flow to the extremities (fingers & toes) the fingers change colour white, blue, purple, numbness, cramps occur. This was very scary the first time it happened, which was in the middle of a crowded restaurant. My thumb cramped and my fingers turned white, then blue I couldn't even hold my cutlery to eat for about 10mins I felt really embarrassed 😳 

Knowing the symptoms of Sjögrens I would say I've been misdiagnosed for the last 5 years. I would have to recommend 'The Sjögrens ' Book by Daniel J Wallace, a must read for anyone with Sjögrens, it's very informative.

I've been feeling like life is a loss lately as I've been getting sicker day by day mostly with fatigue sleeping so much. I explain fatigue as you have a battery that's out of charge and when you're sleeping your body tries to recharge it but the battery just won't hold much charge anymore. 

I decided I was capable of running an online campaign to help raise funds for Autoimmune/Sjögrens Syndrome. The charities I have chosen: ( No Funding is received from state or Federal Governments) are
TASSA - The Australian Sjögrens Syndrome Association - they help provide information to patients with the disease & initiate research in Australia to find treatments and a cure.
ARRC - Autoimmune Resource & Research Centre - they help improve health & quality of life of patients with autoimmune diseases through education, empowerment, advocacy, screening & research. I ask for your donation and help find a cure for Sjögrens Syndrome. Regards, Alison Bovey