This post is a little later than planed, mainly because I have been suffering with my hands recently making writing a little harder than normal. Also I would like to make an apology, as even though I have Sjogren's Syndrome I cannot get the spelling of it right...just one of those words that won't stick in my mind. However I am going to attempt it in order to raise more awareness and give as much practical or positive advice as I can.
So here goes......
What is Sjogren's Syndrome?
Sjogren's is another autoimmune connective tissue disease, where quite simply your immune system is attacking your fluid secreting glands. That is the simple version, but as with every autoimmune disease it is never always simple. You may find that with this syndrome you have a constantly dry mouth and eyes, which is the most common first presentation of the disease. However, it is not limited to just this area, it can attack any part of the body where fluid is involved, such as the kidneys, central nervous system and the heart. Essentially draining your organs of vital fluids...not something that any of us wants to consider.
Another complication is for women that fight off Sjogren's it can cause unpleasant vaginal dryness and lead to infections...I don't think I need to say anymore about that...but bear it in mind.
Along with the above symptoms, you may also get bouts of extreme fatigue, joint stiffness, joint/muscle pain and issues such as mouth ulcers due to the dryness.
There are two types of Sjogren's Syndrome, primary and secondary;
- Primary Sjogren's is where you are diagnosed with this as the stand alone diagnosis.
- Secondary Sjogren's is where this develops as a direct result of another disease or alongside another disease - this is the case with me.
In terms of what causes it, well it is the same as many other autoimmune diseases...we simply don't know and much like SLE or MCTD there is no cure. It is another 'treat the symptoms, control the progression' disease.
Sjogren's is a fairly common disease affecting between 3-4% of the UK population, with many people going un-diagnosed.
How Sjogren's affects me...
In comparison to some of my other medical issues, this is one that I can handle most of the time. I am lucky in many ways as this syndrome is not as apparent as my other auto immune issues...this does not mean though that it doesn't cause me any symptoms. Actually, at diagnosis, this was the one syndrome where the pieces of the puzzle fell together.
One thing you should know about me is that I am always thirsty...I am never without a drink in my hand. When I was little there were moments when my parents were concerned about this...I was checked for diabetes and other times my thirst was put down to allergies (which is just odd in itself). Finally I had a reason for my incessant thirst - my mouth and throat were completely dry! I still suffer with dry eyes and mouth...I still drink a phenomenal amount of tea daily, but at least I know why now - that makes a lot of difference.
The most uncomfortable symptom for me is the dry, scratchy eyes. The only way I can describe it is like the worst case of hey fever, with the scratchy eyes, but there is very little relief. I use over the counter eye drops when they are needed, just to keep my eyes moisturised, but I do feel very little relief often and I just have to ignore it.
Ways I have found to combat some symptoms...
It may seem that combating the symptoms is simply down to drinking more and eye drops, but there are some real risks associated with the symptoms which is why there are some things that I a diligent about.
Starting with keeping your oral hygiene in check. This may sound utterly ridiculous, but having a constantly dry mouth leaves you open to infections, especially if you have ulcers caused by Lupus or other conditions. I know sometimes people think I am crazy for the amount that I brush my teeth, but I am very diligent about this. Also I have suffered from many broken teeth due to the Sjogren's, something you need to keep in mind if you have been diagnosed. My teeth are atrocious and very fragile, so I use special tooth paste to help me keep them.
This is the same with your eyes too. Along with eye drops, I make sure that I get regular eye tests as Sjogren's can cause eye damage in the future. The uncomfortable itchiness is also an issue when it comes to my make up choices...let me put it this way ladies...you will want a mascara that is natural product based, nothing that is going to irritate your eyes - I would say I only wear eye makeup a couple of times a month.
Other than this, the majority of the Sjogren's symptoms are the same as the SLE symptoms...joint swelling and pain with fatigue.
