Sjogren's Syndrome

[Tanzanite]

Can this be related to POTS or more likely to get it due to all the auto-immune conditions that seem to develop with it?

I think I may have it. I already have pustular psoriasis and high thyroid anti-bodies which are both auto-immune. For last few months I've had a really dry tongue and throat, my tongue feels like it's shrivelled up it's so dry. The rest of my mouth isn't so bad but still get's dry at times.

My eyes are terrible! They feel so gritty and sore, sometimes feel a bit swollen. If my eyes water or I cry, they sting like mad so I can't open my eyes, like someone has dumped a load of salt in my eyes.

Even the back of my nose feels dry.

I've been using some Biotene dry mouth gel, mouthwash etc which has helped a little. I just can't believe it looks like I may have developed Sjogrens now (I can't even pronounce it!). As it can be connected to connective tissue conditions, does EDS count?

I just seem to be developing more and more things as time goes by and I'm really fed up.

I'm already suspecting I may have Chiari malformation (and really suffering with the symptoms of it) and need to sort that out too.

I could just scream right now.

[corina]

hi,

i don't think sjogrens is related to pots, but more an auto immune disease. i know a girl who has sjogrens, who has had some very serious internal infections. she is always very tired, has very irritated eyes, has to watch very carefully what she eats (no mushrooms, tomotoes and lots of other food) and she can't work. as we are in the same (chronic illness) boat, we understand eachother very well and try to visit when we can.

oh, and the screaming might be a relief! you find yourself a nice place (where no one is watching or listening) and just scream ahead

take care,

corina

[doctorguest]

It's may be worth checking for Sjogren's with certain antibodies and a rheumatology consultation. Since you seem to have several autoimmune issues going on (like psoriasis and antithyroid antibodies), it would be a good idea to explore this and other autoimmune conditions. POTS can be of autoimmune origin in some patients - there is a specific antibody present in 10-14% of POTS patients, but conversely, dry mouth and dry eyes can also be a feature of "just" POTS.

[Maxine]

Although I don't think I have sjogren's syndome, I often wonder if I have something more autoimmune going on. My thyroid anti-bodies are high at over 1,600, when the normal readings are around 35. (I have hashemoto's thyroid disease). My knees developed a rash on them. It comes out when I have some kind of stress on my body. It's raised flat looking hive type rash. Some are the size of a average finger tip , or bigger. I have no idea what this is, but it continues to come out---and only on my kneee caps. -------

I see so many docs that I have put this rash thing on tha back burner and have not seen a dermatologist. My skin all around my neck area, in the front spreading down into the chest has an odd feel to it. That is where I had my anterior diskectomy/fusion. The skin around that area is just different now. I have also found that if I look close at the edge of my jaw bones, my skin has some mild darker pigment changes.

This is something for another time to check out, but it's an interesting subject-----------(POTS possibly having a autoimmune link).

My mouth is very dry, especially in my sleep. Cotton mouth. Sometimes it can be so dry, and drinking water doesn't seem to help.

I just can't imagine seeing another doctor right now. Next week I see an orthopedist for complications from my EDS-- .

We have to drive to Cincinnati-------------------about a three hour drive.

Tanzanite, I can surely understand why you want to scream. I have meltdowns sometimes-------I just sit and cry.

My husband worries when I'm like this, but I often feel better getting it out.

Maxine :0)

[Tanzanite]

I have EDS and when it was diagnosed they said autonomic dysfunction goes with it so I think the POTS is connected to EDS with me and also a genetic thing as several people in my family have EDS and also some symptoms of POTS.

Auto immune diseases run in my family, mainly thyroid, pernicious anaemia.

It's so frustrating when every year or two, I get something else. It's a full time job just looking after my care needs!

I wish I could cry but it makes me ill