New fixation - Sjogren's Syndrome

[DaisyP]

Hi guys,

So I am moving on from the MS fear - I am yet to have my MRI but I am feeling ok about it.

My new fear is Sjogrens syndrome. For a while now I have had really dry eyes and put it down to a change in hormones but for the past week or so my mouth has become really dry - i am not on any meds that can cause this. I put this on another thread and I know that anxiety can cause a dry mouth, I also have a bit of a bunged up nose so am probably breathing through my mouth more but it's like i cannot quench my thirst at all, talking becomes a bit difficult because of the dry mouth feeling and am constantly having to drink.

Anyway, sjogrens is normally a secondary cause of something else and they say arthritis is the first cause and over the past few weeks i've noticed everything hurts more, like my knees and my fingertips have started to throb, and then it goes away for a while.

I know with Sjogrens you can have a blood test which looks at your antibodies and because it's an autoimmune disease it does normally show up in your blood. I have worried myself sick about it - i am trying my hardest not to google. It's obviously not as bad as MS but it is still debilitating so i am really worried. Funnily enough it can also cause tingling and numbness which would make sense.

Would you go to the dr to ask for a blood test and to discuss the possibility of having it?

[MrH]

If you're worried it doesn't hurt to mention it to a GP, but also look at this way - you've seen several experts in their field for MS, and not only were you clear for that, but none of them have come up with anything else. It's very unlikely a non-medic doing some worried Googling would find a solution that they hadn't even thought of. ;)

And if it's a secondary result of arthritis it wouldn't be you noticed this and then start aching.

All your symptoms still point to anxiety, maybe mixed with a cold. You need to stop worrying - you've got a clean bill of health. "Just" the anxiety to deal with...

[Mindknot]

Yeah, I worried about this for a bit... but there's really a lot of things that can cause dry eyes and a dry mouth - heating, being inside a lot, anxiety, staring at computer screens... Just adjust your habits a bit and it will probably go away.

[DaisyP]

Thanks guys. I appreciate it, it just seems that it fits the description of how i am feeling to a tee, more so than MS and that is what is worrying me so much. Mindknot, did you have dry eyes and mouth together?

[Mindknot]

Yep. I still have dry eyes, I sit in front of a computer all day, but I turned the heating down in my house, drank more water and started to work on my anxiety, and I would no longer say my mouth was dry... except when I'm thirsty of course, but that's how it's supposed to work :D

[DaisyP]

I do think heating has a lot to do with it because of it being winter. I am drinking so much but the feeling never seems to disappear and i constantly feel like i need to keep drinking, is that how you felt? I feel like it's the sides of my tongue and my saliva feels thicker somehow?

[Fishmanpa]

I just want to point out that you specifically refer to this as a "new fixation" and "new fear". They're not real. They're imaginary and brought on by anxiety and Dr. Google. You're also displaying the classic shifting of disease and symptoms indicative of HA.

Positive thoughts

[DaisyP]

Fishmanpa, you raise a good point but my health anxiety doesn't tend to move around too much. I never worry about Cancer, heart etc..but my symptoms match this disease almost entirely :-(

[Fishmanpa]

Fishmanpa, you raise a good point but my health anxiety doesn't tend to move around too much. I never worry about Cancer, heart etc..but my symptoms match this disease almost entirely :-(

And a classic case of the "yeah buts" ;) This is a health anxiety forum. The fact you're here speaks louder than the symptoms you speak of. Having looked at your post history, I didn't see any diagnosed medical reason for your symptoms but they sure do match the list of anxiety symptoms as well as many others who post similar issues. If you're that concerned, get tested and be done with it. When you're given the all clear, it would be prudent to treat the real illness.

Good luck and positive thoughts

[DaisyP]

Thank you. Do you think it's more anxiety than than a possible disease?
Maybe I'll see the Dr and see what she thinks. The worry is awful!

[MrH]

my symptoms match this disease almost entirely :-(

Obviously no-one here's a doctor and say for sure, but as I said, I'm sure this would have popped into the doctor's minds in your previous check ups if you were showing signs.

Also part of talking myself out of HA is to take a deep breath and remember you're totally unqualified to make any diagnoses. This is not putting you down, but if it was as easy to diagnose yourself with a disease by Googling a bit, no-one would bother the long, arduous process of going through medical school. You only know what you know from reading simplistic, bullet-pointed symptom lists (bumped up the page rankings not from authority but by the number of worried people that read them), that give a blunt, un-nuanced versions of a disease for laymen to (mis)understand, or perhaps more complex papers you have no way of understanding fully without a medical degree.

One thing all of us with HA or suspected HA is to remember is this - we're not in the slightest bit qualified to diagnose ourselves with anything, and to think we are is incredibly presumptuous!

We also have to remember that while anxiety seems to throw up a lot of weird symptoms that make you wonder about other things, anxiety is also very very common, far more so than any disease we start thinking we have. Chance is on our side.

And finally think about this feeling and compare it the last time you were certain you had a terrifying disease and was proven wrong, and the time before that, and the time before that... it's no different now is it?

So maybe see a doctor for peace of mind, but I'm sure if this was a possibility the doctor's would have looked for it. Hope you're feeling better soon. :)

[pb]

I have had a dry mouth and eyes on and off for about a year.
It gets better when my health anxiety moves on to another worry and then comes back when that worry disappears. I have been to the optician and I do have slightly dry eyes.
I have worried about sicca syndrome and maybe I have a mild form, but I also know that it could be anxiety that causes very real symptoms.
The more I focus on the dry eyes and mouth the worse it gets !
Hope this helps..

[Serenity1990]

I went through the Sjrojens thing. It wasn't very scary so it was quickly forgotten about.

[Fishmanpa]

One thing all of us with HA or suspected HA is to remember is this - we're not in the slightest bit qualified to diagnose ourselves with anything, and to think we are is incredibly presumptuous!

With the exception of the anxiety/HA itself! :winks:

Positive thoughts

[DaisyP]

Did you Serenity? Did you get both dry eyes and mouth? It seems a tad better today. My understanding is that it doesn't go overnight!

[Toronto girl]

Daisy have all the neurological symptoms you described a while ago gone? You haven't mentioned them. That would be nice.

[Serenity1990]

Did you Serenity? Did you get both dry eyes and mouth? It seems a tad better today. My understanding is that it doesn't go overnight!

Yeah. TBH with the amount of evaluations you've had I highly doubt you have that. But the way I look at that one is it's a bit like worrying that you're an eczema sufferer: you'd rather not have it but if you did it'd be little more than a pain in the arse. It is not something that will kill you, disable you, or alter the path of your life in any way.

[DaisyP]

Thanks serenity. That's true. Well they don't know about the dry mouth, just the eyes. But I have an opthomolgest appt because I have loads of eye floaters at the moment so will talk to them. It's normally a secondary disease from a primary one, like arthritis. So
I'm worried I have that starting too.

TorontoGirl, no they haven't :-( Still in full force. We are picking our new puppy up Sunday so I'm hoping my symptoms will disappear. Not that this is the reason for getting a puppy of course but dogs really help my anxiety so fingers crossed he will help :-)

[Serenity1990]

Arthritis? You're in your twenties though aren't you? I know there is a type you can get when younger but I think your chances of having these two are probably incredibly slim.

Why do you keep ignoring the elephant in the room? You know you have an illness which is known to be the most common cause of all the things you describe, yet you choose to disbelieve it's causing it. Do you not believe you have anxiety? If not, how come you're on an anxiety forum?

[DaisyP]

I know you're right serenity but I just can't believe that anxiety can cause this many symptoms. I do suffer with anxiety but sometimes, like today, the fatigue is killing me! My vision keeps going in & out and my throat is so dry no matter how much I drink. My tongue also feels really weird and rough!
How long did your dry throat last for?

[Fishmanpa]

I just can't believe that anxiety can cause this many symptoms.

http://www.nomorepanic.co.uk/articles/symptoms

Positive thoughts

[Serenity1990]

I know you're right serenity but I just can't believe that anxiety can cause this many symptoms. I do suffer with anxiety but sometimes, like today, the fatigue is killing me! My vision keeps going in & out and my throat is so dry no matter how much I drink. My tongue also feels really weird and rough!
How long did your dry throat last for?

I can't remember tbh. I used to get it quite a lot.

You wouldn't do this with any other illness. If you had eczema you wouldn't be consulting in bafflement as to why your skin was itchy, you'd think "that's the asthma". If you had an astigmatism you wouldn't be running to the optician wondering why you had monocular double vision, you'd think "that's the astigmatism". If you cut your finger you wouldn't be running to the doctor confused as to why your finger was bleeding, you'd think "it's bleeding because I cut my finger".

Here you have an illness, you (totally unsurprisingly) have the symptoms of it, yet you panic when you get the symptoms and start hypothesising everything from the unlikely to the inconceivable, staring the patently obvious in the face. Which is in itself an anxiety symptom.

[Toronto girl]

Fishmanpa that list is great. My concern is that the tingling it talks about is in the feet and hands. What if mine is in the skin of my legs, minus the feet? I wonder if that can be anxiety. It is almost all the time except when I am in bed at night.

[DaisyP]

Thank you serenity, I know you make a really good point. I need to work on the anxiety. This dry mouth feeling is awful! It feels different from normal anxiety dry mouth as normally when you settle (which I have) the normal mouth feeling returns but this just hasn't.

TorontoGirl, mine is everywhere, not just hands and feet x

[Toronto girl]

Daisy, I hope getting your new puppy does the trick - gets rid of your anxiety!

[Serenity1990]

Fishmanpa that list is great. My concern is that the tingling it talks about is in the feet and hands. What if mine is in the skin of my legs, minus the feet? I wonder if that can be anxiety. It is almost all the time except when I am in bed at night.

Tingling in the hands and feet is common in anxiety because it's caused by over-saturation of oxygen through hyperventilation; this type of tingling tends to be very acute and last as long as wheever panic is causing the hyperventilation. Tingling everywhere else is caused by hyperexcited nerves, which is where anxiety has exhausted your nervous system, and tends to be more chronic.

As much as thay list is good it's more focussed towards panic. Anxiety that causes more chronic symptoms (which falls more under the realm of BFS in my humble opinion) due to having completely fried your nervous system is a completely different thing.

[Toronto girl]

Thanks Serenity. You make a good point. I have been chronically freaked out for a long time and that is not good.

[misterbubbles]

I have had a dry mouth and eyes on and off for about a year.
It gets better when my health anxiety moves on to another worry and then comes back when that worry disappears. I have been to the optician and I do have slightly dry eyes.
I have worried about sicca syndrome and maybe I have a mild form, but I also know that it could be anxiety that causes very real symptoms.
The more I focus on the dry eyes and mouth the worse it gets !
Hope this helps..

Hello. Im very scared at the moment about my dry mouth. Just absolutely freaking out. I have had this now since July of this year. So going on now about 2 months. Im honeslty wondering if and how anxiety could cause anything like this. Is it really possible. I am so dry at the moment that i feel that i dont have any saliva at all. And that is no joke. So very dry throat and mouth. No saliva!!! I had very bad stress and then have become fixated on this issue. Its about all i think about. Wakes me up a few times in the night etc. Im just wondering how long something like this could really go on for. I have never had anything like this in the past. It all started with my tongue getting sore when i was speaking. Now talking has become really tough. I have been to the dentist twice now and she said she thinks its anxiety. Im a male, 44. Also have dry nasal passages. But yes super scared here and wanting to hear from others about how real this can really get. Thanks so much! C

[misterbubbles]

Thank you serenity, I know you make a really good point. I need to work on the anxiety. This dry mouth feeling is awful! It feels different from normal anxiety dry mouth as normally when you settle (which I have) the normal mouth feeling returns but this just hasn't.

TorontoGirl, mine is everywhere, not just hands and feet x

Hello. Im very scared at the moment about my dry mouth. Just absolutely freaking out. I have had this now since July of this year. So going on now about 2 months. Im honeslty wondering if and how anxiety could cause anything like this. Is it really possible. I am so dry at the moment that i feel that i dont have any saliva at all. And that is no joke. So very dry throat and mouth. No saliva!!! I had very bad stress and then have become fixated on this issue. Its about all i think about. Wakes me up a few times in the night etc. Im just wondering how long something like this could really go on for. I have never had anything like this in the past. It all started with my tongue getting sore when i was speaking. Now talking has become really tough. I have been to the dentist twice now and she said she thinks its anxiety. Im a male, 44. Also have dry nasal passages. But yes super scared here and wanting to hear from others about how real this can really get. Thanks so much! C