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Sjogren's Syndrome Support

I hate SS more and more every day!

If the unpredictable symptoms and no one understanding wasn't enough! I realised with heartbreak some of us have no release. I need to cry so deeply but can shed maybe a tear or two. I used to hate crying because of the stuffy nose and occasional headache after. Now I wish I could! No release of this inner pain hurts as bad or more so than the physical pain. I feel even more like a freak. Add that to the emotional and I feel like I am going to explode! What do you do to handle a situation where the only cure is to let it out but you are physically unable to?

Hi Jonchri,

So sorry to hear you are going through such a bad time. I understand what you are saying about the need to cry and not being able as it is am important way of release being able to cry.
I just wanted to let you know I was thinking of you.

Hi Jonchri, I hear you and I feel your pain! Just know that you are not alone. I am thinking about you and I will pray for you!

I too need a cry aND can’t.I have said to my daughter on numerous occasionso that I would cry if I could. And no one understanding that makes me want to cry. I’m having a very hard time lately



terriba said:
I too need a cry aND can't.I have said to my daughter on numerous occasionso that I would cry if I could. And no one understanding that makes me want to cry. I'm having a very hard time lately

It makes us want to cry double, doesn’t it? I am so sorry for you and anyone else who endures this with us. People sometimes look at us as if we are cold fish, with no empathy or feeling. I have even wondered myself at times if I have grown hard hearted. Then I’d need to cry. I can learn to cope with everything else with SS. This is one thing I will never adjust to this.

I too wondered if I had become cold hearted. Then I was diagnosed with SS and finally realized that that was the problem.

Hi Jonchri.

The inability to cry is indeed very frustrating. I was diagnosed with SS eight months ago. This is a struggle that we are all in together.

Totally been there…I had 2 different wakes to go to recently and wonder if people think I am cold because I don't even get teary eyed. Its weird….

I still get the stinging, then nothing other than the inner pain. I am still reeling from what happened. All I do is eat, sleep, ànd lose myself watching TV. The TV thing is weird because I don't normally care much for it. I just can't seem to deal with what happened or this stupid disease

Jonchri,



For a long time I had very dry eyes by I could cry, a dr even explained that they come out of a different part of the eye.
Now I can’t, thought it was just me, so sorry to hear you are in the same boat!
What I need the most these days is a long long bawl…
It is awful to keep it all inside.

Oh my goodness, can I ever relate to not being able to cry. I, too, used to hate the stuffy nose and headache from crying.. Now, for over 10 years, not a tear. I miss the emotional release. There have been times when I have been upset to the point of having dry heaves and high anxiety, but not a bit of relief from the act of crying. And when my Godson was buried 10 years ago today (he died at only 24) I was the one person close to the family with no tears. Felt like I appeared to be cold hearted , but . I reminded my Godson's mother of why I couldn't cry. It's important to share with people. They understand when you explain it.

Sorry to hear that you are going through this. I guess I'm lucky every now and then I do indeed cry (extreme emotional pain or physical pain) allows the water to leak out... but at a high price. Days (3 at least) of red, puffed up, irritated gummy/gritty/tired eyes with headaches and sensitivity to all sorts of stimuli. Then all the extra eye drops for recovery. These pools of water are not the refreshing tears of years ago, I too miss that feeling. How to handle letting it out when you can't: anger- tear up bits of paper, sadness- hug cuddly things/ or cuddly people. You don't sound like a freak to me- your eyes aren't the only ways to show your sadness, the colors you choose to wear, the overall body language you exhibit, and if necessary pre-written signs that others can see should help with letting others know you still care you just have no extra water to share anymore.

Thank you all for the good suggestions. I feel that using Restasis has helped me a lot, plus a nighttime gel. On top of that my eye doctor put "special-order" plugs in my tear ducts. I think they were the biggest help of all, as I have gone a year now with no eye infections. It took 3 tries to get the right plugs. Good luck everyone! I'm happy it's springtime. No freezing temps and the air conditioning isn't on yet so a wonderful break from my Reynaud's. LOL