Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Does crying make SS flare up?

Hello! I'm new here (and usually over at the RA forum), but I just found this group and wanted to ask a question.

I've been crying a lot today and now my eyes feel like I took a swim in a pond full of sand---I know you all understand that feeling! I've been using bottles of gel eye drops all afternoon and am now wearing goggles. You can't even imagine how stupid I look right now---think of a 35 year woman with joints swollen up like melons, filthy hair because I can't raise my arms to wash it, and NOW GOGGLES! Lucky for me, I'm not entered into any beauty pagents. ;)

Is this what happens to SS sufferers when they cry, or have I just gone completely off the deep end? It wouldn't be the first time someone's called me crazy, so let'r rip!

Replies

deleted_user
deleted_user

IM NOT SURE ITS THE SS BUT YES THE SAME THING HAPPENS TO ME WHEN I CRY THAT IS WHEN I CANMUSTER UP SOME TEARS. DO YOU ALSO GET A BLAZING HEADACHE NO I DONT THINK YOU ARE CRAZY AND YOUR DESCRIPTION OF YOURSELF MADE ME FALL OFF MY CHAIR YOU BASICALLY DESCRIBED ME ON A GOOD DAY SO KEEP YOUR CHIN UP AND HOPEFULLY THEY WILL FIND A CURE
deleted_user
deleted_user

Your not crazy I have the same symptoms...eyes swell too...wake up eyes all stuck together and swollen bad This happens if I cry and go to sleep. If I cry they also swell...This is a new symptom...cry-swell....Good luck all Don't give up
deleted_user
deleted_user

I get that weird headache too like the sinus's got messed up due to the crying.
deleted_user
deleted_user

I haven't been able to cry, my eyes have been so dry. I felt like it the other day and my mom looked over at me and said "What in the hell are you doing? Did you eat a sour lemon? What's up?" I said "I'm crying!" and then we both had to laugh, because I just couldn't get a single darn tear out at all, so I just looked like I'd sucked a lemon.
Jeez.
deleted_user
deleted_user

Well, I'm not sure if I should consider myself lucky that I can still muster the tears or feel sorry for myself because I am constantly bawling. Trust me, if I could have worn googles to work today, I would have. The thing that helps my eyes, nose and head is to stick my face in a stream of hot water for as long as I can stand it. That usually helps the joints too, so I can dry off afterward. Hang in there everyone!
deleted_user
deleted_user

Wow. I really had no idea that some people have eyes so dry that they can't produce tears---that surely does $uck! Lh8, your story about looking like you were eating lemons gave me quite the laugh. :)

Txtwinmom, your comment about the water gave me an idea. I take a lot of warm baths to help my joints: I wonder if you disolve maybe a half cup of salt in the bath water to make a nice saline solution, if you could open your eyes under the water to get some relief? I think I might try that if I can find enough salt around here. Has anyone else done anthing like that?

To others who get headaches, yes, I do get them with the eye pain when I'm having crying fits. Not good!

I don't know if other people here routinely wear goggles or not, but when my dad had graves eye disease they were a saving grace for him. It keeps the air from blowing over your eyes when you walk---however I will say they don't do a whole lot to enhance your fashion.

If you don't want to do goggles, another great help are those "Fit Over" sunglasses---these are the kind of sunglasses you wear over regular eyeglasses (though you can wear them without eyeglasses under them too). The reason I love them so much is because they have a plastic pieces on the top and bottom that are similiar to goggles, but they look a whole lot better.

Thanks to everyone who responded, and good luck keeping those membranes moist! :)
deleted_user
deleted_user

I wanted to know if anyone has found a way to decrease the amount of flareups we have
Sillyak
Sillyak

I try to stay away from crying because even though I can produce tears only when I cry it increases my constant head pain. Has anyone found anything that helps the head pain? I usually lie down on a heating pad. Also what googles can you wear to work? I have googles for sleeping.
deleted_user
deleted_user

Well I don't think I could wear goggles to work per se, as that would probably freak the patients out! The kind of goggles I like for home are the kind sky divers wear to block wind (and no, this crippled body doesn't jump out of planes!). Search for "extreme sport glasses." Example:

http://store.outlaweyewear.com/crossthread.html

Personally I've found swim goggles block too much of my side vision, but maybe there are some fancier ones out there that wouldn't be so bad. If you wear regular eyeglasses like I do sometimes, check Walmart (or the internet)for the "Fit Over" sunglasses---I swear by these, and if the lens isn't too dark you can wear them inside (possibly even to work).
deleted_user
deleted_user

Ladies, I just had to share this - I mentioned the prospect of wearing goggles to my mother, who is a nurse that has chronic dry eye due to non-SS medical reasons. She says that when she does not have eye drops handy, she gently massages her eyelids, right under the crest of her eyebrows. According to mom, there are tear glands/ducts there and the massage releases enough fluid to moisten her eyes. That may not work for those that do not have much tear production left, and I am not confident enough of my anatomy knowledge to confirm this, but I thought anything is worth a try if you don't have eyedrops handy!

As far as working with eye-strain -- I work in an office and stare at the compter all day. Sometimes it helps to dim the lights and work only by the light of the monitor. People here do it in efforts to be "green" so I blend right in :)

For those killer headaches, I use a heated corn bag. Someone (sorry, I forgot who it was) posted a "recipe" for a rice sock which is basically the same thing. I put the heated bag around my neck and it is portable enough to take to work and re-heat in the microwave any time.
deleted_user
deleted_user

hey--yea, crying does in fact release tears that are chemically different from the moisurizing tears your eyes make under normal circs as they contain more toxins and those chemicals do irritate sjogrenized eyes.

crying is also thought, i'm not sure if it's been demonstrated scientifically, to reduce stress and so to be a good thing for the system as a whole.

i have read several times, please don't ask me where, that it may be the release of toxins via tears that actually reduces some effects of stress. i don't assert that this is true. i'm just reporting what i remember reading on several occasions. will see if i can find further info eyes permitting.

my solution? on the rare occasions when i do cry, i wash my face and eyelids thoroughly ASAP with cool water. then i rinse them with normal saline, not my more expensive eyedrops.

i'm one of those people who was raised not to cry and so i only do so when totally overwhelmed after which i invariably feel much better and can move on. so for me, it's a choice between reducing overall stress by somehow letting crying happen and dealing with an increased in eye pain.

if i apply water tx STAT, i have relatively little problem. i don't know how this works for people who cry a lot. worth a try, though.

re: normal saline

i get my rx to order dey's sterile sodium chloride inhalation solution, .9%. it's isotonic, comes in packages of 100 individual 3 ml recyclable vials. they last me for ages since i only use them for specific rinsing needs, like crying or when i just need a real whoosh of moisture. i follow that w/ whatever lubricating product i'm currently using. sometimes if i've got a really painful, scratchy spot my partner will just flood my eye[s]. also useful after visits to eye doc as the drops for dilation make me sick as a dawg and after all that messing about, i need a good drench. :)

here's a link if you want and the NDC # is below that [it will help your rx person]. you do not need a script.

http://medichest.com/sodiumchlorideinhalationsolution09dey100x5ml.html

NDC 49502-830-03 [that's to help your rx person order it for you]

hope this helps. :)
deleted_user
deleted_user

Oh, Bless your little heart !! I'm sorry for laughing, but the mental picture of you sitting there, wearing swimming goggles has me rolling !! I'm sorry ! I'm sorry.....I just can't help it. I sober up, then I start again. Lol
Ohhhh, I DO feel sorry for you. I DO understand not being able to wash your hair, or after it's washed, not being able to do anything with it, so it looked worse than before it was washed.
I understand not being able to bend enough to shave your legs, or put nail polish on your own toenails. I've been there too. :)
But I CAN promise you this......there WILL
be better days than this !! Just keep Plodding along.....you can do it !
As for the crying, I have the punctal plugs in the lower tear ducts. This helps what moisture is there, to stay there. So occasionally I do have real tears.But not enough for a crying jag. I am sorry that you feel so miserable about something, that you are crying.
I will share a "funny" with you.....one of my friends plays the organ for a local Funeral Home. Most people ask her how she can play for a funeral and not cry the whole time. Well, what she doesn't tell them is....
she has Sjogrens, and nary a tear falls. lol She is sad of course, and it does affect her, but she believes that this is something she can do, a gift if you will, for the family. She never accepts money. So she has taken this "lemon" and made "lemon-ade" out of it.
One more thing....Have you ever thought about keeping your eye drops in the refrigerator ?? The COOLNESS of the eye drops will soothe your eyes. I keep mine in the door, in the butter keeper. LOL ( the drops HAVE to be preservative free ) If you are using prescriptions drops, ask the Pharmacist before you try this. Some of the prescription drops can't be kept below 55 degrees.
Here is a hug {{{ HUG }}}
Hope the rest of your day is better.
deleted_user
deleted_user

I wish I couldnt cry. I have been crying all day and my eyes are already huge. Tomorrow will be worse. Now that I stopped (I think) I will need to put the ice packs on. I will look like an alien tomorrow. bummer
RTZJ9
RTZJ9

I have a hard time starting to cry but once the tears work through the grainy stuff they come. I think it is theraputic to work out all the clogging white blood cells on a regular basis. I still have dry eyes but they seem better after a cry even if they appear a bit swollen.
deleted_user
deleted_user

I have been crying my eyes out as of late but I really don't experience any problems. However, I do have punctal plugs and that may be the reason why I'm not experiencing any problems. You may want to check with your ophthalmologist for further tips in addition to what the forum is suggesting as to how to deal with the challenges of the aftereffects of crying and perhaps ask about punctal plugs.