as i wrote already and sorry to repeat but i would like to share what happened to me, i believe a lot in the importance of mind for what regards my sj.
since some months i had no more tears when i cry, im sure of this bec just ten days ago i went to the north of france to visit the places where landed the allies and i saw a very moving video.i was very touched and i burst in sobs but no tears at all. this morning i was home and i listened to one of my favourite classic music pieces; when i was a child, centuries ago..., i studied ballet and i felt like i wanted to move with the music, i think that if somebody could see me the result was comic but something very strong came out from inside of me and i burst into tears, many nice tears and for some minutes i also had saliva in my mouth. just wanted to share and know if something similar happened to u
Hi Blue...what a joy to get to see that historic site. Your parents probably had tales to tell of that era.
I haven't had the "burst" of tears as you have had. But I am on Restasis...and it has been used to heal the absence of coating over my eyeball..and damage done from the disease. I don't know if you ever had those conditions. I see you use an OTC drop. Don't recall if you don't have Restasis on your side of the pond.
As to tears where there were none: last summer (yes..a full year ago) I was in my own home watching a sad movie. The ending had a heart rending wrap up at which time I squeezed a tear to the lower lid. I actually touched it. It was one..and only one. After that, I watched every sad movie I could find to cause such emotion. Nothing. Fast forward one full year..this summer and currently: I can "feel" liquid on my eyeballs now when I feel emotional. Since the spring I have been to three funerals. Each time I realized my eyes were wet. It is a wonderful feeling. During several of the Olympics events I felt emotion and again, felt the fluid. Nothing drips out...but hey...this is a start. I have been told my lacrimals are atrophied. No MRI or any kind of test was ever done. So I consider it a guess..and purely anecdotal from my info to dr and his to me.
As to the saliva in the mouth...I don't know that I even realized the two conditions were related until dx. Then I started meds. But amazingly...and again THIS summer, I had to cut back on my pilocarpine by 5mg per day. 5 mg is pretty much. I was on 25 mg per day for about 1 1/2 years. In the early summer, my mouth would be so filled at night it would wake me up. Not just drool...a pool of saliva. After about 3 days of that, I cut back my amounts at the three periods of the day I take it and ended up 2.5 mg less at night than was taking and the other 2.5 mg during the daytime hours. It has been perfect all this time.
I am jealous. Tears and saliva..at the same time. Sounds heavenly. Amazingly those two events you wanted tears didn't result in tears both times. Go figure. Know it is beautiful where you are. Enjoy your lubrications! :)
Sjoldier c3
Hi blue, I also believe in the power of emotions and that they affect most things in this life,
for good and for bad. For me, I have found that remaining relaxed is key in calming some symptoms as well.
When you're trying to "force" emotions like in making yourself cry you're not completely calm.
Besides that, perhaps your spontaneous lubrication occurred through activating the parasympathetic nervous system which is usually involuntary, not forced.
So my suggestion is to continue on your path but try to induce positive emotions (such as tears of joy) through a relaxed state of body and mind. Music and movement are ideal for this purpose as you've already discovered! :)
ccc dont be jealous... i dont have so much saliva anymore!!it lasted the time of music.
Play the music more often? Sound can have an impact on dry eyes and dry mouth. You can find tones for these in my list on Chakraforce.com I find the tones for mumps with male testosterone will cause a remission of some symptoms. My dry mouth improves and so does my dry eyes. It does not improve my sun sensitivity.
if you like the music and it helps you, play it more. Vivaldi 4 seasons has beeb used for years to help people heal.
joe i will improve my listening to music.what is your reaction to sun?
I have been on Restasis for quite a while now and while my eyes are still dry (due to low tear film production) I can cry like a baby. It is a blessing to be able to produce tears, truly cleansing.
I try to avoid crying. My tears are inflammatory and cause my face to burn. :o
no restasis for me, no pilocarpine, no evoxac and no salagen and no plaquenil.
Hey blue, are you alright?
Heard about the earthquake in Italy and was wondering if you're okay?
yes thanks, i live in milan and im quite far from it
Its strange how some doctors tell SS patients that their tear ducts/saliva glands are damaged etc, yet, when most of us cry, we produce tears and then get saliva, runny rose? its great!!! I think our dysfunction is actually a CNS issue.
I cry all the time from being in so much discomfort and pain, and then there is the hormones....yeeeks!!!
Gursie
Blue- that's really good to hear!
Gurs- It's also crossed my mind we may have some CNS issue...
There are now studies which prove a connection between the immune system and CNS.
With SJS specifically the body develops auto antibodies agaist moisture glands so they should become damaged,
but I'm not convinced we all really suffer from SJS if we weren't diagnosed through lip biopsy.
On the other hand, for those of us who definitely have SJS but aren't too far along, I believe that crying and yawning may
cause the moisture producing glands to work harder giving us those tears and saliva.
what is CNS please?
Quote from: bluegardenia on August 28, 2016, 09:12:32 AM
what is CNS please?
CNS.. Central Nervous System
Once upon a time certain TV commerical would have me produce tears upon first viewing. ;)
Since not having tears to cry I observe people viewing me as "so strong, stoic, pragmatic, etc"
What they do not see is that in emotional scenarios my body responds with 'goose bumps', changes in breathing, increased sighing, and such.
Crying is so obvious a social cue. One many of us are lacking. I feel myself to be not totally understood in certain situations.
Others around me crying and I am not. My eyes may water a bit.. but, briefly.
A social disconnect. Unlike those who can cry, I need to use words to express my feeling. (reminds me of Autism/Asperger students I worked with)..and honestly this can be so draining to use words.. when they are often inadequate to convey inner depth of feelings.
On rare occasions I will produce a short cry.. knowing my tear ability.. I know when that happens the situation for me is extreme.
I have read some studies, psychology on the impact on patients who cannot produce tears/ cry; plus biochemical impact of benefits of tears.
In the beginning during a protracted stress.. I even tried standing in the shower pretending to cry to get some emotional relief.. doesn't work :(
So I needed to find other means of stress relief.. that is a lot of pent- up energy.
I hope others find ways to relieve sadness, grief, fears.
In the meantime.. I do what I think of as "Silent Crying". I feel for others and myself even if it is not overt.
I did read once.. and I wish I could find it, an article by a Dr. who expressed his desire for studies and attention by professionals as to the impact of this lack of ability and its' affect on patients.
I looked. Did not find the article, but, I did find this study.
Crying without Tears https://pure.uvt.nl/portal/files/8098276/MCP_Vingerhoets_crying_JoCPMS_open_access_2015.pdf
Reflexive tears from irritation does occur and I just recently learned this is "the Dry Eye Paradox".. so yes eyes can tear and yet patient has Dry Eye Disease (DED). I have this from certain environmental conditions and eye makeup. It is why we need to use eye drops even when our eyes do not "feel" dry.. so a regiment as with medicines. At least morning, noon, dinner, bedtime.
quietdynamics- Have you tried screaming instead of crying to release emotion?
Quote from: Sharon on August 28, 2016, 12:54:56 PM
quietdynamics- Have you tried screaming instead of crying to release emotion?
LOL... if negative stress. I do what I call 'scream singing'.. at home if no one is here, in the car on a drive otherwise. Dear Daughter has joined me in this. We love Benetar. I have a repetoir of songs to fit ' the need'
DH knows my cue when I say I need to go out and dig some holes. Or when he sees me start washing walls, vacuuming, etc.
Depends on energy level.
We make adjustments.
Glad to hear you've found some outlets :D
Help me out here please. We make 2 kinds of tears and I can't remember the whole story right now and am too lazy to do a search. This makes a difference in the tears we produce, etc. Irish
4 types of tears
(http://i.imgur.com/NvS6hhg.jpg)
Wiki show info on tears.. listing 3 categories.
https://en.wikipedia.org/wiki/Tears#Types
there are three types of tears—basal tears, reflex tears, and emotional tears—and that all of these tears are made up of the same elements, with one exception: Emotional tears contain three extra ingredients called prolactin, adrenocorticotropic hormone, and leucine enkephalin.
PAINFULLY PRETTY
Our liquid fingerprints: Micrograph photos reveal the unique beauty of tears http://qz.com/631742/our-liquid-fingerprints-micrograph-photos-reveal-the-unique-beauty-of-tears/
Another poster had (If I recall) posted photos in color in Living Despite Sjogrens.
So my dear in a former life I could cry me a river.
Now I have rivers of silent tears running down my spine.