This website has been so helpful already. I am a 46 year old male who after 22 years of confusion was finally told by my oncologist the other day it sounds like I have Sjorgrens which I kinda expected for a long time. Have a couple appointments set up with ENT and eye doc to get the ball rolling and verify. 2 questions before I tell about myself. First, with your dry eyes do others of you seem as though your eyes are bulging out/sunken underneath? Second, as embarrissing as it is to say do others of you ever spit when you talk because your mouth is so dry?
Here's how it all started for me. I have a rare lymphnode disease called Lymphangiomatosis since birth. Cysts would pop up on occasion but were always benign. Had splenectomy when young and numerous cysts removed. I was bit sicker than others at times cause of lowered immune system. Life was good other wise just living with the disease but living a normal fun life other wise. Then in July 1995 life changed. I was playing in a basketball league at church and after maybe an hour I felt nauseous, my neck stiffened up and I got hot and felt like I needed to sweat but couldn't. When i left the building I was fine. Next week when playing the same thing but it would come on sooner by the 4th time or so playing there it was as soon as I walked in the gym. Then my body started to change that month. Looking back I swear it must have been the toxic glued down sports carpeting in that gym where as most gyms use hardwood floors. I still go to church there and I still don't feel right when i walk in to that gym. During that time July 1995. My right Parotid gland swelled up and became rock hard(still is to this day), My vision worsened and my mouth became permanently dry. My tonque got a big crack down the middle and was coated all the time. And my nose would run when doing any exercise or sport. I was a cashier at a grocery store at the time and I noticed people started to look at my mouth when i talked. Too much saliva? not enough and spitting? And one night I woke up with the worst pain ever in my liver and it never felt 100% right since. All that came about in that one month.
Basically for the next 22 years iv'e been to eye doctors, the cancer center at UVA and the one here in town numerous times, heart doctor, ENTs, psychiatrist. Hospitalized for pancreatitis twice. Never got anywhere all these years because they were trying to tie it to the Lymphangiomatosis but that wasnt it at all. I cant believe that some doctor somewhere along the line until now didn't say sounds like a severe dehydration problem after seeing my severly cracked tongue, dark eyes and rock hard Parotid gland. I pray that the next few months will bring some closure and with the help of others here I can find advice to cope even though it cant be fixed. Here are things that it has caused me:
Dry puffy eyes* Severe dry mouth*cracked tonque*Permanent sensitive pancreas*blurry vision*Rock hard parotid gland on right side* Drinking water actually dries me out more sometimes* My nose turns red often* snore from being dry at night*nose runs when working out*hair loss on bottom of shins* Fatigue makes we fall asleep almost anytime I sit down at church or meetings at work etc. *Swollen glands under chin*spit up small amount of blood in the morning if i take pain meds cause it drys me out even more* stiff neck all the time
Welcome to our forum. I do not like saying that as it means that someone else may have this disease. As you may know, Sjogren's is a diagnosis based on elimination. This process typically takes on average 12 years. Often longer for men.
We try to keep paragraphs shorter to make them easier for people with bad eyes to read. Personally I have to increase the size of text so I can read it and I try hard to keep my paragraphs small. Bucky Fuller would have paragraphs that ran 3 pages in some of his books like "Critical Path".
When you visit a doctor always bring an advocate with you. They may say something or remember something you forgot.
Some of us have posted what we are taking in our signatures. Before you try ANY medication or supplement, check for counter indications, drug interactions, and side effects.
I have trouble with traditional medication so I use complementary alternative medicine with traditional western medicine. My understanding of this disease is different from the traditional medical model.
Don't panic: Breath through your pain!
Meditate to help manage your illness.
I do respond to PM's.
So sorry to hear what you've been dealing with. Even going through all those tests is very wearing.
To answer your specific questions, my eyes aren't bulging but I do have dark circles under them now since getting these symptoms, and I'm not dehydrated, I drink a lot through the day. And no, I don't find I'm spitting when I speak - could this be a dental problem? I do always keep sugar-free chewing gum in my mouth and that helps the dryness, also apparently it has some protective effect for teeth.
I hope you have some luck in getting treatment for your symptoms. It takes on average 7 years to get a Sjogrens diagnosis - and of course that may not be what you have. However there quite a few things you can do to help with the symptoms, as you will see on this forum. Bon courage. :)
Welcome Stick,
Ask your questions, share your experiences.
Treat symptoms (humidifier, Pilocarpine/Evoxac for dry eyes, and so many others).
If you get a Sjogren's diagnosis based on blood work, you can surely try Plaquenil/the other DMARDS, for serious symptoms.
Exercise in water (warm) can maintain your mobility and raise your sense of well being, without putting too much stress on joints.
Break your posts into manageable sections, which are easier to read.
Again, welcome.
Regards, Elaine