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.
Hi all, For years I have been disregarding my Sjogrens because when I was diagnosed with it the doctor played it this way: "Oh you have Sjogrens, its no big deal, just dry eyes and dry mouth. Just chew gum and drink a lot. I will give you samples of liquid tears." Thats it. I never knew it could cause organ involvement. I never knew it could kill you! What is the matter with supposedly responsible doctors who must first promise to ..."do no harm"....what is that??? They are definitely harning us when they tell us that Sjogrens is no big deal. Not to mention the psychological side of it. I am sure my aunt had and still has Sjogrens because she had beautiful teeth (we all do in my maternal side of the family) and when she was in her 50's she had to have them all pulled out and have dentures made. They were saying it was because she drank too much soda. Well, it sure is funny that her opthalmologist is always letting her try out new drops for "dry eyes" as well. She has never been diagnosed but I know she has it. She is my moms twin sister and so that makes her almost like my mom as well.
Anyway, back to this flare thing I have recently experienced. I woke up two nights ago at 2:00 am and felt absolutely horrible. My ears kept popping and I could tell there was liquid in them. My eyes hurt so bad I could not open them. When I did and looked in the mirror they were completely red and also red rimmed. My mouth was very dry but I felt like I was nauseous so I did not really drink or eat anything the whole next day. All I had the whole day was 2 small cups of tea and 2 ice pops. The thought of any other type of food made me feel sick. I also felt like something heavy had dropped on top of me and no one came to take it off. all of my joints and muscles ached. I had a horrible headache and could not move my head without feeling worse or dizzy. The two days leading up to this gave me some sort of warning by me waking up in the middle of the night with a sweat soaked front of my gown. This has happened a few times and I always have just blown it off. Now I am wondering what is going on. I have, besides Sjogrens, Raynauds (which has been acting up severely for the first times since I was diagnosed with it 3 years ago), IBS, and fibro. I am constantly being tested for RA which I will probably end up with in about another year (RA factor currently at 20 and needs to be at 30 before they will diagnose) and am always tested for Lupus since I had a positive ANA for it 4 years ago. I had severe EPstein Bar Virus and they warned me that I would end up with lots of autoimmune disorders. This Sjogrens is throwing me for a loop though!
I now have to have an angiogram on Friday because severe flash hypertension led my doctors to believe that I could have some kidney involvement going on. I had gone to the ER and they had done heart tests and they were fine so they said it had to be the kidneys. Went to the kidney doc and he said I should have scans of kidneys. Well they showed a blockage in my left renal artery, I had that along with white blood cells in my urine with no infection present and skin cells despite a clean catch, and I was spilling protein. They think kidney damage and not kidney disease since the BUN and other tests came back normal. So they are thinking the blockage could be fibromuscular dysplasia or it could be renal artery stenosis. Then I read that Sjogrens causes plaque to grow in your arteries faster than normal. Well, I definitely do not need that since my dad died of a massive heart attack when I was 25 and he was 49. He was 98, 99 and 100 percent blocked. Yeah, he did smoke, yeah he did drink lots of coffee, yeah he did eat lots of fried foods but come on....that blocked at 49???? So its hereditary and the Sjogrens makes it worse. Im pretty scared and not sure what to think at this point. Guess I will look for a Kindle book on Sjogrens or autoimmune diseases and how they all affect your body. Thanks for listening. If anyone can tell me some more about the flare I mentioned like if it was indeed a sjogrens flare or if they can just tell me more about sjogrens I would really appreciate it!!! Thanks again!!!
Anyway, back to this flare thing I have recently experienced. I woke up two nights ago at 2:00 am and felt absolutely horrible. My ears kept popping and I could tell there was liquid in them. My eyes hurt so bad I could not open them. When I did and looked in the mirror they were completely red and also red rimmed. My mouth was very dry but I felt like I was nauseous so I did not really drink or eat anything the whole next day. All I had the whole day was 2 small cups of tea and 2 ice pops. The thought of any other type of food made me feel sick. I also felt like something heavy had dropped on top of me and no one came to take it off. all of my joints and muscles ached. I had a horrible headache and could not move my head without feeling worse or dizzy. The two days leading up to this gave me some sort of warning by me waking up in the middle of the night with a sweat soaked front of my gown. This has happened a few times and I always have just blown it off. Now I am wondering what is going on. I have, besides Sjogrens, Raynauds (which has been acting up severely for the first times since I was diagnosed with it 3 years ago), IBS, and fibro. I am constantly being tested for RA which I will probably end up with in about another year (RA factor currently at 20 and needs to be at 30 before they will diagnose) and am always tested for Lupus since I had a positive ANA for it 4 years ago. I had severe EPstein Bar Virus and they warned me that I would end up with lots of autoimmune disorders. This Sjogrens is throwing me for a loop though!
I now have to have an angiogram on Friday because severe flash hypertension led my doctors to believe that I could have some kidney involvement going on. I had gone to the ER and they had done heart tests and they were fine so they said it had to be the kidneys. Went to the kidney doc and he said I should have scans of kidneys. Well they showed a blockage in my left renal artery, I had that along with white blood cells in my urine with no infection present and skin cells despite a clean catch, and I was spilling protein. They think kidney damage and not kidney disease since the BUN and other tests came back normal. So they are thinking the blockage could be fibromuscular dysplasia or it could be renal artery stenosis. Then I read that Sjogrens causes plaque to grow in your arteries faster than normal. Well, I definitely do not need that since my dad died of a massive heart attack when I was 25 and he was 49. He was 98, 99 and 100 percent blocked. Yeah, he did smoke, yeah he did drink lots of coffee, yeah he did eat lots of fried foods but come on....that blocked at 49???? So its hereditary and the Sjogrens makes it worse. Im pretty scared and not sure what to think at this point. Guess I will look for a Kindle book on Sjogrens or autoimmune diseases and how they all affect your body. Thanks for listening. If anyone can tell me some more about the flare I mentioned like if it was indeed a sjogrens flare or if they can just tell me more about sjogrens I would really appreciate it!!! Thanks again!!!
So much of your story sounds like me. All the same problems, Epstein Barr, father with heart disease and everything else. It is very scarey sometimes to think about all that can happen with our diseases, but I'm trying not to let myself think about the future and just do what I can today to try and get healthier.
Any doctor that just says to you, it's only dry eyes and dry mouth sounds like he doesn't know his head from his, well you know.
I hope you feel better and that your kidney damage isn't too advanced. Good luck.
Check your blood for vitamins and get the ones you need. Usually B and D.
Start taking care of you and exercise by all means!
Almost all doctors say these ridiculous things like minor , no big deal and dry eyes and mouth can be treated. Here's my reply , screw them. ENT's imo and many others here have the same outlook no big deal , who diagnosed you, yada yada yada.....
It IS A BIG DAMN DEAL for many of us. I'm so tired of saying it. I left a nice post on saliva here you'd have to dig through the archives to find it. It explains how bad losing saliva is ....its horrendous.
Evoxac if you are super dry might be of help too.
I've had the flares your having right now , had them for yrs. Now I don't get as many and the duration is far less. You must get at minimum try plaquenil and hopefully you can use it. Some of us here cannot it works wonders for me.
Find a competent Rheumy too.
Get on flouride rinses too. Use humidifiers......and I'm sure a lot more suggestion will follow my post. But, we need to know what steps you've already taken.
Sorry to hear your adventure.....we hear the same thing here over and over. So we get it.
I was first diagnosed with fibro, then with other autoimmune diseases. A very knowledgable dr said I have lupus, the rheumy said Sjogren's. I heard the same crap--Sjogren's is better because it's just dry eyes and mouth, and lupus causes more problems. Yeah, whatever! My parotid glands get huge and effects my ears. My glands are large now too. When the rheumy put me on plaquenil, she said it was to prevent lymphoma. So much for just dryness!
I think most of us have similar problems, except for the kidney involvement,so you are not alone.
I hope things go better for you.
Well to start I came home today in the early afternoon from my angiogram. Well it became a non-angiogram. Once he hot inside me he realized there was no blockage to my left renal artery going to my kidney and he also realized that my arteries in my legs look great also. So after like 30 minutes he pulled out and they bandaged me up. It took longer to get prepped! He did tell my mom I had the arteries of a 20 year old. I guess that is a compliment but its not exactly something I will go around telling people! He said I have to follow up ASAP with my nephrologist who I just saw on Tuesday and he made me an appointment for 3 months away. Of course that was when he thought I had a blokage that was being treated. I have asked what I need to see a nephrologist for since they have established that it was not kidney related and the nurse paramedic said it could still be kidney related.
After doing a lot of research I have come across something that I find very interesting. It could prove to be interesting for you guys as well. It seems that a lot of issues I have been experiencing, including the flash hypertension, the water retention in my abdomen as well as ankles and legs, feeling breathless when laying flat.....well they have all led me time and time again to a condition called "Pulmonary Hypertension". Whats interesting is that although we have not really had any documented cases in the USA there have have some in England and Japan. The most important thing I am finding out is that this flash hypertension I had could very well be autoimmune related. There are many, many routes that my autoimmune disorders could have taken inside my body to cause flash hypertension.
I find it amazing that you guys are talking about everying I am and have been going through!!!! For 6 years I have had horrible pain on my left ear. Deep inside of it. Now I know its the silly parotid gland next to it that is causing the pain. Plus my right one is so swollen I look like someone with double cheeks and not someone with double chins!! I know my uncle has it and I feel sorry for him because I look at him and I see those double cheeck things and they look so horrible. Then I remember that I have them also. It makes me want to cry. Plus you can squeeze them as hard as you can to ty and pop out the plug so the extra saliva will finally come out but even it you are successuful it will just drain a little and leave a flabbly piece of skin pocket that still has saliva in it. Plus they do hurt!! If I try to turn my head and rest it on my shoulders!!!! Forget it!!!! It is so sore I dont dare do that anymore. My eyes are now so dry that they stay almost completely red day in and day out. My best friend who moved away used to have these red eyes like that and I wondered what they were. Now I know she had an autoimmune disorder as well.
Yes, you are right Tom about the dry mouth it is terrible. My mom and I both suffer from it. It gets so bad that sometimes we both sound like idiots when we are out in public tring to talk with friends because our mouths stick.
Thank you again for being so thoughtful as to reading my long post and then taking the time time to answser me. You guys are the sweetest and the best!!! Love ya!!! Rooster
I'm not sure what meds you are taking, but I started Evoxac for the dryness and I only take it when my glands are swollen because I sweat too much from it. It really helps to get then working, at least for a little while.
Also, my opthomologist recently told me to use nighttime eye gel. It does help especially to not wake up with pain and dryness. It's a little yucky but it helps.
I'm sorry your family is not more supportive, especially when there's a possibility of kidney involvement. And coming here does not work people up, unless it's knowing there is support here. So keep coming!
If they don't have expeience you cannot expect them to know more than what they learned in medical school. ENT's fall into this category also.....
They simply don't understand the disease.
On the other hand they need to get educated if they are taking patients money. If they treat a patient with SjS and don't prescribe the right treatments because they haven't read up on it then they need a lesson.
I've given a couple doctors phamplets and written them where to go to learn about it instead of being ignorant. Both doctors thanked me for the information. My dentist had no clue either how bad it can get.
So don't blame the Ford mechanic if he cannot fix your Fiat. :-)
I know what you mean about the doctors. I have all kinds of weird little illnesses like Sjogrens, Raynauds, IBS, Sinusitis, Scoliosis, Chronic Venous INsufficiency, severe hypertension stage II that my nephrologist could not figure out what was causing it so he simply said I have stress related hypertension which may have been true a year ago but this time around? No way, my life has been stress free for the first time in a long time. I think that if I were a man they would not tell me that I have stress related hypertension, they would keep working till they found the reason behind it. Oh well, maybe in my next life! Take care!