I am new and do not know if I have SS.

[Gail]

Hello, everyone!
My name is Gail.I am new to this site. I just got sick with various symptoms and found this site. My story is not too long. I got sick in April. I got dizzy and could not breath at work. I was a hairdresser. My face would itch all the time at work, and my nose was itching and burning from inside from the smell of chemicals. I smoked too. I got sick and quit my job. I also quit smoking after 20 years, thinking that i will get better. I was wrong. I got to the ER right the second day I quit smoking with dizziness, burning sinuses, passing out, very low blood pressure. After ER I was in bed for 4 weeks before I went to the doctor. By the way, they did not find nothing at ER. My doctor told me that I was positive for Mono virus. She said it will take a while to get better. I was fatigued, dizzy, anxious, could not breath good, dry mouth, and burning face and sinuses. While I was at home, I had this strange burning pain in my face and head, it was very intense burning sensation.Like the whole face was ripped off me. Then my face and head went numb.Then I got the burning nose, and it started drying out and healing, and burning pain got better, but right now my sinuses are very dry from inside and I cannot breath trough the nose. My mouth is also very dry. I have trouble talking without drinking water or Gatorade. When I breath air in , I fell like I am suffocating. I also had MMR shot recently( vaccination for school), and I got worse. I cannot sleep at night I am so short of breath. My mouth got much dryer and I drink a lot of fluids constantly. My parotid glands are very swollen too. Just yesterday my eyes quit producing tears. I cannot cry anymore even if I want.I am very scared and alone.Is anybody related to my symptoms? I do not know what to do.

[Linda196]

Hi, Gail, welcome to Sjogren's World.

I think you will be surprised to see how many people here can identify with your symptoms, even though not everyone will have all the same things, or the same combinations.

I would like to mention that all of those symptoms could be caused by mono, and if so, will pass; but many people here have had mono before presenting with SjS symptoms, and if it's a trigger, you may indeed have SjS. What has your doctor said about all this, other than it will take a while to get better? It may be time to ask for further testing, or for a referral to a rheumatologist.

Take your time and explore the posts here. You'll learn a lot about coping with your symptoms, and more importantly, you'll realize that you aren't alone and other people understand what you are going through.

[Chickpea]

Hi Gail

I'm really glad you've found us.  With everything you've been going through you're bound to feel scared and alone with all this.   You'll find lots of people here who can relate to your symptoms, and to that scared feeling too.

As Linda says, it could be that your symptoms are due to mono rather than Sjogren's.  Or to allergies from the chemicals you worked with as a hairdresser.  Whatever the cause it's important to take your symptoms seriously, and find doctors who really listen to you.  Lots of people here have issues with their parotid glands so you'll find useful information on the message boards about how to help with the swelling.  And all sorts of tips for dry eyes and dry mouth.

Do you have friends and family who can take care of you?  People to encourage you to rest, bring you food to tempt your appetite, help organise meds etc?  You also need people around to remind you how good life is, even if it's just bringing some DVDs over so you can watch old films or sharing their favourite music.  Try to have a little treat each day so you wake every morning feeling more positive.

Thinking of you - Chickpea

[lynnmarie219]

Hi Gail and welcome to Sjogrens World!

I am glad that you found us but sorry that you feel so bad and had to even look online for help and support! As the others said...the symptoms that you're experiencing could very well be sjogrens or a variety of many other things....so its best to go to the doctor with all of your questions and concerns so that they can order tests and try to figure it all out.

In the meantime...as Chickpea said...no matter what is causing your dryness...you will find a lot of helpful hints here in old posts about how we deal with dry eyes/mouth/skin/etc and offer suggestions that have worked for each of us! You can type in the search box above exactly what you are looking for to help you get started!

[Bernice]

Gail,

Although I do realize that one day of sickness is too much, especially when you don't know what the case is, BUT in comparison to  what most go through to finally get a diagnosis April is really not that long ago and though SJS is an individual kind of illness, meaning it affects us all differently it's not unthinkable to imagine an onslaught of symptoms to take effect so soon, BUT I must say yours seem to have come on and progressed very, very fast. Meaning that to have lost ALL tears so quickly is quite progressive! I read in the Sjogren's handbook that there are two glands that produce tears one that produces tears to keep our eyes moist continually and one for emotions and/ or emergencies. Often the first one is most effected leaving the second one which does not necessarily produce enough to prevent dry eyes on continual basis. So to have lost ALL tears all at once is quite progressive!

I would really strongly suggest that you do continue to work with your doctor to find answers, if not this one then one that will at least be willing to test you. But I would also like to suggest to you NOT to panic into thinking the worst because as mentioned before a number of things far less destructive than SJS can case dryness, such as sinus problems and allergies.

Please continue to seek medical help, but don't panic and assume the worst!

Peace & Be Blessed!
Bernice