just diagnosed

Hello everyone. I'm new here and i'm new to sjogrens.. Scary but a relief knowing it wasn't all in my head. i've felt unwell for years but doctors never took me seriously. My eyes were getting really bad and my mouth was so dry. changed doctors and they finally had some tests done. My eye's came back as 0 moisture. pretty scary.! I feel like i am constantly unwell - i am always so tired, have no energy, sore throat, glands are swollen ..is this all part of sjogrens? I need to see another specialist who will hopefully give me answers and tell me what i can do to help my sjogrens. I haven't had any help I am tired of feeling unwell all the time because i am only 23 and i feel so old.

question - does sjogrens affect having kids? My partner and i want to try but nothing is happening I think i am a little overwhelmed and i am freaking out about everything.

are we at a high risk of getting lymphoma? this worries me..

sorry for all the questions i guess it's good to talk to people who understand me and don't think it's all in my head. I hope to meet you all soon!

3 Replies

oldestnewest
  • Some tips: wrap around sunglasses which create a moisture chamber around your eyes to prevent dryness and wind exposure. Apply preservative free eyedrops (such as theratears) morning and evening, even if they feel ok. As a quick kind of way to stimulate moisture, you can boil a cup of water, mix in half a teaspoon of cayenne and maybe some honey, and gargle-spit-gargle-spit...

    For the mouth, I use sugar free mints (eclipse mints) in combination with some other brands.

    .Biotene produces gel/gum and spray for the mouth too. For fatigue, an afternoon nap can help. Apply aloe vera gel into each nostril with a cotton tip morning, midday and evening to prevent dry nose. I would recommend learning a form of slow, gentle exercise, such as tai chi, chigong, or yoga. You could think of these as "active relaxation", which can help with the mental stress caused by worry also...

    Hang on to hope and positivity - there is good reason to, I have improved my condition a lot within the six years I've had it. All these tips may sound like a hassle, but after a while they just become part of the daily routine. Just take it slowly/considerately, do your research, and deal with what's before you.

    :)

  • You have just basically described what I went through. It felt horrific, but hang in there - it will get better. I find 'genteal Gel' works great for my eyes. I also use toothpaste without Sodium Lauryl Sulfate (helps with mouth dryness a little). I have also found Flaxseed Oil helps a little for general dryness as well. But most importantly - relax!! Since leaving my job & eliminating heaps of stress, I feel much better. I have also taken up tai chi - helps with the relaxation side of it. Make sure you read as much info on Sjogrens as you can get you hands on (and don't freak out about what you read) and make small changes over time. Take things slow & easy - and that applies to EVERYTHING! I was diagnose 16 months ago & with all these small steps, the last 5 months had been mostly great - I never thought I would feel this good again!! So hang in there, remain positive, and things will improve for you.

  • I don't think it affects having kids but I am not a doctor. I know if you have any operation you just have risk of extra dry and sore eyes after. See my post here sjogrenssyndrome.blogspot.c...

You may also like...