Just diagnosed with sjogrens syndrome

1. DanJan1979 27 July 2012 at 08:47AM
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   Hi, I'm 41 and have just been diagnosed with sjogrens. My main problem is the lack of understanding and empathy for this condition. My parotid glands are painful and my mouth is becoming increasingly dry.

   I'm keen to learn from others how they cope, and if there are any useful tips to follow.? I'm also suffering from chronic fatigue which used to being active, find difficult to cope with.

   D x

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2. gbeam 27 July 2012 at 20:56PM

   Hi i am 49 and have also just been diagnosed with sjogrens and i am starting my meds tommorrow, hydroxychloroquine 2 daily for 6 weeks, then one daily after that. i also have an eye test booked. i am having symptons of dry mouth and pain in my hands and feet. i have join the BSSA for £25 and have recieved info from them. i can;t give you any advice because i am only just starting out on this journey like yourself. are you taking any medication yet? for your fatigue i would suggest you try some small amounts of exercise, i know it is probs the last thing you will be thinking of at this moment but it does help check out this link

   http://www.fatiguetreatment.co.uk/ExerciseandFatigue/tabid/2151/Default.html

   let me know how you get on

   G

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3. DanJan1979 30 July 2012 at 10:07AM

   Hi G,

   Thanks for the feedback.

   Im not on any medication yet only atrificial saliva supplements. I had the eye test with paper strips and my eyes seem to be fine although a bit gritty.

   Im being monitiored at the maxillo facial unit as that was my original source of referral however I have booked to see my GP this week. I had a brief knowledge as i work in the dental industry and had came across this syndrome before. I never realised how many symptoms could derive from one syndrome. (its almost like MS- with varying patient symptoms and progression) .

   The fatigue link is really useful , thanks. I think you have a great point as ive become very lazy , however i need to get back out walking again.

   Let me know how your medication suits.

   All the best

   D x

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