fatigue is unpredicatable

Thank you - I will get a multivitamin. I had a dog and that used to get me out which I should do more often. But I still walk once a week with a friend and her dog. Your post has helped.

Thank you. I do feel that the doctor doesn't look at the sleep issue as much as I'd like. GAD is "general anxiety disorder". As opposed to depression. I have a review with the doctor tomorrow. And am waiting for cognitive behavioural therapy appointment. I am a person that tries hard to be pro-active with handling the downside of SS. The fact that it's such an invisible ailment as far as the outside world is concerned, makes it hard. And when you try telling someone you have it, they haven't a clue. And that applies to many in the medical profession. I seem to be having a flare up. I know that people do have them. It's not happened to me before. Just odd days, not one day after another like at present.

i totally understand you but I have good news. There are doing a lot of researches in Baltimore John Hopkings Hospital where I have an appoinment the 27 of December after 10 years suffering in silence, finally my doctors here in Virginia do not know what else to do with me to help me and they decided to send my to Sjogreen Syndrome clinic in Baltimore where they are doing research to find not just a med to help but a treatment to cure SS. I am exited and i will share with you all everything I will learn from this visit.

It seems to me that GAD would be exacerbated by poor sleep. I don't have GAD but I have been clinically sleep deprived several times, with the 1st time being the worst. Suddenly I had a huge anxiety issue; eventually I thought I had gone insane. This happened right about the time I was diagnosed with SS at 39 though I 've no idea if there was a connection. I've been on sleeping pills ever since, 20+ years. The other episodes were when i tried to go off sleeping pills (while my doctor kept asking why I would do such a thing). You may not need sleeping pills - many folks just need a new bed when they start sleeping poorly - but you may want to keep a sleep log.

Thanks for the update. We bought a new and: it helps with the joint pain. I think I must ask outright for sleeping pills. So far they've not been prescribed.

Can you please let me know what you learn in Baltimore in the Sjorgens clinic?

Anything new we can use?

Don't take anything the wrong way as that would be unkind to people like you taking time to discuss this. I had severe eye problems over many years. Consultants never mentioned SS. That in itself annoys me hugely. I was diagnosed six years ago by the rheumatologist's at the hospital, by blood tests. I asked to be referred to a consultant I found who understands SS. She confirmed it. I'd be interested in knowing more about your daughter's medication. Thank you.

Check out sleep apnoea, as what you say mirrors one symptom. And you likely do have SS. My eyes get tired, but as soon as I put in eye drops, they're much improved.

Hi Shaq

It is not required of you that you have every listed symptom of a diagnosed disease, so being free of fatigue could just be a great blessing. Meanwhile you're getting that pesky neuropathy from which so many of us suffer.

You also may need sleeping apnea tests. You've got a sudden adult onset of a problem many if my father's offspring carry from birth with those sudden sleep instants while driving. If I were you I'd get me to a neurologist promptly. They probably wouldn't start with sleep tests but if all other tests reveal nothing you may need to insist on this test. A friend had 8 wrecks (all in low speed city driving) and was tested for every brain & vision issue beginning with the 3d wreck. No problems found. After the 8th wreck someone suggested sleep apnea. Bingo! She continued driving safely until she was 87 & kids took her keys & distributor cap.

As for myself I've been very thankful that those instant sleep episodes disappeared in about my 40s. My brothers and I travelled extensively with our dad when we were kids. He kept tangerines and sunflower seeds in the car to help him stay awake but still pulled over to the side of the road millions of times for him to have a brief nap. I've done the same when I was younger, sans the kids. Almost got myself in huge trouble one time, having accidentally pulled off to nap in the middle of a sizeable international illegal drug deal. Fortunately a local came and got me out of that area.

Tell your doc it's like blackouts but without the booze.

thanks Estelle and Aitarg..i had never even considered sleep apnea. I thought sleep apnea was a problem with snoring and fogetting to breath

?I will definitely get that checked out as I now live in fear when driving home from work on a fast moving highway.

?I do fall asleep sitting on the sofa and not realise I am asleep until my husband asks me and i wake up and sometimes this goes on whole evening from 6 pm to 9.30 pm where he wakes up and next thing i know is he is waking me up again ..i just put that down to bad sleep at nights and 'catching up' (and a lazy job) and getting old.(64 yrs old)

?i am not sure if in this part of the world the Drs wouldnt  say the same...old..bad nights and so catching up. 

Wouldnt sleep apnea make me sleep well at nights?

In answer to your question: sleep apnea prevents proper restorative sleep. One may seem to sleep through the night but at the very least with apnea one doesn't get all the proper sleep stages in correct proportions. Over time this is destructive to other systems such as the heart and brain. If I took your symptoms and applied them to my neuro's questionnaire, I'd be sent to a sleep lab instantly. So be sure to mention everything to your doctor that you mentioned here. I too would be very worried to be driving on freeways here in the States with your symptoms. I was so glad when I outgrew my diluted version of my father's mild narcolepsy. I know every trick for staying awake while driving - and none of them work all the time!

Many but not all folks with apnea snore, but apnea treatment isn't the same as curing a snore. I suppose one might say apnea is "forgetting to breathe" but that IMHO makes it sound like a small problem and apnea can have massive effects. It was a miracle that my friend made it through 8 wrecks without killing or seriously injuring anyone. You are right to be concerned about all your highway driving. I'm gonna hold a good thought for you & all the drivers around you.

If you haven't been to a sleep lab,they're not much fun. If you can arrange for a day off following your night in the lab, do so because you may find yourself walking out desperately tired & sleepy.

Likewise, not all apnea machines are the same, nor are all the masks. Get what works for you.

Here in the UK my husband went to a sleep clinic: they just asked him to wear a monitor overnight for two nights. Still awaiting results. However, his excessive sleeping could be from hypothyroidism as at the moment we've found his thyroid levels are very much out and that may have been what the problem was. He's fallen asleep at all the wrong times throughout 51years of marriage. Have you had thyroid checked? I think it's a common problem with SS but don't quote me on that point. All the best.

I have had sooo many blood tests in last 18.months i have lost count and i think thyroid was 1 of those. I also have GERD and Barretts so i am on the slim side so perhaps dont have hypothyroid.