Posted , 7 users are following.
Whilst I can accept that towards the end of a day, sometimes I really am fatigued. But lately I am not sleeping that well, and don't even feel like getting going in the morning. I only do so out of a sense of guilt about it. I try not to'give in' to the feeling of really not wanting to have to think about what needs doing; I've always been a very busy person, but now feel the exact opposite! Is this SS or GAD, or both?
1 like, 19 replies
carmen12016 estelle44124
Posted
brenda25965 estelle44124
Posted
Hi Estella, I know exactly where your coming from SS doesn't only effect you physically, and the fatigue can be crippling , it also effects your mood. Where I try not to give into it all the time sometime you have got to give yourself a break, rest when ever possible ,if I feel really bad I stay in bed or snuggle up on the sofa but when I can I find a good walk can do wonders, it loosens your joints it energises you and really does lift your mood, there are some good supplements available that do help with the fatigue and make sure you take a good Multivitimin, hope you feel better soon.
estelle44124 brenda25965
Posted
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.
aitarg35939 estelle44124
Posted
Hi Estelle
I have no clue what GAD is as a medical condition, and none of us are doctors so as you've noticed we're not guessing about the diagnosis. Everybody's right about a common chronic fatigue factor with SS. But please pay attention to what you said about not sleeping well. Loss of good quality sleep is a cumulative thing, a very bad cumulative thing. For us women there are many cause for both insomnia and poor sleep. The upshot of them is that over time every system in your body suffers from lack of good quality sleep, and eventually one's brain and decision-making suffer terribly. So if that continues I hope you'll get it checked out. Better sleep may or may not improve the fatigue and mood but it won't make them worse.
Aitarg
estelle44124 aitarg35939
Posted
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.
carmen12016 estelle44124
Posted
aitarg35939 estelle44124
Posted
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.
estelle44124 aitarg35939
Posted
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.
katalin59838 carmen12016
Posted
Anything new we can use?
ihavenonickname estelle44124
Posted
My suggestion is to discuss these issues with your physician, take the various blood tests, and wait for the results
frustrated61 estelle44124
Posted
Hi Estelle ~
Don't take this the wrong way, please, but did your eye specialist diagnos you having Sjogrens? Just curious is all. I have it and it is one of the symptoms of it. I also have sarcoidosis so I'm double whammy'd with fatigue. Thank God I have the means to sleep, or just lie down when needed...lately it's more and more.
My daughter was just recently diagnosed with MS and a side effect to that is fatigue. I think with most auto-immune diseases, fatigue is a given. I mean I've read other auto-immune posts and they seem to mention fatigue as the number one factor. I will get the name of this drug my daughter takes; she said it really helps to lessen being tired all the time. She has 5 kids, works full-time, and on and on. So, if she can deal with her fatigue better with this drug, I'm in. I'll get back with you when I find out the name.
I wish you well, Estelle and hope you get some relief from your fatigue.
Thankful,
Frustrated
estelle44124 frustrated61
Posted
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.
shaq26875 estelle44124
Posted
I dont really sleep well and never for more than 6 hrs a night....but having said that i fall aslleep on the sofa by 7pm after dinner watching telly.or if i go out shopping i get very tired and fall asllep on the sofa.
i am wondering if ido have SS (have occassional flareups of painfull joints and neuropathy in feet and toes).
A recent experience scared me to death...I think i fell asleep while driving ..for a split second...i became conscious of the car about to hit the metal railings on the hard shoulder and few mins later became conscioius about drifitng into another car broadside...I was struggling and didnt know my eyes had actually shut..that had never happened to me before..no matter how tired i had been..driving normally wakes me up...i am an expat aborad and have to drive to get to work (3/4 lane highways) I still wonder if i have been misdiagnosed with SS..
estelle44124 shaq26875
Posted
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.
aitarg35939 shaq26875
Posted
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.
shaq26875 aitarg35939
Posted
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?
aitarg35939 shaq26875
Posted
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.
estelle44124 shaq26875
Posted
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.
shaq26875 estelle44124
Posted
Join this discussion or start a new one?
New discussion Reply