I do sleep, but it's broken, erratic, and not at normal, predictable times!
We've tried so many things, but most of those things just add to a hangover feeling of fatigue that lingers into the day.
So, how well do you sleep?
Hi Kaz,
I think we could all stand to win the lottery! Seems if we get two nickels to rub together, they go for medical bills or meds!
Yes, every time I awake, I need to use the bathroom, sip or even gulp water, use water and eye drops, nasal spray, and sometimes have to exercise before I can stand up straight and walk to the bathroom! By the time you go through all of this jazz, you're awake!
Well, I don't even look good lately! Thinking of taking down the mirrors! ha!
Isn't it amazing?
Well, the sun's coming up, so maybe this vampire can get a few more winks!
Sleep well, my friend!
Oh sleep...good restful sleep...now that would be a blessing. The only way I even get to sleep is my nightly dose of Trazodone...which fortunately does not give me that "hangover" feeling in the morning. Then it is a battle mid-day when the body just wants to take a nap. I lost my job a month ago (downsized) and can say that the biggest positive is I no longer have to fight to avoid napping...I sleep whenever my body says it can. I haven't figured out how to put that requirement on job applications!
You just put your finger right on it. Even when I do manage to sleep a few hours straight, I wake up exhausted. I too, have the issue of waking for eye drops, water, trips to the bathroom or just to slowly turn over because I am so achy. I have no idea what it's like to wake up feeling well rested, its been so many years.
Funny, the doc recently asked me how I sleep…I told him "I don't". LOL
Yet another reason this is one of those "But you look fine" diseases.
I've had insomnia for years. Began taking Ambien about ten years ago. I cut a 10mg pill into thirds. Just about 3mg a night helps. Doctors and Pharmacists have told me there is no way 3mg could even make me sleepy. Perhaps it's a placebo effect. Who cares. It works for me. I have a full time job and I can't be awake all night. I don't always stay asleep. Do wake to take a sip of water.
I know how you all feel. Between the lack of a really good nights sleep, dry eyes and mouth, osteoarthritis that is kicking my butt, and hair loss....................let's just say. It takes me longer and longer to get my face on in the morning. Then I put on a wig (if my co-workers ever saw me without my hair) Holy Cow! They all tell me how great I look for 68. They should only see me at 6am.
We all have to find whatever it is that gets us through. I believe we all have our own private "Hell". It feels good to share with other women who know where of you speak. I've shared things here I wouldn't have told anyone else. Cause they just don't get it. Thank you again ladies, and God Bless!
Connie said:
I've had insomnia for years. Began taking Ambien about ten years ago. I cut a 10mg pill into thirds. Just about 3mg a night helps. Doctors and Pharmacists have told me there is no way 3mg could even make me sleepy. Perhaps it's a placebo effect. Who cares. It works for me. I have a full time job and I can't be awake all night. I don't always stay asleep. Do wake to take a sip of water.
I know how you all feel. Between the lack of a really good nights sleep, dry eyes and mouth, osteoarthritis that is kicking my butt, and hair loss....................let's just say. It takes me longer and longer to get my face on in the morning. Then I put on a wig (if my co-workers ever saw me without my hair) Holy Cow! They all tell me how great I look for 68. They should only see me at 6am.
We all have to find whatever it is that gets us through. I believe we all have our own private "Hell". It feels good to share with other women who know where of you speak. I've shared things here I wouldn't have told anyone else. Cause they just don't get it. Thank you again ladies, and God Bless!
I can surely join THIS club!! Oh my!! The sleep "issues" are the "worst"!!! I seem to have a pattern of sleeping a couple of hours when I first go to bed, then have to use the bathroom and it is "the luck of the draw" is I can return to sleep or not. Sure makes you feel lousy the next day---as if Sjogren's isn't ENOUGH!!! I do use the little chewable pill "midnight", over the counter from any pharmacy or Walmart, but I have to say it doesn't do a lot for me consistently. SOMETIMES, it seems to help a little, but I refuse to go to the harder stuff at this point. So , anyway, if you haven't tried this remedy, it is at least worth a try and very inexpensive.
Happy resting!!!
Patti
I haven't slept well my whole life. Even as a child, I would wake up multiple times. I've tried EVERYTHING out there for sleep. I am also very med resistant. Which makes taking meds hard. My psychiatrist, (bless her!) has been working on getting me on the correct meds that combat my ever growing depression. She suggested I take Seroquel. I was reluctant, but I gave it a try. After the first six weeks of some left over drowsiness in the morning, I was finally sleeping more! I can't say that I'm sleeping through the night, but I am sleeping. It is such a wonderful feeling.... Yet I do not wake up feeling refreshed. I can remember only two times in the past twenty years that I've felt refreshed waking up. But I do wake up, and feel that I did get some sleep.
My hubby says that I drink a lot in my sleep, and even use the bathroom in my sleep. This isn't because of the Seroquel. I've done that my whole life. Seroquel has been a blessing for me. I wish I did sleep through the night and wake up refreshed. But I think that's really not going to happen any time soon. But I will always be thankful the Seroquel.
Connie: My heart breaks for you for your hair loss. I used to have long blonde hair (down to my waist) that I loved! That was about four years ago. Now my hair is so thin, I can barely put it up in a pony tail. I can't afford a nice wig, so I'm praying we get the SS under control, and maybe my hair will grow back. I'm only 46, and to have my hair falling out is really devastating to me. My Rheumy said hair loss wasn't from SS, but I don't think he really knows. He said it was possibly from Lupus, but on paper I don't have Lupus. There is no other reason for my hair loss, so I'm at a loss myself. *Hugs Connie*
It's 6:45 a.m. and the start of my day. I hope everyone has a wonderful day!!
Stacie
I have really been trying to work on getting more sleep, but I have not seen any improvement in my fatigue, and even when I go to bed early, I am still yawning by 9am. It feels like I am never fully asleep, more like half asleep and half awake all night.
Stacie, don't despair.........
Guess what! You don't have to buy an expensive wig. Google "Vogue Wigs". I buy synthetic wigs. Around $99 each. They look great, easy to care for, and I receive so many compliments on "my hair". When you look better, you feel more confident.
I know just how you feel. I'm a Leo. My hair was sooo important to me. Then it was taken away. I think I can deal with the dry everything, but losing my hair has been the most devastating. So, a little fake hair, some Biotine, eye drops and moisturizing make up and I'm good to face yet another day.
Good thoughts sent your way!
Sleep....is that what my husband does 5 minutes after his head hits the pillow?? For me it's been years and years of trying to accomplish that task without success. I've been seeing a sleep neurologist for about 8 years now. My PCP had given me Ambien, however I was one of those who ate, talked and did many other bizarre things while using Ambien! After that medication disaster he recommended the sleep specialist. Had a sleep study and was diagnosed with "sleep interrupted insomnia", restless leg syndrome and periodic limb movement disorder. Currently I am on Requip and clonazepam at bedtime. Never have the hang over feeling in the morning, but I don't always stay asleep. The neurologist tells me waking up at night is ok if you can fall back asleep, it's when you wake up and stay awake that it's a problem. I think a sleep study is extremely important for those with constant insomnia, finding out the cause and then treating it may be your solution , it's nice to get the zzzz's!
Hi babs,
I never had a problem sleeping before all of this hit me, did you?
Yes, it's getting back to sleep, and sleeping normal hours!
Pain is my big factor with this, back pain, hip pain being the worst. I think if I could hang like a bat to sleep, I may be okay. I can no longer lay on my sides more than a moment or two, my SI joints and lumbar are pretty bad, though the cervical spine is not great either, and I never could sleep on my stomach, except on the expensive versions of the Chriopractor table. May have to resort to that one day!
I am so happy that my grandson helped me to finally sign on again since I had completely forgotten my password & kept messing up signing in again.
Everything I have read in the discussions I can say, "uh huh, that's me too! The sleep problems we all have are exactly the same. I am so good at the eye drops, sipping water, nose sprays, getting up to go to the bathroom, brush teeth or rinse mouth, gargle, pop a Medactive in my mouth that I can do it all in total darkness!!! Oh, & take my necessary pills at certain hours---synthroid-at least 2 hours before breakfast, prevacid-1 hour after synthroid. One allergy drop in my left eye, regular drop in right eye, then later Restasis, & the use of coconut oil on my shriveled lips. On & on, it never stops & people say they understand, but how could they? We look so good,as Kaz has said. Ddi you ever think to yourself that they might think we are all faking?
In 1999 I was diagnosed with papillary thyroid cancer so thyroid was removed even though it was just in the one lobe. Over the years it spread to lymph nodes in my neck, my lungs, my left thigh, right behind the knee. So at different times needed to swallow radioactive iodine, have more surgery, radiation treatments,more surgery & oodles of PET or CT scans.
Talk about dry! I can't believe I can still swallow. And my sweet family doctor still writes in the smallest letters at the bottom of my sheet to have blood work done--metastatic papillary thyroid cancer. Guess he thinks that I don't know what has been going on these last 15 years.HA!
Sorry this is so long, but needed to get it out. Still being told, "you look so good!" Even though I can barely talk above a loud whisper anymore. My grandchildren insisted I have an iPhone which helps so much b/c at least I can type my messages to people when in a group setting. Sorry again.
Good night dear Sjogren's Syndrome friends. Thanks for reading. All of you will be in my prayers from here on in,
PS~~SK, you are leading discussions that are right on target!
Hi starbright,
I'm so glad you had help getting back on site! I also rely on my grand kids to help me out with computer and iphone problems! I sometimes think the 4 year old has better computer skills than I! ha!
Yes, I do feel that others think we are 'faking it', but I think this is a problem that belongs to them rather than us, even though it cuts us to the quick! I see this on every group that I've ever joined here at Ben's Friends. As bad as we feel from being chronically ill, I think this is the most painful aspect of chronic illness.
Glad to have you back, thanks for the compliment, but please always feel at home to post a discussion of your own, this group belongs to ALL of us! Any discussion posted, every discussion that you respond to, is so important to keep things going, to grow this community and to raise awareness!
Thanks to all for helping to get this group going again, we all NEED to have it!
Don't worry about the length of this, I tend to end up with what I call the 'War and Peace' length postings! ha! Guess we're just 'gushes' by nature!
So glad to hear from you, don't be a stranger!
Wishing you well,
SK
Hey mc,
You know, I may be totally off the mark, but I tend to think that part of our inability to get proper sleep has a direct connection to the immune system being in hyper over drive. It's what I call 'hyper exhaustion'!
Wishing you a good night's sleep,
SK
SK you could very well be right. Another thing that happens to me is that my body is totally exhausted, so I give in and go to bed. Then my mind starts running rampant, feeling guilty, thinking about all that I didn't get done, worrying did I remember to (fill in the blank), I think of all that will need to be done tomorrow, and I start worrying that I won't get it all done. So then I start prioritizing lists in my head, and, and, and..........you get the drift.
SK said:
Hey mc,
You know, I may be totally off the mark, but I tend to think that part of our inability to get proper sleep has a direct connection to the immune system being in hyper over drive. It's what I call 'hyper exhaustion'!
Wishing you a good night's sleep,
SK
I hesitate to chime in here because it's my wife, not myself, who suffers SS. Sometimes she suffers quite horribly. She has always been a night owl, but now it's really bad. Sometimes she goes days without any real sleep. If she's lucky she can nap in small increments during the day. She tried half tablets of Zolpidem but had to quit, although they helped, because they resulted in really scary hallucinations. Now she uses quarter or half tablets of Adepsique which is really an anti-anxiety drug, and they sometimes help.
Something all sufferers should consider is having an MRI taken of the spinal column. My wife was suffering from increasing neck pain and finally went to one of the top neurosurgeons in the country. After the MRI they found stenosis and bone spurs in the area of her neck and they were closing in on the spinal cord. She had surgery to replace three vertebrae with titanium cages and things are much better.