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Sjogrens Topics => Living With Sjogren's => Topic started by: araminta on June 30, 2019, 05:56:54 AM

Title: Getting a good night's sleep
Post by: araminta on June 30, 2019, 05:56:54 AM
Any tips about this would be appreciated.

I don't have sleep apnoea, and I can cope with the mouth dryness with Xylimelts.   I'm not on any prescription medication.

Some nights I sleep OK, others I am awake for hours.   I know all about not looking at computers etcs for a couple of hours before going to bed, the room is quiet, I know a few tricks like progressive muscle relaxation - which does sometimes work well. 

But there are a lot of other nights when nothing helps, I'm tired but just not sleepy.   It can go on for several days continuously.   This started when all the other symptoms got going so I'm sure it's linked to Sjogrens.
Title: Re: Getting a good night's sleep
Post by: araminta on June 30, 2019, 05:58:13 AM
I should add that sometimes pains can keep me awake, but more often that is not the problem.
Title: Re: Getting a good night's sleep
Post by: irish on June 30, 2019, 10:28:39 AM
I just settle in my recliner with my comforter and a good book and something to drink and eat. I don't go to sleep right away but generally I dose off with book on my stomach and glasses on. I also turn the TV to the weather channel as it is semi boring and I turn the sound to low. I don't worry about being awake. I have been like this for years with the sleeping issues. I learned long before I was diagnosed that my restless nights would be followed by some type of health issue. After I was diagnosed I then put the puzzle together. I figure it was my antibodies increasing and trying to kill me off again.

When my autoimmune got much worse and I was also not diagnosed I plus I was dealing was miserable issues. I was sleeping 2-4 hours a night and still working. It was 2000 and by 2003 I had to quit work and 3 months later got diagnosed with the Sjogrens. Insomnia and sleep issues go along with the autoimmune diseases. We just need to sleep when we can and develop sleep habits that make sense for us. Take care and good luck. Irish
Title: Re: Getting a good night's sleep
Post by: Joe S. on July 01, 2019, 04:39:56 AM
I lay back in my recliner and Meditate. The meditation helps me to manage the pain and 15minutes is like an hour of sleep.
Title: Re: Getting a good night's sleep
Post by: Liz D. on July 01, 2019, 05:07:10 AM
I went for years like that and it is so frustrating!  There are still nights I can’t sleep but for the most part, I’ve been sleeping better.  I believe a lot of it has to do with getting a new mattress and an adjustable base for it.  The adjustable base allows me to raise my head up a bit as well as my legs.  It helps to get in a comfortable position.

Another thing I must do to sleep is have an eye mask on.  I need it to be totally dark.  I just bought an excellent mask on Amazon called IMAK sleep mask.  It has beads in it and contours comfortably to my face. 

I’ve also heard that a weighted blanket can help.  It’s the new craze for helping insomnia.  If you google it, you may find some information about it.  I’m considering getting one, but they are a bit expensive.

I hope you can get some help to sleep better. 

Liz D.
Title: Re: Getting a good night's sleep
Post by: araminta on July 01, 2019, 08:17:40 AM
Many thanks for all your replies.

Irish:  I can't imagine how you coped as a nurse with only a couple of hours sleep, you must have felt terrible.   I am "lucky" these symptoms started after I retired.

Joe:  I do meditation every day in the morning, maybe I should try doing it before I go to bed.

Liz:   I'm glad you're sleeping better now.   My room is very dark, I bought a blackout blind for it.   I hadn't heard of weighted blankets - don't they feel rather hot?   We're having warm weather at the moment in the UK and I just sleep with a sheet over me.
Title: Re: Getting a good night's sleep
Post by: Deb 27 on July 01, 2019, 04:16:38 PM
Have you tried melatonin? It works pretty well for me. I started having similar problems that you describe when I retired. I take 3 mg. Also, I find I sleep better if I take a bath with Epsom salts. My knee is hurt so I can't get in the tub right now. And, taking a magnesium supplement helps but I have to be careful with how much b/c it can give you diarrhea. It has to be a low dose like 100 mg.
Title: Re: Getting a good night's sleep
Post by: Sharon on July 01, 2019, 05:19:27 PM
I have tried every possible tactic, including hypnosis, and the only thing that helps me is taking a sleeping pill.
I have given in to this after eventually concluding that nothing is more important to my health and quality of life than sleep (and a lot of it!).
Title: Re: Getting a good night's sleep
Post by: irish on July 01, 2019, 09:15:52 PM
Araminra, Yes, I did feel terrible. I also went through about 3 years or so when I would wake up every morning at 4AM or with nausea that was pretty debilitating at the time. I finally learned to get up and and get 7 up with ice and gingersnaps. Ate a few of those and sipped on the pop. I never went back to sleep but was able to get up and go to work. I had the nausea back in the 80s also and wasn't diagnosed with anything. They checked gallbladder and they also wondered if it was my appendix but never had surgery at that time.

The good thing with the nausea the last time and the insomnia was that I worked as RN in assisted living and could set my hours. I got there between  10 am and 12 N and would leave around 8 - 12 MN. And yes, I thought I would die some days. The staff asked me many times when I was going to quit as they knew I was sick. I told them I would quit when some doctor validated that there was something wrong with me. Ain't the life of autoimmune fun. Take care. Irish
Title: Re: Getting a good night's sleep
Post by: araminta on July 02, 2019, 03:58:14 AM
Thank you again for the replies.   Deb, I will look into your ideas, maybe try them one at a time to see what the effect is.

Sharon:   yes, I'm afraid I sometimes take an over the counter sleeping pill too, I hate doing it, but sometimes get desperate.   My mother got addicted to sleeping tablets so I'm very wary of them.

Irish:  you must have incredible strength of mind to get through such tough times.   I hope in the future that doctors will find quicker ways to pick up on these autoimmune conditions, they can put a terrible burden on people.
Title: Re: Getting a good night's sleep
Post by: Kathy57 on July 02, 2019, 09:44:16 PM

I too developed terrible insomnia when I started getting sick.  I couldn?t figure out what was happening to me because never in my life did I ever have trouble sleeping.  Now I look back and realize that I was sick with Sjogrens, and I honestly think it is somehow caused by this illness.

I went days without sleeping a wink and became exhausted and incredibly anxious.  I tried sleep hygiene, Melatonin, and Benadryl.  Finally, i flat out begged my doctor for a sleeping pill.   I was working nights at the time and thought my sleep issues might be due to that.  Well they are not.  It doesn?t matter if I work or not.  I can?t sleep without my sleeping pill.

The doctors don?t like to prescribe them but I am on Ambien and have been for at least six years.  He took me off of it and put me on Lunesta, but it didn?t work any better than Ambien and gave me a bad metallic taste in my mouth.  Also, What I paid for Lunesta for one month was what I paid for my Ambien for a full year!

I never had a problem with the Ambien but it was my doctor who insisted I couldn?t be on it long term.  Finally, I fired that doctor and went to another.  I talked to my Rheumatologist and he has been giving me my Ambien for the last five years.  I?ve never had a problem with it and I sleep so much better with it.  I do try and take the lowest dosage that I can.  The doctor says I can take one or one half pill as needed.  Some days that are really bad for me I take an entire pill.

I know when and when not to.  I have tried to sleep without but I find that I am so dry and uncomfortable that I just can?t sleep.  My mind wanders and I hurt all night and feel like I?ve been hit by a truck in the morning.  As far as I?m concerned, my Ambien is one of my most important meds.  I NEED it to function.  Sleep is so important .

My Rheumatologist has many patients and many who are much sicker than I am.  He listens to his patients and gives them what they need.  My big fear is that he will retire and no one can replace him.  I remember taking my first Ambien and getting a nights sleep that I had not had for months.  I felt like a different person when I woke up, and all my symptoms improved dramatically with sleep.

I no longer worry that I take it.  It?s just another med in my arsenal. 

I?ve heard some horror stories about Ambien and that other people have had issues.  I believe them, but I can honestly tell you that I have never had side effects from it except for vastly superior sleep quality.

Title: Re: Getting a good night's sleep
Post by: araminta on July 03, 2019, 03:01:08 AM
Thank you for sharing your experience with sleeping pills, Kathy.   It's always good to get different points of view.

I'm very glad you are getting the help you need.   I agree we can feel transformed after a good night's sleep.

This would obviously be an option for me, I will look at other possible remedies first, but I was interested in what you said.
Title: Re: Getting a good night's sleep
Post by: Sharon on July 03, 2019, 06:23:53 AM
Completey agree with you Kathy- that has been my experience as well.
Sometimes we have to choose the lesser of the evils.
Sleep is therapeutic.
Title: Re: Getting a good night's sleep
Post by: Kathy57 on July 05, 2019, 09:25:40 AM

I wanted to add something here today because I would not want to give bad or harmful advice.  There are many people who have had very bad experiences with Ambien and it is not recommended for long term use.

If I were not sick, I would stay away from it.  I am not advocating sleeping pills for you, but just telling you what has worked for me, personally. 

My sleep aid has to be taken right before I go to sleep and you need to have 7 or 8 hours of sleep ahead of you or you should not take it.  Some people have had very serious issues with sleepwalking, eating, drinking, and even driving while asleep.  These issues concern me very much.  To my knowledge none of this has ever happened to me.  My husband concurs.

This does not mean that I will not have a bad experience in the future.  I am aware of the very serious risks and for me, right now, I have accepted them.  This does not mean you should or you should have to.  This is just my experience.

My Dr. keeps a very close eye on me and I can contact him anytime if I am having issues.  One size does not fit all. 

I wish you the best of luck with finding what works for you. 

Title: Re: Getting a good night's sleep
Post by: araminta on July 05, 2019, 09:43:04 AM
Kathy, it was sweet of you to add these warnings!

Don't worry, I would always research a medication carefully before deciding to take it.   I understand that forum members are simply giving their own personal experience, and that this might not be the same for everybody.

I hope the sleeping tablets continue to work well for you without any problems. :)
Title: Re: Getting a good night's sleep
Post by: irish on July 05, 2019, 11:22:01 PM
I think I posted on a thread about Ambien previously. I was driving a long way and listening to a program put on by doctors about Ambien. They told about how so many people are taking it. Our lives are so busy with both parents working, meals to cook, homework and school activities with the kids, cleaning house, washing clothes, etc. Then at the end of the day parents get on the computer or smart phone and piddle away the time and don't get to sleep until well after midnight.

They take their ambient so they sleep good and get up early to drive to work. Strong coffee is a must n the morning. It turns out that the statistics show that there are many morning accidents during the morning traffic and the people who study this have found that many of the accidents are caused because people are hung over from their sleeping pill. Like mentioned earlier, they do not have enough sleep hours to get the drug out of their system before they get up and go to work.

I don't know what the problem is or the cure for it but I would bet a lot of people would say that we should limit our electronic use. Also, I wonder if a person would take half a dose of their sleeping pill...would they sleep and awaken in a more alert condition.  It sure if for for thought. Good luck all. Irish
Title: Re: Getting a good night's sleep
Post by: araminta on November 20, 2019, 06:53:34 AM
Just an update on this.   I have been taking a magnesium supplement for over 2 months now, as suggested by Deb27, and it seems to be having a beneficial effect.   It's not like a knock-out pill  :), but I seem to settle down to sleep significantly faster than I did before.   I have not taken an OTC sleeping pill in that time.

I still wake up occasionally in the night, but usually manage to get back to sleep.

I take it as magnesium glycinate, 200g a day, because that was supposed to be the least likely form of magnesium to cause diarrhoea.

I am pleased and hopeful this effect will last, so many thanks to Deb27 for the suggestion.

Title: Re: Getting a good night's sleep
Post by: irish on November 20, 2019, 01:07:24 PM
Have you informed your doctor that you are taking the magnesium?? I does help sleep and also constipatioin but it can also cause muscle weakness in our arms and legs and also a muscle weakness that can affect our heart and cause problems. Your doctor may want to do a magnesium level.

Just wanted you to know about these side effects. Good luck. Irish
Title: Re: Getting a good night's sleep
Post by: araminta on November 21, 2019, 06:12:27 AM
Irish, thank you very much for that warning.

I think I am well within the recommended daily limits for magnesium, especially as I am vegan.   I've had no problems with muscle weakness in arms or legs.   However I will mention this to my doctor next time I see him.  :)

Title: Re: Getting a good night's sleep
Post by: brizzo on November 23, 2019, 07:26:54 AM
I'm going to add my two cents in here...

For years, actually decades, my P/C Doc had me on benzo's for "anxiety". That and Ambien to sleep. The supposed "anxiety" was causing IBS... a gift from my Father's Mother to all his children... WHOOPEEE!!!! Thanks MomMom!!!!

Well, it was just a a symptom, not the cause. I was diagnosed with adult onset ADHD. At the same time, I had had it with the benzos. So, I decided to taper off. Not an easy thing to do but the Adderall and the Vyvanse really had a huge impact on the IBS, stress and "anxiety". Once I was refocused, I could take my kind off of things and my problems were solved... BUT...

Sleep was hard in coming. Not because of the stimulant therapy but because I was on benzo's and ambien for decades. I didn't know who to go to sleep anymore. I had to relearn good sleep hygiene. No "blue screens", phones, tablets, etc... two hours before bed. When in bed, I could read for a little but that was it. Bed was for sleeping and I kept the room dark and cold. Lot's of blankets with some weight to them helped settle me down...

Still, I was having trouble. Well, I live in California and cannabis is legal. I do not suggest that this is for everyone but it might work for some. I had stopped "smoking" pot years and years ago. I went to the dispensary and bought a vape cartridge and battery that had "the most potent indica" they had. Indica eases pain, promotes relaxation, and it knocks you the "F" out. Don't get a "sativa" or a hybrid. They will keep you up. It works hella great. I drop right off.

If it is legal where you are. If you can tolerate it. If it doesn't push back on your personal morals/ethics then I urge you to try it. Just before you shut off the light. I can guarantee you will get a good night's sleep.

Wacky Tobaccy... who would have thought?!
Title: Re: Getting a good night's sleep
Post by: araminta on November 24, 2019, 06:06:11 AM
Brizzo - I'm in the UK and cannabis is illegal!   But thank you for your thoughts.   I would just say be careful with the vaping, it's now thought that that can damage the lungs.

I expect there's no one sleep solution to suit everybody   It's probably wise to start with the gentle things first (dark room, sleep hygiene etc.).   But Sjogrens does seem to bring insomnia as one of its symptoms, strange really when we're so tired all the time.