Author Topic: Getting a good night's sleep  (Read 695 times)

araminta

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Getting a good night's sleep
« 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.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

araminta

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Re: Getting a good night's sleep
« Reply #1 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.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

irish

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Re: Getting a good night's sleep
« Reply #2 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

Joe S.

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Re: Getting a good night's sleep
« Reply #3 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.
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Liz D.

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Re: Getting a good night's sleep
« Reply #4 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.
55 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

araminta

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Re: Getting a good night's sleep
« Reply #5 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.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Deb 27

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Re: Getting a good night's sleep
« Reply #6 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.
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Sharon

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Re: Getting a good night's sleep
« Reply #7 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!).
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
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irish

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Re: Getting a good night's sleep
« Reply #8 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

araminta

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Re: Getting a good night's sleep
« Reply #9 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.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Kathy57

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Re: Getting a good night's sleep
« Reply #10 on: July 02, 2019, 09:44:16 PM »
Araminta,

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.

Kathy
« Last Edit: July 02, 2019, 09:48:47 PM by Kathy57 »
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

araminta

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Re: Getting a good night's sleep
« Reply #11 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.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Sharon

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Re: Getting a good night's sleep
« Reply #12 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.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Kathy57

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Re: Getting a good night's sleep
« Reply #13 on: July 05, 2019, 09:25:40 AM »
Araminta,

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. 

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

araminta

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Re: Getting a good night's sleep
« Reply #14 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. :)
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.