Unable to sleep/nap

[Way2dry]

I seem to have the opposite problem of most people here.  Over the last few months it has gotten more difficult for me to fall/stay asleep.  When I finally do get to sleep I wake up after an hour or so and have trouble getting back to sleep.  I only get about 4 hrs. sleep a night.  I can't even fall asleep to nap during the day.  But the odd thing is that I don't feel exhausted.  It's almost as if my mind and body are disconnected.  I never feel really relaxed either.

I have tried Ambien and Lunestra (?) and absolutely nothing happens.  I had tried Ambien once or twice before I got sick and 1/2 pill would knock me out.

Has anyone else had this problem? 

[SunshineDaydream]

I had trouble staying asleep before. I'd fall asleep with no problem, but then wake up in the middle of the night and have trouble getting back to sleep for a couple of hours. Very frustrating.

I found taking some melatonin helped reset a better sleep pattern. Also important is to try to have a good and steady bedtime routine and "lights out" time. In addition, having good body alignment while sleeping helps prevent reasons for waking. If you want to try melatonin, make sure to check contraindications regarding medications you take, if any. I think melatonin shouldn't be taken with certain medication(s), but I forget which.

[Kathy57]

I have trouble sleeping and I take Melatonin and I use one half to one tab of Ambien when needed.  I always sleep better with a full tab but I try to get by with one half or none if I can do it.

Unlike you, if I don't get good sleep then I feel fatigued to the point of distraction.  I also have an underlying fatigue that is with me no matter how much sleep I get. 

This seems unusual that you are getting such little sleep and don't feel tired.  That concerns me.  I hope you don't "crash." 

I do think that Sjogrens has interfered with the quality of my sleep.  (The quality of our lives!). Have you ever thought of having a sleep study done?  Or, I would ask your doctor if you could try something else for sleep.  lunesta and Ambien are different and yet very similar.  There are other things you could try if you can get your doctor to order it for you.

My rheumatologist ordered my Ambien for me because my PCP gave me a hard time.  I get so frustrated!  I think the only doctor who knows just how sick I am is my Rheaumatolgist!  (Please God, don't let anything happen to him!)

Hope you find good answers and help for your sleep issues.

Kathy

[Sooki]

I was having chronic trouble sleeping or i would be half asleep all night.  My body looked like it was asleep but my mind kept going. 

I can't take any sleep meds because I don't metabolize them in any kind of timely manner and they make me groggy for days (even melatonin and valerian).  I also can't take any stimulants for similar reasons.

I had a sleep study done and found that when I would start to go into REM sleep, my throat would relax and close off.  I would wake up and start over again. In the daytime, I just consciously held my throat open.   I wasn't getting any quality sleep.  A CPAP really helped me sleep.  I still wake up in the night but most of the time can fall back asleep.  I even look forward to going to bed at night.

It might be worth a try.

[irish]

First off, I did a pretty in depth study of Melatonin this past week and it really shouldn't be taken if one has autoimmune disease. I think this has something to do with the way the body makes and metabolizes the melatonin.

I have the same problem with the sleep. If I sleep 5 hours I consider it s blessing. I have had a few times that I have slept 8 hours over the past 20 years, but not many. There was a period of about 3 years that I slept 2-4 hours and had to go to work. It was bloody miserable. Most of the time I don't sleep from like 8 AM or earlier until about 2 AM.

I do occasionally take a nap but it is generally by accident. I am on Zoloft and one tab Lithium a day for my depression. I don't take sleeping pills cause they just stone me by the 3rd day. I have had sleep problems for most of my life and I am now 72. I slept better when I was younger, but not all that good. I have learned that when I am having the bad insomnia is usually when I seem to have more autoimmune symptoms. Years ago I finally figured out that in all probability my insomnia was fueled by my reved up immune system.

To me this makes sense. When the autoimmune disease is reved up or body is kicking out all those cells that are trying to kill us off. Sometimes I think the inside of our body must almost buzz with all the activity going on inside. Just my take on it.

If you aren't on an antidepressant you might want to check with your doctor. They are used as sleeping aides and can help you cope with all the anxiety that our health issues place on us. I know that I would not have made it without my meds. I suffered greatly with anxiety and insomnia when I was young and raising children plus working outside the home. I don't know how I did it when I look back. Good luck. Irish

[SunshineDaydream]

That's interesting, Irish. I used small amounts of melatonin years ago on a few occasions without noticing any ill effects.

Always good to learn new things. After reading your post, I see John's Hopkins advises against it on their webpage about things to avoid when you have lupus and other AI disorders:

Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.  http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

--------

Another website has an explanation for why which involves inflammation:

Melatonin has a number of contraindications, including use by people suffering from autoimmune disorders. One of the common effects of autoimmune disease can be inflammation. In usual cases inflammation is actually a very useful bodily response to infection which can isolate a particular site and prevent the spread of pathogens. In autoimmune diseases however, inflammation can cause severe damage and pain. Many of the effects of arthritis, particularly on the joints, are because of unwanted inflammation and its effects.

Our immune systems are also actually subject to the regulation of a range of different hormones like cortisol, testosterone, and melatonin. Melatonin's interactions with the immune system has been shown to increase inflammation in autoimmune sufferers, potentially worsening their symptoms.

Melatonin can achieve this through one of its many signalling effects. While the hormone's main responsibility may be in regulating our body's day-night cycle, it also has a range of other important functions, one of which is signalling the release of a class of chemicals called cytokines. These are responsible for triggering responses like inflammation, and this mechanism is why people suffering from autoimmune conditions are advised against using melatonin. http://www.healthcentre.org.uk/pharmacy/melatonin-jet-lag-autoimmune-conditions.html

[acer455]

       Hi am 45 and I cant sleep well either I drive my wife crazy cause I don't go to bed until 5am and I sleep for 4-5  hrs then Im back up anxiety and dryness keeps me up my neck and back hurts too. I know what your going though.

[SjogiBear]

I have been having exactly the same kind of sleep issues for at least ten years now - I'm now 49.  I usually don't have any issues getting to sleep providing I follow good sleep hygiene (wind down time, relaxing environment with blackout blind, no alcohol or stimulants etc etc etc) however I rarely get more than about four hours sleep tops.  It seems as if something inside my brain just clicks onto fully awake and I simply cannot get back to sleep again whatever I try.  Sleeping tablets don't really work for me and they're not a good idea in the long run anyway.  I've tried amitriptyline but that doesn't maintain sleep for me and in any case is far too drying with the Sjogrens.  Funnily enough my body seems to cope with the sleep I do have and I also cannot sleep during the day - I may be able to doze but still have full consciousness of my surroundings.  I don't like to think too much about what this might be doing to the state of my brain in the long term!

[araminta]

I find a technique of progressive muscle relaxation often helps when I can't sleep.   In case you don't know what that is:   you start off tensing one set of muscles (say your feet), slowly count to ten, then relax the same muscles while you count to ten.   Notice the difference between tense and relaxed muscles.   Do that a few times, then move up to your leg muscles and do the same thing.   And so on up your whole body, including facial muscles.

[Navigator]

I had a lot of trouble but have now worked out a non med approach that most often works.  I take so many meds I did not want to add sleep medicine without trying non med approaches.

You don?t say how old you are but menopausal women can develop sleep issues without SJS being involved. 

I follow the AMA sleep hygiene steps and it mostly works for me.

1. Exercise for 45 min to an hour before 2pm every day.
2. No caffeine after noon....none.
3. Keep temperature in the room 70 or below. 68 is preferable according to them.
4. Dark room.
5. humidifier next to my head on low(ok a little light is on but can not have everything)
6. No alcohol most days....once in awhile a small glass of wine but no later than 7pm.
7. Drink water during the day to stay hydrated but cut it off at 6pm...for obvious bathroom break reasons.
8.  No dedicated use of tablets, computer screens, tv after 7pm.  The blue light interferes with sleep. (This one I violate but when I was first having real problems I did give it up and watched shows on demand earlier in the night the next day or so.)  Now I make sure to stop using the above and read (a real book) or knit for 1-2 hours before bed.
9. Part of falling asleep is your body cooling off... a trick they say is to take a warm shower an hour or two before bed and as your body cools off after it stimulates sleep.  I have tried that and it helps but I do not do this religiously.
10. Always (even on weekends) wake up and go to bed the same time.
11. No naps.

This works for me. I started out following all and then have gotten a bit laxer on some to see how I react.   It is trial and error.

[SjogiBear]

Navigator and Araminta - what you have recommended works very well for those people who have trouble getting to sleep or those new to insomnia.  Unfortunately these methods seem to have little effect on sleep maintenance . . . I have tried all of these suggestions and still follow them as they are very good ideas for helping our mental state and calming down any general anxieties etc.  Unfortunately I do not believe that there is very much out there to help with staying asleep and improving sleep quality.  I would love to go to a sleep study centre but sadly on the NHS in the UK I think you have to be very lucky in having a GP who will refer you for this!

[Way2dry]

Thank you all for your responses.  Everyone here is so helpful, caring and supportive.  That helps so much.

SjogiBear -  Your sleep issues sound exactly like mine with the exception that I can't fall asleep.  This part of the problem just started a few weeks ago so I tried sleeping pills again.  And again they didn't really work for me.  When I finally get to sleep I still wake up every hour or so and have trouble getting back to sleep.  So frustrating! 

Irish -  I think you're right about the inflammation. Many of my Sjogrens symptoms have gotten worse over the past few weeks. (Maybe a flare?) Then I get stressed out and anxious with worry. 

Kathy - It is very strange that I get so little sleep yet I'm not exhausted.  I am a bit concerned about that too.  I have some very physically active days yet I'm still not tired and still can't sleep or nap.  I've wondered if something neurological could be going on.  I tried melatonin early on (on the advice of my rheumy) and like the sleeping pills it did nothing for me.  You're so lucky Ambien works for you.

Question about sleep studies:  I get up many times a night to go to the bathroom.  Can you do that in a sleep study or are you hooked up to a machine? I don't know a thing about how they work...

w2d

[sunflower]

Way2Dry,

I am awake with you!  I tend to have a sleep disorder but amitriptyline has helped me survive.  My doc tried many antidepressants and a tricylic was what worked for me.  Melatonin didn't help a wink.  Now that SS has kicked in, my doc and I may have to revisit that but only if it doesn't take me back to the place where I couldn't sleep and was not tired.  That is a risk for "crashing" as was mentioned.  I came close.

A system I developed which has helped my mind stop spinning - and go back to sleep if I wake up - every night for the past 5 years or so:

Relax everything, even my face
Take a deep breath, exhale slowly
Start at 10 and count backwards to 1, one count per slow exhale
Focus on breathing, slowing it down
It takes a while and if I get distracted, I start at 10 again

Sounds flaky but it helps my mind slow down and focus on something boring, like breathing.

My amitriptyline has been a life saver for me and I can increase it if I need to.  I'm just concerned about it dehydrating me more.  I am having more trouble again and am wondering if SS is contributing.  As my symptoms develop and change, there definitely seems to be a lot happening on the interior!

All the best to you.  Keep trying different things.  I did a sleep study too and periodic limb movements were one problem.  I think part of that was leftover restless leg syndrome from med trials.  We each have to find what works for us.  It won't always be this way!

[LisaMarie]

I go through spells like this.  Sometimes I am awake for 2 days followed by sleep for two solid days.  I've learned that sometimes using relaxation techniques can at least help me feel "rested" physically.  There was a time that it would last a week or longer.  But at least now it hasn't been longer than two days lately.

[MetalFae]

That's interesting, Irish. I used small amounts of melatonin years ago on a few occasions without noticing any ill effects.

Always good to learn new things. After reading your post, I see John's Hopkins advises against it on their webpage about things to avoid when you have lupus and other AI disorders:

Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.  http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

--------

Another website has an explanation for why which involves inflammation:

Melatonin has a number of contraindications, including use by people suffering from autoimmune disorders. One of the common effects of autoimmune disease can be inflammation. In usual cases inflammation is actually a very useful bodily response to infection which can isolate a particular site and prevent the spread of pathogens. In autoimmune diseases however, inflammation can cause severe damage and pain. Many of the effects of arthritis, particularly on the joints, are because of unwanted inflammation and its effects.

Our immune systems are also actually subject to the regulation of a range of different hormones like cortisol, testosterone, and melatonin. Melatonin?€™s interactions with the immune system has been shown to increase inflammation in autoimmune sufferers, potentially worsening their symptoms.

Melatonin can achieve this through one of its many signalling effects. While the hormone?€™s main responsibility may be in regulating our body?€™s day-night cycle, it also has a range of other important functions, one of which is signalling the release of a class of chemicals called cytokines. These are responsible for triggering responses like inflammation, and this mechanism is why people suffering from autoimmune conditions are advised against using melatonin. http://www.healthcentre.org.uk/pharmacy/melatonin-jet-lag-autoimmune-conditions.html

*JAW DROP* Holy crapola Batman!! I had NO idea! In fact - I worked in Rheumatology and I don't think I heard anything about this. Zip, zilch, nada.  WOW. I'm taking Melatonin 10mg the max dosage at night! I switched because taking Doxylamine is heavy duty and causes memory issues and some histamines irritate the bladder... I thought natural would be better of course. Go figure!

Ugh. What do we do, then? Elavil is just horrible because it's an anti-cholinergic and Sjogren's patients will have worse symptoms with it, plus that medicine is notorious for horrible weight gain. I absolutely refuse to take anti-depressants because they make my stomach stop and I end up SMOKING. Or vaping. Or chewing nicorette gum 24/7 to stay focused and not in a haze and mostly to stimulate my bowels because they just STOP on SSRI's and SNRI's. The only one that didn't do that was Cymbalta and go figure my ALT/AST labs shot up with that medication so...  Bupkis for me! I even tried Buspar and at first it was relaxing and I thought helping with sleep but then a few days later INSOMNIA. Apparently that's how that drug does... Weirdest thing, ever. I hate these psych meds! They do nothing but make me worse in that they dry me out, clog up my bowels and make me apathetic and uncaring but happy about not caring about anything! Not a good combination. ALL of them did that. ...Except for Cymbalta.. ;___;

Lunesta? I liked Lunesta when I took it... ;__; Valerian root is okay, but it works like a Benzo like Xanax and so it makes me depressed the next day and weepy if I use it too much.