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Sjogren's Syndrome Support

Can't Stand Another Night

Okay. . . I may be stating the obvious here, but I'm not sure I can stand many more nights (and subsequent mornings) plagued by these SS symptoms.

Before going to bed I slather myself with mouth and eye gels, sleep with a humidifier going, and have a constant supply of water, mouth spray and eye drops by my bedside. But still I am bothered by dryness, joint and muscle pains, insomnia, nightmares, panic, and (dry) sinus headaches each and every night.

I know that this must be a problem that every one of us deals with and was wondering what others do to "make it through the night."

I recently came across this article about sleeping in wool sheets and underwear:

http://www.liveinthenow.com/article/can-wearing-wool-in-winter-reduce-fibromyalgia-pain

I know stuff like this sounds crazy, but has anyone found anything that helps alleviate the pain and dryness at night? Does anyone have tips to offer? I'd try sleeping upside down at this point if I thought it would help!

Liz

Wool? Who knew, and I just bought new cotton comforters! Figures! Everything I have for the bed is 100% cotton, so maybe I"ll try the woolen underwear! I already have a few pair of the socks!

Thanks for the info Liz!

I've started taking 5mg of melatonin when I just have to get some sleep.

Otherwise I too am miserable all night.

Andrea

I can’t tolerate the feel of wool next to my skin. For me all I want to do is rip it off and then I spend the next few hours scratching! I can understand the research though. It must warm the muscles. We often use heat to soothe sore muscles so this all makes sense.

I've had all of the above for so long I just accepted it as the new norm. Oddly enough when the fatigue is at its worse, I crash and sleep like a rock and wake up not rested at all so there is no winning that one for me. I'd love to hear about anything that works.

I can only offer suggestions for dry eye. Before Restasis came out, tear duct plugs were very helpful. I now use Restasis and it helps a great deal. Hope this helps.

Wool is a no, no for me. What has helped some with the pain is a Comfortaire bed with adjustable air chambers which takes pressure off the body. I use magnesium oil spray which should be washed off after twenty minutes for muscle cramps. MSM cream sometimes helps painful knees and such.

A massaging seat and backrest that fits in a chair and a moist heating pad also makes pain a little more bearable.

This time of year with the dramatic changes in humidity and temps is just miserable.

Sorry but I don't know how to relieve the dryness.

From what I read, the study wasn’t well designed. It compared wool long johns to what? They didn’t ensure constant temp, etc. why wouldn’t silk long johns do the same?

That said, I have found that evoxac has made a real difference for me, especially since I would wake up panicky from not being able to swallow.

I am comforted by a sleeping pad on my abdomin. My acupuncturist told me to keep my belly warm and it would soothe all my aches all over and it often does.

Edit…heating pad!!!
For some reason I can’t edit when typing from my phone

Nomad thanks for the tip.

I feel your pain. My joints and muscle pain have been worse than ever lately, especially at night. Along with extreme dry eyes... No amount of ibuprofen or any brand of eye drops/gels seem to be really helping.

Ive old recently been diagnosed... but I either sleep for days and don't get out of bed or can't sleep at all and go several days struggling to get by my daily schedule...

I've tried looking up treatments and remedies... is there ANYTHING that really WORKS to assist in lowering the pain or stress throughout your week?? Any small exercises or daily routines recommended??

Thanks everyone for your tips and suggestions.

I thought that the wool thing seemed a little "out there" but I thought someone may have tried it. But the overall idea of keeping the joints warm sounds totally plausible and so I'll be giving that heating pad a try at night.

I'll also look into Magnesium creams and oils. Didn't know you could get it in topical form. I'm already on restasis and have found some improvement in my eyes.

Stoney, I too feel like my nighttime panics are brought on by the dryness. I assumed my body was going in to panic mode because I wasn't breathing correctly, but maybe it has to do with swallowing instead. When I told my psychiatrist about it he just said, "Oh that's the dry mouth thing" and told me to take an extended relief Xanax before going to bed. I don't want to do this each night for obvious reasons. Melatonin would be better option.

Never thought to bring the panic up with the GI doc but I have an endoscopy scheduled for Wednesday so the timing is perfect. Swallowing in general has become a big issue for me.

Like Swootie, I've also wondered if there were any things I could do during the day to help me sleep better at night. I've just begun to take both restorative yoga and beginner's Tai Chi. I only have a week's experience with each of them so I'll let you know if I feel any improvement. Nomad, have you found that acupuncture helps?

This is why I love this place. I'm so glad I found this support group. Thanks for all your help.

Liz

I take a third of a 10mg ambien every night. Believe it or not (perhaps placebo effect) it helps me to fall asleep. Not always stay asleep though. For me it's my mouth. Sip water frequently, then have to hit the bathroom.

Sometimes I feel so defeated. Tried Pilocarpine. It makes my mouth watery for a few minutes. Watery like just before you are going to puke. That's a real treat. Then I sweat profusely. Like I'm not hot enough already.

I have used acupuncture primarily for my trigeminal nerve pain and it partially helped. I also go for a massage when my body pain is very bad. And I do find that this helps. I often sleep in a recliner chair to stop reflux and this works very well. I have a little table next to me with some water and sip it quickly if I wake up due to dry mouth. I use my preservative free eye drops a few times a day, but always before sleep. I do find that the heating pad over my stomach is oddly relaxing and it helps with minor to moderate body aches. This truly works for insomnia and definitely will help with mild body aches.

However, I do have a suggestion for moderate body aches. And another one for bad body aches.

For moderate body aches I make my own compounded cream and it DOES work. Sounds nuts, but I have found that mixing 1) Aspercream and 2) Ortho-Nesic Pain Relieving Gel works for me. You can only get the ortho nesic in a few doctor's offices or on line. It's actually cheaper on line. In this cream is: Camphor, Menthol and a tiny bit of capsaicin. It does not burn. I mix it with the Aspercream and I think it helps with swelling and nerve issues. I rub it on body aches...all over my body. I don't do this daily. If my back aches, I find that a couple of days or rubbing this on really helps me. I also sometimes takes Robaxin (an older drug).

Bad body aches: I have seen on other websites that there is this RX called Diclofenac/Flector that is best used in a cream, but also comes in patches (less helpful, but works too). My rheumy once gave me the patches. However, I read the directions and it kind of scared me. I don't remember them exactly, but one thing I kinda recall was that there were restrictions about using any OTC analgesics if you use this RX, as well as other med restrictions. It was something that had to be used with thought and care. However, I have read posts from folks with very bad arthritis who use this cream (in particular) who say it is very helpful. My impression is that it shouldn't be used unless the pain is very bad.

Another thought I had was to consult with a compounding pharmacist...especially if you have tried a variety of things and it either doesn't work or you have too many side effects. Mine has come up with creative things to put on my facial nerve pain and it has helped.

I have a few solutions that I've used my self to get more sleep. Most of this stuff came from serendipity.

When I'm too hot, I use one of those cryopacks wrapped in a damp wash cloth and move it around my neck and shoulders. Works best if you let it melt a little till it gets mushy.

Dry nose: vaseline up the nose. If you sleep on your back (doesn't have to be flat-out) some of the stuff gets soft and runs into the sinus just above the nostril.

At night I rinse my eyes with lotsa Bausch and Lomb eye wash then put in my eye drops. I found that my eyes attract gunk since there are no tears to continuously flush the dry eye of SS. Also use throughout the day when it feels like I need it. Use my eye drops every two hours.

At night I couldn't move, had terrible pain. I kicked dust at my HMO and bulldozed my way into a pain program. At this HMO the program was geared to chronic back pain, fibro, and physiological pain reactions. For their criteria, I really didn't belong. The instructor didn't like me very much. Oh well, I'm my own best advocate.

However I did come away with some tips for relaxing and psychological stuff to work with to ease the pain--really helped with panic of pain onset. And, came away with oxyC every 12 hours, only 60 prescribed at a time. Usually only take one a day. During the day I take acetomenophen arthritis for pain--time released--my own solution.

This may sound silly, but I hang up a load of freshly washed clothes in my room--as it dries, moisture is released--never could get a humidifier to work. Bunch of bath towels works best.

I make sure that I'm up and around enough during the day to feel tired when I go to bed. This can be as little as small tasks around the house or walking (I walk my dogs). Something to keep me moving through out the day.

These are things I've found out for myself. Hope you find something in here that can work for you. This stuff all or some of it works or doesn't work most of the time. There are still times it doesn't--not 100%

You got to hold on.

Great tips. Never thought of the Vaseline for my nose. Make sense that some would work its way into my sinuses. Definitely trying it tonight1

USAgurl said:

I have a few solutions that I've used my self to get more sleep. Most of this stuff came from serendipity.

When I'm too hot, I use one of those cryopacks wrapped in a damp wash cloth and move it around my neck and shoulders. Works best if you let it melt a little till it gets mushy.

Dry nose: vaseline up the nose. If you sleep on your back (doesn't have to be flat-out) some of the stuff gets soft and runs into the sinus just above the nostril.

At night I rinse my eyes with lotsa Bausch and Lomb eye wash then put in my eye drops. I found that my eyes attract gunk since there are no tears to continuously flush the dry eye of SS. Also use throughout the day when it feels like I need it. Use my eye drops every two hours.

At night I couldn't move, had terrible pain. I kicked dust at my HMO and bulldozed my way into a pain program. At this HMO the program was geared to chronic back pain, fibro, and physiological pain reactions. For their criteria, I really didn't belong. The instructor didn't like me very much. Oh well, I'm my own best advocate.

However I did come away with some tips for relaxing and psychological stuff to work with to ease the pain--really helped with panic of pain onset. And, came away with oxyC every 12 hours, only 60 prescribed at a time. Usually only take one a day. During the day I take acetomenophen arthritis for pain--time released--my own solution.

This may sound silly, but I hang up a load of freshly washed clothes in my room--as it dries, moisture is released--never could get a humidifier to work. Bunch of bath towels works best.

I make sure that I'm up and around enough during the day to feel tired when I go to bed. This can be as little as small tasks around the house or walking (I walk my dogs). Something to keep me moving through out the day.

These are things I've found out for myself. Hope you find something in here that can work for you. This stuff all or some of it works or doesn't work most of the time. There are still times it doesn't--not 100%

You got to hold on.

I get cashmere sweaters at goodwill to use as undershirts in the winter. They are wonderfully soft and so warm. I have Raynaud's that can get pretty bad in the winter so wool gloves are a must. I even have several pairs of wool liner gloves that I wear inside. So much better than poly fleece. I have bought a lot of gloves trying to find ones that will keep me warm and wool wins. Also wool socks, from super light weight ones to heavy terry ones. I don't get cheap ones because they are usually scratchy but try to find good merino wool gloves on sale - online at REI, LLBean, WinterSilks, etc.

I take about 600 milligrams of magnesium at night, it is a natural muscle relaxer and will help you sleep better. I also use organic coconut oil as a moisturizer, everywhere!!

A physio recommended 'yoga nidra' to me for sleeping problems. If you put that in the search on youtube it comes up with several different ones. I haven't had the chance to try it myself though, our internet's been playing up!