Wednesday, July 22, 2009

Sjogren's and Sleep

Image found here.

Last night was one of those nights.

You know. One from which you awake with gritty eyes, furry tongue, and feeling as though you need another eight hours of nighttime. One that began with creepy crawly restless legs, achey muscles, and burning sensations in feet and toes.

Since my Sjogren's experience began, I have had too many of those nights.

Turns out that I'm not alone, as noted by this study published in Oxford Journals Rheumatology. (Note: pSS = primary Sjogren's Syndrome, RA = rheumatoid arthritis.)

Sleep deficit (difference between need of sleep and actual sleeping time) was significantly higher in patients with pSS when compared with healthy matched controls (P<0.0001),>P<0.001). When trying to fall asleep, patients with pSS were significantlymore often disturbed by muscular tension (45%) and restless legs (24%), than patients with RA (12%, P<0.01>P<0.01), and they were also significantly more troubled by nocturnal pain than patients with RA (P<0.01).> significantly more disturbing by awakening during the night and was awake for longer periods.

Makes sense to me. I can think of several reasons that a Sjoggie would have trouble sleeping. Let's see......there's the obvious discomforts of a dry mouth and dry eyes, with the resulting awakening to drink water, get rid of said water, and apply or reapply eye drops.

As noted in the study above, those bizarre sensations from restless leg syndrome and peripheral neuropathy, as experienced by many Sjoggies, make sleep difficult. Autoimmune joint and muscle pains add even more opportunities to rob someone of restful shut-eye.

For me, there are other reasons why some nights are sleepless, even if I'm not in Seattle....

Early on in my disease process, I would lie awake at night simply wondering what was happening to my body. I didn't have a diagnosis, and obviously no treatment. I tossed and turned, not only from physical symptoms, but also from anxiety and stress. Once I did have a diagnosis, then my late night worry sessions focused around my future with Sjogren's: what would this mean long term for me and my family? Would I feel this crummy for the rest of my life? If not, then when when when would I begin to regain some sense of normalcy? Would I be able to continue to work? If I didn't work, could we survive the financial repercussions of that decision?

Treatment with prednisone added another element of sleeplessness due to the side effect of insomnia. The additional side effect of increased appetite - in my case, carbohydrate cravings - meant that many nights found me chowing down on Cap'n Crunch at two am.

To further complicate matters, when I am unable to sleep, my herd of critters are wakeful too. No matter how quietly I try to get out of bed, Maggie and the gang show up all frisky and ready to play. Or get treats. Which means that settling myself back into bed means getting everyone else quieted down too.

Well. What's a Sjoggie to do?

Some basic guidelines to encourage restful sleep can be found on Sjogren's Syndrome: A Guide For The Patient, which include avoiding caffeine after lunch, basic stretching and soothing biofeedback suggestions, modifying the bedroom environment, and establishing a consistent wake-up time.

I have found that adding a few other modalities help me to be more successful in getting a good night's sleep.

Seeking appropriate evaluation and treatment for my restless legs and peripheral neuropathy was enormously helpful. You can read more about these conditions in a previous post here. The medications prescribed for me are very helpful, and although they do not completely eliminate my symptoms, they do provide significant relief.

I have found that if I pace my activities during the day, I sleep better at night. When I am physically taxed and have overstepped my energy limits, I take lengthy naps during the day and have increased joint and muscle pain leading to increased difficulty falling asleep at night.

A high carb bedtime snack seems to help me fall asleep. While I probably should make a healthier choice than Cap'n Crunch, there is scientific evidence that suggests that eating a high glycemic index carbohydrate a few hours before bedtime shortens onset of sleep.

This may seem silly, and remember that we are talking about Weirdo Julia here.......but changing my bedside clock from a bright digital display to an old-fashioned wind up alarm clock helps my frame of mind when waking in the wee hours. Somehow, softly illuminated hour and minute hands are more calming to me than the time starkly stated in bright, specific numbers. Big Ben's glow-in-the-dark face is much more friendly, and I like listening to his soft tick tock. I can't read the exact time when I'm squinting without my glasses in the dark. That's a good thing.

I have stocked my nightstand drawer with a few essentials such as lip balm, eye drops, tissues, and I plunk a water bottle nearby. I also have learned that flannel nighties stick to flannel sheets. Not comfy. FYI.

A bedtime routine is also helpful to me. No, I'm not going to go into details here. You have to develop your own special routine that works for you.

Good luck finding Mr. Sandman - and nighty night.


Wendy said...

Excellent and timely post. Last night was one of 'those' nights for me too. For once, I fell asleep easily. But come 1AM, Bam! Wide awake. For no good reason. Some Tylenol, a bowl of Cheerios...and three hours of tossing and turning (concentrating on breathing, etc, etc.) finally does the trick. Slept from 4 to a shameful 8AM. (Yes, I do peek at the clock, but how else will I know how tired I've got a right to feel??) So much for good intentions to get an early start today.

Anonymous said...

Thank you for posting this :) You described a lot of what I experience (although I am waiting on a diagnosis. I see the rheumatologist for the 2nd time next week). I feel more normal reading the experiences of someone else.

Frustrated in Indiana. said...

I am reading this at 1am. I am seeking info pertaining to sleeplessness and a second time around herrendess rash on arms and shoulders this time. I have primary Sjogren's. Looking back i had it since my late 20s early 30s. Im now 55. Yes everything you mentioned the eyes the tendon pain (even though I workout), the dryness etc. I use childrens lullabies or soundscapes on my television (when husband not home).i now developed Pulmonary MAC and have more concerns. I also try reading at times. I would use buttered pasta to fall asleep in the past except now i eat a nutritarian diet. It is truly frustrating. Bless you all.

Donna said...

I am so grateful to have come across this foundation. I am waiting diagnosis as well as an RA sufferer for 30 years. I am 56 and this has thrown me for a loop. Trying to get educated and learn how to deal with dry mouth and sandpaper throat, a voice that is always hoarse. I have started salagen. It is giving me headaches that are almost unbearable. Please tell me this is temporary side effect. Please tell me I will be able to enjoy life again. Prednisone is the only thing that takes the symptoms away. I know I can't stay on that. I am so sorry for all your sufferings.