Seeking Sleep

Seeking Sleep

I used to be a world-class sleeper. Once I was visiting my parents, sleeping on the couch in the living room. A tornado warning came up in the wee hours of the morning. Sirens were going off; radios and lights were turned on; coffee was made; discussions were had about seeking shelter. I slept right through it. Thought my family was telling a big story when I finally woke up the next morning.

RA has all but demolished that blissful, dreamy state.

I can still fall asleep, but I seldom sleep through the night. I wake up, afraid to look at the clock and calculate how little I’ve slept and how long it will be before the alarm goes off. I stay in bed knowing that my body is getting some rest even if my brain is not, and hope that my eyes will close once again. Often I give up after about an hour and read or cruise the net on my tablet. People are no longer surprised to get emails from me at 3:00 am.

Since my sleeplessness seems to be tied to how well my RA is controlled, not being able to sleep is an early warning sign that I’m flaring or (worse) my latest treatment is failing.

Being a “fix-the-problem” kind of girl, I’m all about trying to make RA behave. Usually when I’m flaring, the first step is to add a short course of prednisone. For me, that’s an excellent way to calm down temporary symptoms. The only problem is (as we all know) prednisone can cause sleeplessness.

The other alternative is to try to treat the insomnia rather than the RA, and I’ve tried all kinds of things.

I’ve done the holistic routines: warm baths, chamomile tea, melatonin, etc.

I’ve also tried various medications.

For various reasons, I generally only take acetaminophen (for example, Tylenol) for pain and I often take a couple before bed. This helps me go to sleep, but it doesn’t help me stay asleep for more than a couple of hours.

My rheumatologist suggested that I try the “PM” version of acetaminophen which includes Benadryl, an antihistamine that is known to make people drowsy. That worked. For about three nights. Then it quit working.

After a few nights of non-sleep, when I have gotten severely sleep-deprived, I’ve taken a gabapentin. Gabapentin is a medication that works on the nerves. It’s often prescribed for fibromyalgia, to prevent seizures, and to prevent pain and damage from shingles infections. It also increases certain sleep patterns (yes!) and calms things like restless leg syndrome (RLS). I’ve found that with RA I have kind of an all-over RLS. Often I’m not in pain, but I just cannot get comfortable. So gabapentin really helps. I wake up feeling wonderfully rested. My rheumatologist even suggested that I take one every night.

But like any medication, gabapentin comes with its share of side effects. I take approximately 15 prescription medications. I don’t need to add more drugs and more side effects. The one that bothers me the most? It causes me to gain weight (just like prednisone). As one of my new year’s resolutions is to lose another 25 pounds, this isn’t helping. As a result, I try not to take it more than once a week or so.

But I’m hopeful that there may be a solution on the horizon. I had my annual checkup with my primary care physician this week. Under my list of complaints, I indicated insomnia and explained to her the issues I’d been having and how I’d tried to solve them. She suggested that I try a lower dose of gabapentin. I’d been taking the standard 300 mg dose, but it also comes in 100 mg capsules. We are hopeful that this is enough to sustain a decent night’s sleep but not enough to cause the weight gain and other troublesome side effects I experience. Fingers crossed. Sufficient sleep is an important part of keeping RA under control.

Your takeaway from all this?

Well, I am not qualified to give medical advice and, even if I were, I certainly wouldn’t recommend that everyone go out and take another prescription medication. What I do recommend that if you’re having a problem, that you talk to your healthcare providers about it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (26)
  • Mary Sophia Hawks moderator
    2 months ago

    I agree! Sleep is extremely important in our regimen. Especially when you have an accompanying illness like fibromyalgia. I’m fortunate that my medication works well most of the time. Talking with your MD is the best plan. They can’t fix it if you don’t tell them.
    MS

  • Dana Williams
    9 months ago

    It does seem that many of us with RD are challenged in the same way when it comes to sleep. I had no problem with sleep until I was re-diagnosed after a 35 year remission. Then, falling asleep was less of a problem then remaining asleep. 2, 3, or 4 hours later my level of discomfort was such that I would eventually just get up. A few nights in a row like that, and there don’t seem to be any resources left to just deal with the disease. I’ve been taking xeljanz, tramadol (at bedtime) and gabapentin for quite some time now, and this regimine seems to give me the most relief during the day and lets me fall asleep. I added one capsule of medical MJ (not illegal in my state – yet, and I’m a “card carrier”) to the bedtime routine over 8 months ago, and now I’m averaging 7-8 hours of sleep a night. I think this has made a significant difference in managing my overall RD symptoms.

  • ldonaldson
    9 months ago

    Wow @DanaWilliams, I am so glad that you have been able to find a great combination of treatments to get 7-8 hours of sleep a night. That’s wonderful! There have been many times that I’ve wished medical MJ were available to me. I use CBD at night, and that seems to help for now at least. It must have been very upsetting to be re-diagnosed after a 35 year remission. I wish you the best of luck in getting it under control again.
    -Leanne, RheumatoidArthritis.net Team

  • scatcat
    9 months ago

    I, too, take 100 mg gabapentin.occassionally. i have taken as much as 500 mg, but even with the 100 mg, I am groggy and a little dizzy in the mornings. I take generic provigil for extreme fatigue already.. Gabapentin is my go-to on Friday nights after I’ve worked all week and I know I will not sleep well. I am always asleep within 2 minutes (no exaggeration, sometimes less) even without extra medication, but I don’t stay asleep. When I wake up at 3:30 am, i am sore and my mind is racing. The gabapentin helps me sleep through the entire night. It’s worth the hour I must spend drinking coffee on the couch the next morning. If I take it for several days in a row, then decide not to take it, I will not sleep well at all, but only for about one night. My rheumatologist wants me to take it during the day, as I also have fibromyalgia, but I would not be able to work if I did. I jyst recently developed a severe itchy rash after taking a muscle relaxant, so I am hesitant to try others. I had taken that one several times before.. I think the gabapentin (occasionally) is going to have to be enough for now.

  • Zeus
    9 months ago

    I’ve been taking sleeping pills for years & like y’all, they weren’t working either. I read in last month’ Newsletter about taking muscle relaxants as a sleeping pill alternative. I’m now sleeping so much better because I no longer curl up in a ball @ night. I usually get up twice instead of the 5-6 times before. Because of my age, I need to go to the bathroom during the night. It’s so much easier to get back to sleep when I’m relaxed

  • CaseyH moderator
    9 months ago

    Thanks for sharing, Zeus! Glad to hear you’ve found something that provides you with some relief and much-needed sleep! -Casey, RheumatoidArthritis.net Team

  • Ruthieq
    10 months ago

    I find on the worst nights of no sleep, I have twitchy legs or feet mostly. I have neuropathy from chemo for breast cancer, and the pins and needles seem more pronounced at bedtime. I used to take gabapentin then lyrica awhile ago but tapered off these because of weight gain. I used to suffer through with an occasional Tramadol. But didn’t like the hoops we now go through to get narcotics, plus I felt it wasn’t a narc worthy thing. I finally tried CBD oil under the tongue in the afternoon before dinner. I have been using less and less of my sleeping pill as this CBD oil (from hemp not marijuana) has worked to reduce the nerve firings and also relaxes me. It is legal in all 50 states and no Rx required. I get sleep from my sleeping pills, but not real quality sleep like I do with the CBD.

  • CaseyH moderator
    9 months ago

    Great share, Ruthieq! Glad to hear you’ve found something that provides you with some relief and sleep! And thanks for sharing this with our community. Also, I just wanted to mention that I’m so sorry to read about your breast cancer battle. You are a fighter friend! Please know we’re here for you and thinking of you! -Casey, RheumatoidArthritis.net Team

  • Kate Pinches
    10 months ago

    What works for me is cannabutter. Natural. Good night’s sleep…8 hours every night…..plus no pain.

  • farmchick
    10 months ago

    I had finally decided that getting a reasonable amount of sleep was impossible. However, about 4 months ago, after encouragement from my husband, I got a medical cannabis license and then on January 1, our state of California made cannabis legal without a license. In these four months I have had three extremely positive health improvements. First of all, after 20 years of taking “anti-depressants/anti-anxiety meds, About six weeks after beginning cannabis, I dropped that prescription and feel I have no need of them. For the past four-five years my blood pressure has been up and down. Since the cannabis, it has been stabilizing. Yesterday my blood pressure registered at 119 over 74. Last of all, it’s the best sleep medication I’ve tried. While I occasionally have a relatively sleepless night when our stress situation rises (my husband and I are caregivers for his mother who has Alzheimer’s), by far the majority of nights I sleep well. I still feel like getting up at 4:30am to 5am, but I do go to bed between 9:30-10pm. Like all medicines, cannabis works differently with each person, but thought I would offer it as one alternative.

  • Carla Kienast author
    10 months ago

    Thanks for your story and yet another compelling argument to legalize it — which it isn’t here in Texas. Not that I have every tried cannabis (wink, wink, nod, nod) but IF I ever had (say when I was in college), I would probably agree with all your points, including the sleep. Makes me want to move to California, or Colorado, or Las Vegas …

  • cheeflo
    10 months ago

    I, too, have trouble falling asleep and staying asleep. Sometimes I just lie still for hours and at some point manage to fall asleep, only realizing that I have slept when I wake up in the morning.

    Couple of things … Celestial Seasonings has a Sleepytime Tea Extra that has valerian as an ingredient, which has a sedative effect. It costs slightly more than the regular Sleepytime Tea, which is just a chamomile tea and not as effective. I buy it on Amazon for a better price than off the shelf.

    I like to read and browse on my iPad, but if I am on it too late into the evening, it will aggravate my wakefulness when I do go to bed. I bought, again on Amazon, amber goggles that fit over my glasses and block the blue wavelength light that TV/computers/tablets emit. That blue wavelength suppresses melatonin, which is a hormone that the pineal gland secretes in response to darkness, and as been linked to the regulation of circadian rhythms. I have experienced a marked difference in the amount of time it takes me to fall asleep and the intervals of sleep seem to be longer, even though I still wake up periodically through the night. Falling back asleep after waking also seems easier.

    https://www.amazon.com/gp/product/B003OBZ64M/ref=oh_aui_detailpage_o09_s00?ie=UTF8&psc=1

    Hope that helps.

  • stokesr18
    10 months ago

    I take 1200 my of gabapentin a day and I have gained so much weight and have a hard time getting sleep. I am going to try and wean myself off of gabapentin and see if I can take less. I just tried a sleeping med from the health store to see if this will help me get more sleep.

  • Monica Y. Sengupta moderator
    10 months ago

    For me it’s a complete toss up: I either can fall asleep easily but not stay asleep or can’t fall asleep initially and then pass out for 12 hours…and still need more sleep after that.

    More often than not though, I experience that episode of Friends where they all stay up at night for various reasons.

    Great article!

  • Carla Kienast author
    10 months ago

    Thanks for the compliment. It seems that sleeplessness is a common issue among RA sufferers! Good luck with your search for sleep as well.

  • Larry Sawyer
    10 months ago

    Carla,
    I have tried all on your list unless you forgot a concoction or two.which considering the different things you have tried is only natural. For sleep, I have tried everything the docs dispence including sleeping pills with the same reults that you report. Being a natural born lab rat i started to mix and match that which I had on hand. About five years ago i stumbled on a formula discussed below which I only share with you because your my friend.
    Two ounces of Jameson with 2 milligrams of cyclobenzaprine, about 1 to 1 1/2 hours before bedtime. I like my Jamey on the rocks with a splash of water and I sip it slowly. My bride of 49 years is also a Jamey user so I will mix drinks for both of us and but go solo on the flexeral (Psyclobenzaprine). I only use this potent about 3/4 times a week. I have found that when I fall behind with my sleep it is hard to recover and get som sleep without some help. but once I have a good night sleep, i get 2 or 3 nights without help.
    2 milligram portions of psyclobenzaprine are only available from a compound farmacy. Standard pharmacies smallest units are 5 milligrams and this is far TOO MUCH.
    Cyclobenzaprine is a muscle relaxant and potent. Its the poisen Indians put on the tip of their blow gun darts. be well, hoping this helps Larry

  • Carla Kienast author
    10 months ago

    Thanks for sharing. I’m a Glenlivet girl myself, although I’ve been known to have a sip of black label Bushmills on occasion. I try to be careful with mixing alcohol with anything that makes me sleepy, so for me, it’s usually a one-or-the other (Scotch or gabapentin). I’m like you in that if I can get a good night’s sleep every third or fourth night, then I’m okay for a few days. The 100 mg gabapentin seems to be helping when I need it. I’m delighted that you’ve found something that works for you.

  • Larry Sawyer
    10 months ago

    Oh Carla, I think you need not worry about alcohol and things that make you sleepy. both you and i read the label for methotrexate. my experience was so negative that i rate a red wrist ban that says no mx every time I am hospitalized. I read all the labels Xeljanz really scares me, take it twice a day Peace Larry

  • cannonsplash
    10 months ago

    Story of my entire life, even before RA. I have struggled with sleep my whole life. Many of my family members do, including my mom and some siblings. I chalk it up to stress, inability to turn off my brain, FOMO (fear of missing out), very poor sleeping habits, and then now the pain of RA keeps me awake. I’ve tried them all – tylenol pm, Advil PM, Aleve PM, melatonin, melatonin gummies, termazapan, ambien, valium. nothing works consistently. I have the restless legs. I’ll be tired and go to bed and my legs won’t calm down and it’s very frightening. Gabapentin – my husband is on it while waiting for back surgery and he’s losing weight.

    We have delved a bit into the medical marijuana and I’m not a big fan, but it can make me sleep. The reality is that after enough sleep less nights, I will always have a very good nights sleep and I function well on 4 hours per night.

  • Carla Kienast author
    10 months ago

    Thanks! It seems like not sleeping and RA go together. Which only adds to the fatigue that often also goes along RA. I’m with you — the restless legs are awful. But we shouldn’t have to go through multiple sleepless nights to get a good night’s rest!

  • Lawrence 'rick' Phillips
    10 months ago

    Oh Carla I am so with you. I hate long nights. I have them almost every evening. Nothing much works and medical marijuana is illegal in IN as well. Of course so is CBD oil. I have a bottle of lotion with CBD in it. I told Sheryl if the police show up, blame the gardener. She said yes but that is me. Yes,, I know I said.

  • Carla Kienast author
    10 months ago

    🙂 I suppose Sheryl blames a lot of things on the gardener … Wishing you a good night’s rest!

  • Sneed
    10 months ago

    Well marijuana was reportedly used by Thomas Jefferson for sleep and it still works better than anything else I’ve ever tried long term. For me it’s legal but that hardly matters given its universal availability. Using a vape pen all but eliminates odor and can be kept on a nightstand and used as needed. Probably doesn’t work for everyone but it works for most.

  • scatcat
    9 months ago

    I live in TN, and work for a company that does random drug testing. I won’t try it while it’s illegal but I am interested in the vape option for whenever that changes.

  • cheeflo
    10 months ago

    It helps me sleep, too. I wasn’t going to mention it because I don’t have a medical marijuana card (I’m in Michigan where it’s legal). I plan to apply for one, but for now I obtain it otherwise.

  • Carla Kienast author
    10 months ago

    Well, yeah, in Texas where I live we do deal with it still being illegal. Medical marijuana just became available on a limited basis to juveniles with epilepsy. But I’m glad that you’ve found something that works for you! I’m still looking (yawn!).

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