Rheumatoid Arthritis Sleep Issues
If you have RA, sleep is a big deal
Johns Hopkins’ Rheumatoid Arthritis treatment information page says Rheumatoid Arthritis (RA) patients “often need over ten hours of sleep a night, or eight hours a night and a two-hour nap during the day.” (Gee, do you think so?) Seriously, there’s plenty of evidence that RA fatigue and RA pain is less severe with more sleep.
Discussions between RA’ers often include references to lack of quality or quantity of sleep. However, RA sleep is understudied according to Johns Hopkins. They praise a large survey (over 8,000 RA patients) which found that 25-42% of RA patients attribute sleep disturbance to the RA disease process. A significant result of this research is that anti-tumor necrosis factor (TNF) inhibitors like Enbrel may not improve RA sleep problems. The National Data Bank for Rheumatic Diseases says the data show that RA sleep disturbance “is linked to pain, mood, and disease activity.”
In 2009, the Journal of Sleep and Sleep Disorders Research (article #1007) reported similar findings. Their study of 133 women with RA found “71% of the subjects had poor sleep quality.” About half of the variance in sleep quality was accounted for by pain, depression, and poor adherence to RA medication.
Some other causes of RA sleep problems
In addition to the causes already mentioned, I found 2 significant sleep problems which can affect those with Rheumatoid Arthritis. The first is cardiovascular disease (CVD). As we’ve discussed previously, heart disease is responsible for a large portion of deaths with Rheumatoid Arthritis. A 2009 study reported in the Journal of Rheumatology suggests that CVD may be to blame for some RA sleep problems. Their theory is that RA leads to CVD which contributes to sleep apnea.
Other things which increase the risk of sleep apnea include “reduction of the size of the upper airway by temporomandibular joint destruction, brainstem compression due to rheumatoid arthritis affecting the cervical spine, sleep fragmentation, and drug effects.” This is a case study of one patient. However, it looks at ten other studies and raises excellent questions about the causes of sleep apnea and disturbances related to RA.
Don’t tell those detractors who insist that RA cannot affect the spine, but the British Journal of Rheumatology says that “Sleep apnea syndrome (SAS) is a rarely documented, but possibly lethal, complication of the instability of the cervical spine in Rheumatoid Arthritis.” The inflammatory process of RA causes instability of the cervical spine which leads to spinal cord compression or myelopathy. They present details of five patients, saying symptoms are often inconspicuous and not always mentioned spontaneously. “We hope clinicians will become more aware of the existence and the different etiologies of SAS, thus improving early recognition and appropriate treatment. Adequate treatment has proven to increase survival in peripheral SAS and seems to be successful in doing so in central SAS. ”
Rheumatoid Arthritis and sleep requires more research
There are an array of concerns with RA and sleep. Some cannot fall asleep or wake up too early. Some do not sleep deeply enough. Some are awakened by pain, stress related to ability to work or finances or disability issues. Apnea is much studied, so RA and apnea are being examined. I hope these other RA-sleep issues will eventually get some attention, too.
Does RA affect your sleep? What can we do? Tomorrow: Tackling Rheumatoid Arthritis Sleep Problems
Note: I noticed a current study of sleep problems in RA being conducted at UCLA. For information about participating, follow this link. They are examining the activity of cytokines and whether or not TNF blockers have an effect on RA sleep problems.
- Tips for sleeping with RA: Tackling Rheumatoid Arthritis Sleep Problems
- A courageous story of a woman with RA in her spine: Rheumatoid Arthritis and Basilar Invagination
- Those dreamy RA medicine ads: Baloney About Rheumatoid Arthritis
- Sad, but true: Can Rheumatoid Arthritis Affect the Spine?
50 thoughts on “Rheumatoid Arthritis Sleep Issues”
thanks fo the terrific info
First time commenter…been lurking for a while now. I can agree with the sleep deprivation issues. I do sleep most nights now that I am seeing some relief from my IA/RA symptoms (taking Plaquenil and Pednisone) however like before the meds I do still wake up occasionally due to pain though not as much as I was before the meds :-)I have noticed that if I am tired I hurt more and am unable to get/stay comfortable enough to sleep thus causing me to hurt even more till I can “beak the cycle” either through extra tylenol hot showers amd muscle relaxers (I also have mild MS yuck)or a combo there of. DO you have any suggestions on how to combat this, I am on SSDI so abiility to work isnt the issue here but the ability to go about my daily living activities is.
It sounds like you are already doing some good things to promote sleep. Tomorrow, I’ll kick off a list where we can all put what’s most helpful to us.
Thanks so much for the links to information on RA of the spine. Trying to get a straight answer from any of the doctors is almost impossible! Sleep…what is that?
Do doctors really not think RA can affect the spine? According to my rheumy that’s where mine started long before I was diagnosed. I’ve had back problems since I was a teenager and when I flare, my SI joints and back are the first places that bother me.
Anyway, about the sleep issues, thank you for this info. The Johns Hopkins information explained a lot to me. I’ve been wondering for weeks why I seem to feel better the first couple days of the work week and rapidly go downhill. Well, I am able to get more sleep and take naps on the weekends. Can’t do that during the week, so it’s no wonder that I’m barely able to function by the time Friday rolls around. Guess I’ll have to get DVR so I can start going to bed earlier to get that 10 hours of sleep. 😀
Yes, I’ve encountered a couple of docs & patients who are adamant about no RA in the spine. Evidence is against them as you point out.
Just my opinion, as your friend… Your workweek slide is possibly due to your schedule. My own experience & stories people send me all seem to indicate that active RA just feels more mild the more you rest. Generally speaking only: The more you do, the worse it is. We do best w/ alternating activity & rest. I know – – – life doesn’t accomodate that very often.
I’m very fortunate that most days I can rest/work/rest/work. On days that I can’t, Oh MY!! Terrible fatigue at the end of the day and my body hurts so bad – It’s almost like the RA is saying “I’ll get you yet!”. On days that I just have to go, go, go – at the end of the day I have to take pain meds & muscle relaxers to even get comfortable enough to sleep. The good news is, usually after I stay off my feet for 8 – 10 hours I feel ready to go the next day. However, every night I still have to take a muscle relaxer and most night I take Tylenol PM. I have to have lots of rest but, the pain def interferes. Thanks for the info!
Hi, yes my Dr says it does NOT effect the spine. He just told me that the other day. I feel like alot of these Drs have their heads in a textbook and never pull it out! Some of us are not textbook examples. For instance my sed rate is always low, but my inflammation is always active as seen by my swollen joints. Thanks for the sleep post. I struggle to get enough sleep. And when I do take a nap I feel like I just waste the day away and do not accomplish anything.
I have been telling my Rheumy Docs for years that the fatigue is worse than the pain. For pain I can take pills, for fatigue, nothing works!
Love your screen name…
The books do not agree about the spine or lots of things. So, it’s not just books that are fooling certain docs. To see all I’ve tagged with “spine” on this site, click on the Tags List at page top & find the spine entry. That will take you to the posts. The whole idea of a “typical” RA seems to be fiction at this point, although I was only just realizing it when I wrote that post. Good docs will treat patients, not some idea in their mind of how RA ought to look.
Thanks for the great info Kelly. I havent slept proper for probably ten years. I just gave up about 3 months ago and got a sleeping pill. I only take them about every 3rd or 4th night as I dont want to become dependent on them. But boy even that one night a week of a good sleep has really made a big difference to me, not only my RA but mentally as well. I also could not live without my heating pad!
Thanks for addressing such an important issue as sleep. It has been a major problem for me at times. Is there any research or recommendations on the best mattress? Thanks for what you do.
Kay, I did post some links about mattresses on the latest post. And my personal opinion is this: mattresses with metal coils have no place with RA, unless it’s mild RA or confined to a few small joints. Also, firm support can be “disguised” as a giant pillow by a good feather bed or foam or artificial subsitute placed over top of mattress. I think it is a huge priority and the best thing I’ve done for my RA besides taking medicine.
Thanks for the great article. I too struggle with sleep. I take a long bath before bed and read a book. But I usually also take xanax and either darvocet or vicodin (depending on the pain level). Even then sleep elusive. I often just lie there and listen to my ipod.
Sleep is SO important. It can make a huge difference on my pain tolerance and mood. Glad they’re studying it closer. I take a muscle relaxant at bedtime which helps.
I bought a latex bed in Dec/09 and really did help with my pressure points. My old bed was of really good quality but it felt like I was sleeping on pavement and shards of glass. They all have the 30 night sleep offer so I would try one if you can. Mine is natural latex and they say it will last 20 years??? So far I do like it.
Me too. I totally agree. It gets turned regularly to prolong its life. Plus the featherbed I layed overtop make it really like a princess & the pea bed. I am so grateful for one place on earth I don’t hurt as much – that bed.
Getting extra sleep definitely helps me. I don’t always get it, but when I do, I can tell the difference. Best way for me to get the extra rest is to work a nap into the day. Thanks again for all your great info.
Yes, and we think that rest / or nap will take our time away, but not so if it makes our time more productive since we can function a bit better. I need to take this advice more…
This is very interesting and informative. I have been denigrated since I was a teenager about how much I sleep…8-10 hours a night and sometimes a 2-3 hour nap during the day. If I don’t get that much sleep, I have to make it up on the weekends. Work is getting much harder for me, especially since I am so wiped out when I get home that all of my errands and such get pushed to the weekends so I don’t even have the makeup time anymore. When I talk to people about this and other issues, I have been getting the eye roll. I am reluctant to try therapy, but there is a big part of me that says that I have accomplished the work of three women in my 30 odd years, why are people thinking that I am faking or exaggerating my symptoms? I’m not crazy, am I? Thanks again for all you do…
No eye rolls here, Robin. You are right. 😮
I recently bought one of those 3″ memory foam toppers to go on top of my mattress and oh what a difference, then on top of that I put a really thick mattress pad. My bed is really comfortable now and no pressure points like before.
I also have a question about the spine. I have lower back disc problems and before I was diagnosed with RA, the spine Dr. I went to said you have some arthritis in your spine, which he was surprised to see (had an MRI on spine). After I was diagnosed with RA I mentioned to my Rheumy and asked if that was RA as well. The response was no that it was probably not related. Didn’t make sense to me and still doesn’t it.
Of course there’s no way I can know since I’m not a doc & can’t see your mri. I can tell you that degenerated discs & OA in spine are both more common w/RA. Also, RA can attack there on it’s own. A good doc can tell the difference by mri IF it is showing up already. However, it can be just like our hands or elbows and show up on the scans long after the pain begins. I think if you were very specific in describing the symptoms, maybe a doc could distinguish between, but they hear so many complaints of pain, I think it just comes out like we are talking like Charlie Brown’s parents: “Brah fwa bwa gaa ba…”
That is exactly what it is, degenerating discs along with some arthritis in spine. I just thought it was weird that they say it is not related and I think it is. You are right, half the time it is Charlie Brown’s parents they hear, (that gave me such a much needed laugh, thank you). The docs sometimes just brush so much off like it’s nothing and that bugs me. Hope you are feeling better.
Hey Kay, Nikki, I have a natural latex memory foam bed, too, and I’m so glad have it. I got it last year before I was diagnosed and it’s turned out to be a godsend…
Wow,this is why I love this place :). I know that I have commonality with people here. Last month, my cervical vertebra have been snapping and feeling like they are going to lock into place and when it happens I’m afraid to move for a brief moment not knowing what happened/will happen. I know I’ve had flares in my neck and upper back but they never happen when I am going to my dr. He was trying to convince me last week when I was there that it is very rare(um, yeh, so??) and he believes that my neck pain is a direct result of the deep depression I fell into at the beginning of January. It has been triggering migrains that I wake up with. Trying to get enough sleep stinks sometimes. Although I have to say I love my electric blanket and chamomile tea :). For nights that I’m not tired I add valarian. I don’t want to have to add any more pills but there are times that sleeping the whole night thru just doesn’t happen. Whether it is my hips or my shoulders acting up, it is all the same. I can get about 4hrs of good sleep with the rest being tossing and turning, repositioning to get comfortable. Next on the list of luxuries after buying my house–memory foam bed!! It is so good to know it isn’t completely my imagination!!!
I was pretty aggravated when I read this. If you are depressed for real, I’m sorry & I hope it passes soon. But if you have RA in your cervical spine & it causes migraines, then that’s another thing. If it continues, I hope you will mention it again to your doctors. Waking up with the pain makes it sound like it could have to do with the neck. Have you tried a different pillow since this started?
It just frustrates me how often docs blame RA pain on “depression.” It happened to a friend of mine recently & she is not at all depressed…
Hi Kelly & Nikki, I have added an additional pillow to help raise my head. I’ve been feeling a little better as far as the depression goes because of the medication. I told my rheumy I would give the medication some time to work but I really don’t think it will make a difference. Normally he is pretty good about not minimizing the way I’m feeling but he did this time and and really irritated me. I figure if it is still happening when I go back for my Orencia this month that I will have him do xrays. I have a friend that has degenerative bone disease in her neck and had to have a plate and cadaver bone to fuse her cervical vertebra. I had to see the complications she suffered thru & it really scares me to think about having to maybe have surgery on my neck. Thanks for the positive thoughts, it helps alot!!
I have a husband who snores and a six year old who rarely sleeps through the night, so lack of sleep is nothing new (Dx’d Sept09). But I stuggle with the difference between being fatigued and sleepy. If I have a nap during the day (which is rare anyway) I am less likely to sleep at night. I am physically exhausted most of the time and generally wake up unchanged – but I just can’t sleep.
I agree with the idea that it gets worse during the week, with work and organising the kids. I had a really good few weeks over the holidays and hoped it was the meds but realised that it was probably just the fact that I was resting alot more than usual. Returning to work and doing some more physical activities recently have bought back the pain and fatigue with avengence. I need to learn to stop before the pain and stiffness start otherwise I will pay for it later, but its hard to change old habits.
Thanks for creating such a great community, it is awesome to have somewhere to find information and “meet” other RAers.
If there are any other Kiwis following the Warrior I would be keen to hear from you…
Jo, I’ve seen some Kiwi’s on the Facebook page. & another I see often on Twitter. I’ll mention you if I see them there.
There is no shame or anything wrong with asking your Dr for a good sleeping pill to sleep at night due to having RA,it was one of the first thing that my rheumy gave me, he was so right, it made all the difference in my sleep, as it has been proven the stress and fatigue are the number one reason why we with RA dont sleep and there is no shame in needing to take a pill to get a good night’s rest, ask your Dr
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Kelly, I was thinking about your post all day – Mainly b/c I have a stuffy/runny nose all the time – bad allergies & Sjogren’s keeps my salivary glands all crazy. I’ve noticed that the combination of the two have really interrupted my sleep pattern. I didn’t take my Tylenol PM so I’m up in the middle of the night with pain…Silly me! Now it’s too close to time for the kids to get up so I can’t take anything!
I have shoulder and neck problems and I agree with Kelly about the pillow. I have about 10 different ones for different nights, but the one that helps me the most is Buckwheat pillows. I bought 3 and made 6 out of them. Some are small and light all the way to one that is heavy and bigger. I tend to use a different one every night. I sometimes can not lift the big one because of my hands but I will get my husband to place it for me. These have made a HUGE difference for me. I had trouble finding them in stores anymore, but I did find them on line. They come really stuffed so I just bought pillow liners and made extra pillows. I also have some from Pacific Down and they also have helped on some of the nights. I also have wool pillows and they are used as well. Again you can change the density of these to your comfort level. These are also really nice for the nights when you have the low grade fevers. Hope this helps.
I am wondering if the higher incidences of heart disease may be tangentially related to lack of exercise. We can’t exercise like normal people do. I have been in a flare since Thanksgiving and I am no longer able to exercise regularly. Even a simple walk has been difficult. I try to exercise during mild flares because I feel and sleep better. On days I don’t exercise both my pain and sleep problems are much worse.
Hey Kelly, just catching up here after a rough 4 days of work. I have no problem going to sleep, but I wake up several times a night and often will take up to an hour to get back to sleep. I work 12 hour days so by the time I drive home, eat, shower and unwind for 30 minutes to an hour, I typically have 8 – 8 1/2 hours to sleep. Sounds good but most nights I am actually sleeping 6 1/2 of those before going back to another 12 hour shift. By the time my 4th workday is over, I’m completely worn down and hurting. I have tried many different things without any positive results. Tylenol PM does help me sleep better, but I feel like I’m hungover for half of the next day at work. Not good for working around the machinery that I do.
sitting here awake at 0300…and being a registered respiratory therapist, this article is important. The study of sleeping disorders is part of my field. Since sleep apnea is literally stopping breathing when asleep. This is a pertinant subject. I do know in my case I have been an insomniac for 20 years due to pain. Ambien gives me 4 hours. I haven’t slept a full 8 hours since about 1990. Not a good thing, and I want to learn new sleep hygiene techniques to help me relax….and no that term does not mean being clean in bed…LOL!
This has been one of the most difficult things to deal with! Before ra I RARELY ever had trouble falling asleep or staying asleep. My family often joked that not even an earthquake would wake me up out of a deep sleep. And even though I am a totally devoted mom, my husband was always more likely to wake up with one of the kids if they got up in the middle of the night. I was always just a really heavy sleeper.
Well, all that changed as I was developing RA. During the few years that i was very sick before my diagnosis I spent many, many nights awake & in tears. Pain, frustration, fear, exhaustion along with not knowing what was wrong. Lack of sleep in the beginning along with a very hectic life did me no favors. None at all.
Now that my RA is so active & progressing it’s harder & harder for me to sleep. But unlike the old me I have learned that pushing myself to the point of exhaustion is only going to lead to an emotional breakdown, rather than a physical breakthrough. I know that I feel worse, my pain is worse, and I have less patience with everything if I don’t get enough sleep. When I am asleep its the only time that I don’t feel pain.
By the time I lay down at night to sleep sometimes I hurt so much that I start to cry. It’s hard to fall asleep when you can’t get your body into a comfortable position. What might be comfortable for the shoulder may not be comfortable for the wrist. What might be comfortable for the wrist might not be comfortable for the hand, ect ect. If I do manage to get my joints comfortable it only lasts for a short time, before they start to ache and I have to re position everything.
I’d have to say going to bed is one of the most painful things I do in a day. I used to love naps. But I can’t nap anymore. It’s to painful. I used to love to sleep late on the weekends but once I wake up now I can’t ever fall back asleep. The pain is to intense.
My husband had knee surgery last week. He is also experiencing some intense pain and has been up every couple of hours every night for the past week. Kind of like having a newborn in the house, that kind of schedule. He has needed help at night so I haven’t been getting much sleep. I know this is really affecting my RA. Every day I feel like I have become weaker & weaker. My pain has increased to never before levels. My morning stiffness was lasting 4 to 5 hours. After this no one will ever be able to tell me that sleep doesn’t affect RA disease activity.
I hope someday I will find a way to take naps again. I feel like I need one! 🙂
I have always craved lots of sleep even before being diagnosed with RA. But now I need even more. Being in pain a lot makes you tired but it seems to be more than that. I really need to rest. I guess the fact that I am a retirement age litigating attorney who still works and has very busy days is part of the story. But I feel a “before and after RA” difference.
I purchased a second hand electric hospital bed. Then I place my 8 inch, dual density memory foam mattress on it. Now I can raise or lower my legs or head as needed and have my mattress to prevent pain from pressure points. Everyone in the house wants my bed! It at least let me get some decent sleep when I finally get tired enough to lay down.
I found that a heated water bed works well.
Less pressure points and warm.
Hi- many years ago a massage therapist told me not to use anything for a pillow more than the size of a small rolled towel for all my RA cervical issues. For the past 10 years I’ve just used a small cylindrical latex pillow under my neck. It lets my neck and head rest as nature intended them to. Also – my best friend? My Watmart soft extra long heating pad- I sleep on it 365 nights a year – it really makes sleep possible for me ( along with Flexeril). Good luck to you all!!
great ideas Cyndi.
Hi. Iam 26yrs old but have had R.A since iwas 16. Last yr it finally went in remission and ihad no pain nor flare up’s for a whole year. Last month it started back but it is worst than before. My body has always locked up on me (all joints are inflamed) and ihad to get rushed to emergency but now everyday another joint or the same ones hurt. I have had no relief. Last week my throat hurted badly and unexpectedly and icouldnt talk. It hurted bad to swallow. Now iknow that the RA was the cause. My jaw locks up alot now and it is worst than before. Excruciating pain. But my shoulders are TERRIBLE. It feels like my shoulder pops out of place and icant move it. I mean rubbing alcohol, muscle cream and the heating pad barely works. Tylenol 4, Vicodens, nothing works. Im scared to get on RA treatment meds because of the terrible side effects and iwant to have kids someday. I do work 8 1/2hrs mon-fri and I do not get any sleep. I need at least 8 or more for me to wake up with no pain and back to normal. How can imanage this. Yesterday was my birthday and icouldnt do anything due to the horrible pain.
I have psoriatic arthritis and I mine is more like RA over PA. I have been one of the few to have avoided finger joint issues but my back, hip, and knees have taken the biggest hit. From spondylitis and collapsed disks in my neck to knee that now need replaced. I have fought sleep issues for years. Mainly from pain but sometimes from medication. My doctor just requested a sleep study which I am refusing to take. I have recorded multiple hours of sleep and never do I stop breathing and only snore lightly. Only medications may increase snoring at times.
My rheumatologist sent me for a sleep study. I am not a scorer but am tired all the time and put it down to my RA and my OA that has caused permanent nerve damage to one foot. The sleep study showed that although I don’t snore, I do stop breathing or have hypopneic episodes roughly 26 times an hour. I can’tell say that wearing a mask to bed is helping me sleep, but by the numbers at any rate it seems better for my heart. You gave to laugh- bedtime means splints on wrists, facial mask, sometimes a breathe right strip and a dental mouthpiece for TMJ. Just what one needs to sleep well. (Not)
I am a first time commenter, though I have been reading this blog since my diagnosis in 2008. It keeps me sane. It is only recently (x4 months) that my sleep is disrupted. Every morning at 0300 I wake up bright eyed and bushy tailed. No increase of pain, and I feel like I could get up and start moving. However, by 0500 I am still awake, developing my usual morning pain, and am fatigued by the start of my work day at 0800 from both lack of sleep and RA. So… this is a whole new experience. Any one else doing this?
I miss sleep.
Well, I have had to accept that I do now have RH as well as Ankylosing Spondylitis. I thought that was impossible. I am so discouraged, tired, and in pain so much. I am also getting too old to fight these things. I am diabetic now, I am almost certain that is from autoimmune disease as well, as I had one bout of pancreatitis before I ever developed diabetes, and I have never drank in my life. Fatty liver disease has been diagnosed that they now suspect is actually autoimmune hepatitis. I’m tired all the time. I am so glad to find this site, as this week I have had to note that the knuckles on both my index fingers are hot, swollen, and stinging like fire, so I guess those elevated RHfactor lab results are not just a fluke… Again, I am so grateful to find your site. My husband is retired military, and when he was in Ranger school he developed a mantra that helped him to make it through all the challenges of his career in the military and now the State Department.
“If the man in front of me can do it, so can I.’ I am making you the woman in front of me. Thank you for what you do.
Bless your heart Debra. I get so much strength also from your stories and seeing others overcome so much just to keep going. I come from a military family & I also believe that has helped me “tough it out” every day. Would you believe I’m actually seeing the liver dr today too. My autoimmune hepatitis started about 14 months ago and was also misdiagnosed at first. Do you have any idea what led to yours?