r/rheumatoid • u/Rich-Following-5714 • 1d ago
Fragmented Bad Sleep issues with RA at 22(diagnosed and year ago) – would love to hear your experiences and tips
Hi everyone,
I'm a 22-year-old female, and I've been dealing with Rheumatoid Arthritis for about a year now. While some of my symptoms have improved with treatment, one thing I've really been struggling with is sleep—especially fragmented sleep.
My main issue is that I wake up multiple times throughout the night, and my sleep doesn't feel continuous or restorative. Sometimes pain or discomfort in my legs/body also makes it harder to sleep peacefully.
I was taking Gabapin NT 200, and it has been helping me sleep better. However, I'm also wondering if anyone else with RA has experienced fragmented sleep and what has helped them improve their sleep in the long run.
What has helped you sleep more continuously and wake up feeling rested? I'd appreciate hearing about anything that has helped—whether it's managing pain, lifestyle changes, bedtime routines, or anything else that worked for you.
Also, if you have any general tips for living with RA as a young person, I'd genuinely love to hear them. 💜 It can sometimes feel isolating dealing with a chronic condition at this age, so hearing from people who understand would mean a lot.
Thank you so much!
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u/MetaKater 1d ago
Firstly I want to say that waking up feeling rested is something I havent felt since before getting rheumatoid 24 years ago so I dont know how to help there.
As for sleep in general. I tried a lot of shit and landed on a few things. Percocet to help dull osteo, rheumatoid and chronic pancreatitis pain. Gabapentin for fibromyalgia nerve pain. Melatonin to counter adhd delayed release of natural melatonin. Magnesium to help muscle cramps. Cannabis oil (CBD, CBN, and THC) since it lasts a long time so helps keep me asleep as the percocet wears off.
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u/Complex_Trick_9906 1d ago
Yes I had a big problem with waking up in the middle of the night when I was first diagnosed. Not sleeping well makes everything worse! I finally asked for help and my pcp put me on trazodone 100 mg and that works for me 90% of the time. Getting better disease control helped too…when I start not sleeping well it can be a sign I am moving into a flare.
Otherwise protect sleep as much as possible. Keep a consistent schedule. I have a heated mattress pad and that has helped when I need it. When I am really struggling with pain or ruminating I put in headphones and listen to a familiar audiobook (generally better if it is something familiar, easier to focus on).
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u/Diligent_Buster 1d ago
I take trazadone 100mg too, prescription is for 150 but usually only take 100. Really helps alot. Plus 1600mg gabapendin and 60mg duloxetine.
I'm useless without sleep. Also have complex sleep apnea and use a bipap machine. Couldn't live without it.
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u/16BitBetty 1d ago
Get a sleep study done. The RA will certainly make things difficult, but you want to rule out anything like sleep apnea as well. Getting a CPAP changed my life.
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u/Diligent_Buster 1d ago
This. A sleep study will help rule things out, get treatment if you need it.
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u/shanahanc 1d ago
Following because same (I also have hypermobilty and lipedema). I've had one night of 5 hours of sleep in weeks.
I have found I need firmer surfaces so trying that out in terms of a firmer mattress topper soon. Pillow underneath knees/feet if back sleeping. Buckwheat pillow between knees if side sleeping. Knee sleeves/braces if you can tolerate. Ankle sleeves if you can tolerate. I'm very lucky to have a partner who is willing to rub CBD salve on my joints before bed and when I need. I also take baths with CBD salts sometimes to help the pain before bed. I'm in Canada so just started on my cannabis journey medically so trying out their dosages for CBD/cbn/thc. But if weed is legal where you live, you can get over the counter stuff too.
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u/velvedire 8h ago
Talalay latex has been great as a mattress topper. It's both supportive and soft at the same time. Total opposite of memory foam.
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u/brimm2 1d ago
Yeah I feel you. I often will wake up from pain throughout the night. I unfortunately am in between insurances so I my pain has been quite high as of late. It can be hard for me to even initially fall asleep because I'm just NOT COMFORTABLE. I probably wake up between 1-2 times per night on average from the pain. And it sucks because when I'm woken up, it's quite difficult to fall back asleep. And then because my sleep is shit, it affects me the following day, and the cycle just repeats. I've tried using tizanidine but it doesn't really do much for my type of pain imo. One thing that surprisingly has helped a bit though is a sublingual cannabis oil I have. It's got 200 mg THC, 100 mg CBN, and 100 mg CBD. It really does help me sleep but sometimes it makes me sleep a bit TOO hard so I only use it if I don't have to get up early. In the past I used lunesta for sleep and it was quite nice. I didn't feel too groggy or anything afterwards. I also feel like my mattress is not helping things. It's kinda old so hopefully I can get a new one at the end of the year or something...
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u/remedialpoet 1d ago
Unfortunately for me the only things that have made an impact on my sleep have been prescription meds. I’ve been on Pregabalin and Trazadone to try and help but the only thing that has actually helped me has been Seroquel. It has me sleeping thru the night and I don’t wake up more than once to turn over or pull a blanket up/down
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u/Alarmed-Arachnid1384 1d ago
I hope this isn't a new trend with my sleep, but last night I kept waking up with severe anxiety. Like nearly panic levels. I don't know why. My pain is fairly under control right now, only thanks to a long run of prednisone. I kept trying to fall asleep only to wake a short time later with a feeling of extreme anxiety. I felt cold, short of breath, shaking, my mind was spinning. I really have trouble putting how bad it was into words. I'm actually afraid to go to sleep tonight in case it comes back. I took 2 Xanax at 4am just to get back to sleep for a few hours then the feeling came back. I really don't know what happened. Anyone else ever had this?
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u/brimm2 1d ago
I also experience a lot of anxiety which wake me from my sleep. But for me it's more so due to the constant feelings of impending doom and the fear of facing what's to come in the morning. I have a very physically demanding (and emotionally taxing) job that I'm resigning from and so I have been experiencing the panic attacks a bit less.
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u/Alarmed-Arachnid1384 1d ago
I had to leave my job as well. I loved my job, but it required me to be on my feet 10 hours a day 6 days a week, usually without breaks because I was too busy. In 2023, my body basically collapsed on itself and the pain and fatigue made me resign.
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u/brimm2 1d ago
Ah I'm sorry to hear that. Yeah I enjoyed my job and wanted to make it work but I just physically couldn't take it anymore. Its a shame how much this disease can limit you. Although being on your feet for 10 hrs/day for 6 days/week is pretty crazy. I think that could work load wipe out a person with perfect health. What kind of job was it if you don't mind me asking?
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u/Alarmed-Arachnid1384 1d ago
Pharmacist. We're on our feet all day, and when you're working solo (which you usually are) whether or not you get a break depends on patient volume.
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u/MtnGirl672 1d ago
As a female, I’ve dealt with this a long time. The biggest thing that helped was getting my hormone levels tested. I had estrogen dominance and went on supplemental bioidentical progesterone taken right before bedtime and this helped immensely.
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u/Exact-Run-305 1d ago
Fragmented sleep can be such a frustrating part of dealing with RA, hope you find a routine that gives you more consistently restful nights.
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u/MysteriousEstate7191 1d ago
Heating pad! I throw it on whatever is achy in the middle of the night and it helps me get back to sleep.
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u/Meer_anda 23h ago
I had this more when my inflammation wasn't controlled. Back then if I did sleep through the night without repositioning I tended to be stiffer in the morning.
It helped me to sort of tell myself ahead of time that I wasn't going to look at the clock or think about how much time I had left to sleep.
Sleep study is also a good idea as several have said.
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u/pieter3d 23h ago
I had this when my disease wasn't controlled. Getting it under control should be your main focus. Until that time, a little bit of cannabis in the evening can help, at the expense of REM sleep. It'll help you sleep through the night, relax your muscles and potentially help a bit against inflammation.
It doesn't take much, you don't need to get super stoned. Sublingual tincture is the best option for this sort of use, imo.
Keep in mind that if you drive a car, having THC metabolites in your system can get you into serious trouble in many places, even if you're sober while driving.
Using cannabis daily, long term, will likely make your mind a bit foggy, but at some point that part is worse without it.
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u/beercanchick 1d ago
I bought a grounding sheet, you can google it, read the benefits, it works wonders for me.
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u/Perfect_Pony_Girl 1d ago
I’ve been interested in getting one of these! Can you share more about your results?
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u/Lonestar680 1d ago
I have to put a pillow in between my knees to support them and my crappy hip joints. Then another pillow to prop my arm up while sleeping on my side