Night Time Pain?: Does anyone here with RA have more... - NRAS

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Night Time Pain?

Radiogirl profile image
42 Replies

Does anyone here with RA have more pain at night than daytime? I have lots of pain during the day and spend more time than I like to admit lying down during the day. But, when I finally flatten all the way out, hoping to go to sleep it's like some of my pain areas go into overdrive. My feet especially kill me and my pain medicine doesn't do anything for them. Ice helps, heat not so much. My shoulders, elbows and wrists also hurt more, too. I do get pain relief of my spine and neck when lying flat, however.

Anyway, I have found this to be odd. Can anyone relate?

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Radiogirl profile image
Radiogirl
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42 Replies
Kyriew profile image
Kyriew

I have more in the evening than during the day. For me its when I sit down and stop moving around. My ankles swell and my feet often feel like they are on fire. Got to love this RA.

Radiogirl profile image
Radiogirl in reply toKyriew

Yes, fire is a great way to describe my feet as well.

Have you ever had and steriod injections in your feet? The balls of my feet, my arches hurt the most. Ten years ago I saw a podiatrist for my pain, long before my RA diagnosis, and he injected my feet on the top, around the base of the third toe. It seemed to help at the time. I am hoping injections could help now. I'll ask next appointment.

Thanks for your reply. Hugs.

Kyriew profile image
Kyriew in reply toRadiogirl

Ive not had steroid injections but a course of steroids when I was particularly bad was amazing. My whole body felt like brand new. I went to see a Podiatrist a few weeks ago and he says my arches have fallen which doesnt help so have got insoles but cant wear them as due to swelling they dont fit in my shoes and I wear wide fit already. Dont know about you but find the RA consultants ect dont really focus on feet its more on hands and fingers. Too be far they hurt and swell to but I can cope with that by not using them. How long have you been diagnosed for Im fairly new coming up 2 years xxx

Radiogirl profile image
Radiogirl in reply toKyriew

How frustrating that you can't wear the insoles. I have found that purchasing a size or two larger than what I would normally wear helps me. I also get Sketchers brand shoes with the big, spongey soles. I can't go barefoot for a second, not even to run to the bathroom in the middle of the night.

I can't understand why doctors don't seem to recognize how severely RA affects our poor feet.

Hope we're both able to get some relief. :)

I was only diagnosed a year ago, so I guess we both are somewhat newbies. :)

Neverending63 profile image
Neverending63 in reply toRadiogirl

Agree totally about sketchers I have found them a god send to wear due to the spongy sole. In fact it is all I wear now.

helixhelix profile image
helixhelix in reply toKyriew

I wear men's shoes as they are always wider than women's....

in reply tohelixhelix

I usually get Crocs because they are so wide from side to side and top to bottom..

helixhelix profile image
helixhelix in reply to

My physio says she hates crocs as don't give the right support - and it's true I can't wear them all day without feeling it. But I still like them so just make sure I don't wear them when going to see her.

in reply tohelixhelix

Ha ha - Sneaky =).. Yeah - They also tend to shift out from under your feet. But when I had the growth (called an exostosis) develop on the top of my foot from the big toe turning, the lump was so large and painful that I could only get Crocs on.

Jobslot profile image
Jobslot in reply toKyriew

Yes most diffidenley and like you cannot understand why and also my medication doesn’t do anything so each morning waking up wondering how I will get through the day .

helixhelix profile image
helixhelix

Yes, and it can wake me several/many times in the night. I don't know whether some of it is that during the day I distract myself, and it's only when I get I to bed that I realise which bits are hurting and how much?

I have toes injected and it was great for several months.

Nettac profile image
Nettac

I think it's possibly because at night we become more aware of how our body feels. During the day I do have pain, but somehow at night it is always amplified!

I wake up constantly. Quite often because I'm pouring with sweat too!

Radiogirl profile image
Radiogirl in reply toNettac

Oh, how I hate the sweat. On and off covers/blankets. My poor husband endures my need for keeping the room cold at night. He's a saint! (I have a cute meme I'll try to post about this subject. 😊

Downtime profile image
Downtime

I was speaking to a family member who is a doctor (psychiatrist actually but she does have patients with RA) and she said that at night the body is healing and the inflammatory process is part of that so in RA sufferers where the system goes into overdrive, it can mean pain in the early hours. I think she’s right as I seem to get very achy then, and often it’s gone when I wake up in morning, that’s if I get back to sleep at all, ha ha.

Radiogirl profile image
Radiogirl in reply toDowntime

My body clock has totally reset, partially because my hubby works overnight but mostly because of the pain. It seems like between 4am-6am I can finally fall asleep and then, like you, the pain gets better. Or maybe we just get so worn by it by then. I try so hard to turn off all electronic devices too, to no avail. Wish tossing and turning counted as aerobic exercise and burned more calories. 😉

Matilda_1922 profile image
Matilda_1922

I feel more pain at night

Radiogirl profile image
Radiogirl in reply toMatilda_1922

We have the fellowship of suffering. 😔

Gnarli profile image
Gnarli in reply toMatilda_1922

Yuk. Poor you x

nomoreheels profile image
nomoreheels

It's my OA that I feel more in an evening. I was really struggling with my back & neck at one time, ages getting off to sleep, more often than not getting up & doing what we're told not to do & going on my iPad. Lucky if I got a couple of hours unbroken sleep but of course it wasn't restorative sleep so I mentioned it to my GP & she prescribed amitriptyline which was increased over several weeks to a therapeutic leve. I then I'd had back pain again on waking, which confuses me because I more often than not wake up on my back but I'm sleeping through the pain. Anyhow I've recently been having 3 weekly appointments to increase my pregabalin which have helped me be able to sit up & get out of bed instead of rolling out of. Not quite there yet but I reckon another 25mg should.

I've said all this & you may not even have OA but if you do maybe it helps to know you're not alone.

Radiogirl profile image
Radiogirl in reply tonomoreheels

I do have both RA and OA, my rheumy mentioned Fibromyalgia, too, recently. I have huge back, neck and shoulder issues. I roll from one side to another all night, but wake up on my back, too. It's never made sense to me. I'll have to Google pregabalin as I've not heard of that med before. Is it similar to Melatonin? I found out the hard way that Melatonin carries the warning for people with autoimmune disorders not to take Melatonin. My pain levels shot through the roof, but thankfully returned to my "normal" pain levels within about 24 hours.

😁

popsmith1874 profile image
popsmith1874

Ivan relate to the pain at night, 1minute the duvets on then off then my feet go stone cold and it's on again and soon it goes until I eventually I fall asleep

Radiogirl profile image
Radiogirl in reply topopsmith1874

Yes!!!! I'll put socks on, then quickly overheat, rip them off and repeat. Arrgh!

Ruth12345 profile image
Ruth12345

Pain seems constant day & night.

Oh my gosh I thought I was the only one with the bed clothes on off etc at night. Its worse than the menopause which took about 13 ish years in my 40s and 50s to get through then I had 2 years and got this. Its dreadfull. Have changed douvet, pillows and now bed to try and help that and night pain.

The podiatrist is making me insoles and told me sketches and similar were the worst shoes to wear for RA as they make the feet work too hard. He said to wear more rigid soles and lace ups. I tried and ... no chance ... back to sketches. Insoles not here yet so ill try again when they arrive.

Nsmith13 profile image
Nsmith13

Yes but it's the cold sweats in a morning I hate getting out of bed cos of pain and hair all damp it's nasty it would be heaven to step into a warm wind tunnel an dry off !!!!!!

Nettac profile image
Nettac

I wonder what causes these awful sweats we all seem to suffer from. Sometimes I wake up and I'm drenched, and have to change sheets and pj's.

Radiogirl profile image
Radiogirl in reply toNettac

It seems like I read somewhere that taking Prednisone or other kinds of steroids can cause the night sweats. I take it at bedtime, not sure if it would do the same thing if taken during the day. I'm also not sure if RA in general causes night sweats without taking steroids or another DMARDS or biologics. I know I sure hate it, too!!

janmary profile image
janmary

Me too - hands especially worse at night , they get swollen and knuckles go red and are painful to touch. I probably need carpal tunnel surgery too, but cons not sure it would help as my wrists would still swell and my joints inflame And I join you in the duvet on/off/on/off exercise . Such fun!

Nsmith13 profile image
Nsmith13

Bought a spare quilt 2 day in Sainsbury's on offer bounce back filling wish I could lol 🤣 !!!!

Liggle profile image
Liggle

I so relate to you I cry at night with the terrible pain in my feet, legs well whole body can’t understand how this happens, I hurt in the day but pain killers are a little help then but not at night, I have spent £4000 on a bed to no avail, I can’t take anymore drug I take thirty a day for R/A, Breast cancer , thyroid cancer , high blood pressure, diabetes, I could go on but I will not bore you , sorry I cannot help but I understand your pain

Radiogirl profile image
Radiogirl in reply toLiggle

I'm so sorry, Liggle. Hugs to you. xxx

Nsmith13 profile image
Nsmith13

Yes lots of hugs it's a nasty decease but we are all here for you take care x

BoneyC profile image
BoneyC

I take codeine at night, makes me sleepy.

Radiogirl profile image
Radiogirl in reply toBoneyC

I've been taking Hydrocodone 10/325mg for the past year. It doesn't help much. I also get itchy from it. Wish it would help me sleep. 😟

BoneyC profile image
BoneyC in reply toRadiogirl

I don't take any paracetamol or paracetamol combination, it's just not strong enough. I prefer neat 15mg codeine, although I am prescribed 2 x 15mg, I only take one, its enough to knock me out.

Debbie_Go profile image
Debbie_Go

I thought I suffer this alone. My doctor gave me steroid injection that took another month to really kick in but I still feel pain but not as much.

Radiogirl profile image
Radiogirl in reply toDebbie_Go

It's amazing how alone we can feel with our symptoms until we find a group like this. You are not alone, Debbie. Hope your meds start helping you soon. Hugs!

Quee profile image
Quee

I been diagnosed with RA an Fiby along with sciatic nerve damage. I always in pain. RA doctor put me on Hydroxy 200 mg 4 months ago. 2 month after i started i woke up couldn't open left eye. When i opened a little pain eas so bad Husband had to take me to ER. They gave me MRI an all these test an said i had scratched cornea an bacteria infection that end up traveling to left eye. I went to eye specialist 4 times. Stopped taking RA meds. He said for at least 3 months. Till they csn figure out whats next. I take pain meds, naproxen an other meds. The eye drop burns my left eye so i just stopped taking it. That Hydroxy was to suppose to slow down RA so now i worried about whats going to slow it up because they say its in my immune system an that mines is really aggressive. Do you know any thing about this disease?

Radiogirl profile image
Radiogirl in reply toQuee

I'm so sorry. That sounds so painful. I was only diagnosed a year ago so I am learning about this awful disease, too. From reading here, I understand that finding the right mix of meds can take awhile to accomplish. Hang in there. Lord willing, we'll all get to that remission stage soon.

xxx

Habbeshaw profile image
Habbeshaw

My pain is also worse at night. All joints hurt. I spend most of the night trying to find a comfortable spot.

Radiogirl profile image
Radiogirl in reply toHabbeshaw

Yes, I do, too. 😣

xxx

Habbeshaw profile image
Habbeshaw

Have you found out anything to help?

Radiogirl profile image
Radiogirl in reply toHabbeshaw

I saw my rheumy the other day and he ran some additional tests to see why we haven't been able to get my RD in better control. Hopefully, once we've gained more control then the pain will lessen. I'm also scheduled to have more spinal injections on this coming Tuesday. I have getting fed up taking my Hydrocodone. It doesn't really seem to help and I think I am becoming more allergic to it. I've always experienced face itching when I take Hydrocodone, but could tolerate it if I kept at least 8 hours or so of space between doses. Now, even if I take it only at night I immediately get itchy. It's so bad that I have been avoiding it more and more....which isn't helpful in addressing my pain. It's so frustrating.

Have you found anything that helps you yet? xxxx

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