Too knackered to sleep?

General
1

Following on from 'Too pooped to pop', how many of us are too tired to sleep? Or can't sleep even when we're just tired enough? Or can't sleep at all at times? Or lose consciousness in some way or other but 'sleep' seems like too grand a word for the experience?

I've always felt somewhat ashamed of sleeping badly. Probably because it can be related to quite minor sources of stress and anxiety that barely trouble me during the day.

I'm pretty sure that unsatisfactory sleep is caused by PsA, i.e. that the disease process causes it, quite apart from pain and discomfort keeping us awake. And I also think that years of insomnia probably helped trigger my PsA. Good disease control has helped quite a lot I think, but then many things in my life have changed so I can't be sure.

I work with someone who claims that every single night of her life she puts her head on the pillow and then knows nothing other than dreams until her alarm goes off! That's unimaginable to me and I just don't know of anyone else with PsA who sleeps like that. Or perhaps you do?

2

I used to sleep really well. In fact it was my escape from and opportunity to process whatever stresses I had in my life, so I was like your colleague, head on pillow and a solid nights sleep. BUT (and you knew this was coming) PsA has messed my sleep up. I struggle to get to sleep, stay asleep and get back to sleep after waking. I will concede that the menopause is also a likely contributor. One or both, I mourn the loss of my ability to sleep like I used to. Not only do I hate the constant tiredness, I hate that it affects my ability to 'process' other things going on in my life and I'm sure it also reduces my ability to heal and repair my body. The closest I can get to a good nights sleep is taking amitriptylene before bed ..... but it is still not as good as natural sleep.

Yes, something else the thief that is PsA has stolen from me!

3

Sybil,

in regard to this person: "I work with someone who claims that every single night of her life she puts her head on the pillow and then knows nothing other than dreams until her alarm goes off!" I hate her. I hate her VERY much.

Sleeplessness and interrupted sleep are very big issues about which we should feel comfortable talking seriously with our medical professionals. PSA pain and discomfort can be a primary factor in insomnia yet sleep aids and pain killers arent the only ways to resolve the issue. And a decent doctor should want to play detective and find out what other triggers and what other solutions should be considered.

I had terrible sleep issues until I got on medication for neuropathy in my feet. It took several months to figure out what was keeping me up, waking me up, etc. But the medication causes a little drowsiness and so now helps me drift off to sleep quite easily now. And because it helps decrease the shooting nerve pain in my feet and low legs,I don't tend to wake up much anymore. I still have bad nights despite the meds and inexplicable early morning 3am wide awake days, but I no longer fear going to bed.

Before the neuropathy meds I would practice guided meditation, particularly a body scan. This helped to identify all the trouble spots, acknowledge the pain and move on. Typically the process of focusing so diligently on the pain would make it more bearable and I would generally fall asleep in the middle of the exercise. Some nights, though, I couldn't lay still enough to even start.

Thanks for engaging a conversation on sleeping. It is, after all, a cornerstone of wellness!

4

Interesting that you used to sleep well. I still think of myself as an insomniac 'type' of person and maybe I am. It's actually quite a silently and insidiously disabling thing in a way, it affects everything. You are right, sleep is healing. All the more reason why we need it. But what is the best way to achieve that? Disease control? Ancillary measures like amitriptylene? Or something else / combination of things?

I checked out 'S' in the index of the Gladman & Chandran PsA books .... no mention of sleep.


Jules G said:

I used to sleep really well. In fact it was my escape from and opportunity to process whatever stresses I had in my life, so I was like your colleague, head on pillow and a solid nights sleep. BUT (and you knew this was coming) PsA has messed my sleep up. I struggle to get to sleep, stay asleep and get back to sleep after waking. I will concede that the menopause is also a likely contributor. One or both, I mourn the loss of my ability to sleep like I used to. Not only do I hate the constant tiredness, I hate that it affects my ability to 'process' other things going on in my life and I'm sure it also reduces my ability to heal and repair my body. The closest I can get to a good nights sleep is taking amitriptylene before bed ..... but it is still not as good as natural sleep.

Yes, something else the thief that is PsA has stolen from me!

5

I used to sleep well when I was a teenager. I also went to school full time and had two jobs. I had pain but I was soooo tired that I would pass out. I remember not sleeping well as a kid though, leg and knee pain. I used to wrap blankets around my legs to fall asleep. Like makeshift heating pads. Now, I still don't sleep well. I do take amitriptylene and some IBU before bed. 3 weeks on and one off. The off week is horrible. I only sleep a few hours each night. I normally resort to taking Ambien that week. The pain meds keep me awake. I also have RLS. I take a OTC med called Leg Cramps. It has quinine in it, helps too. Or Gin and Tonics.

Sleep is a constant battle. Too hot, too cold, pain, uncomfortable, anxiety, etc. It's ssssllllooowwwlllyyy getting better.

Hope you find some sleep soon.

6

I like your proactive approach! I always do. If by shooting nerve pain you mean electric shock sensations, sometimes every few seconds through the night, I do get that on occasions and would sell my granny after 5 minutes, maybe 10, if that would make it stop. I'm glad you got that sorted!

It's crazy fearing going to bed ... but that is what happens. There are so many things that interfere with sleep with PsA. But is there something underlying all the more obvious reasons as well?

in regard to this person: "I work with someone who claims that every single night of her life she puts her head on the pillow and then knows nothing other than dreams until her alarm goes off!" I hate her. I hate her VERY much.

Sleeplessness and interrupted sleep are very big issues about which we should feel comfortable talking seriously with our medical professionals. PSA pain and discomfort can be a primary factor in insomnia yet sleep aids and pain killers arent the only ways to resolve the issue. And a decent doctor should want to play detective and find out what other triggers and what other solutions should be considered.

I had terrible sleep issues until I got on medication for neuropathy in my feet. It took several months to figure out what was keeping me up, waking me up, etc. But the medication causes a little drowsiness and so now helps me drift off to sleep quite easily now. And because it helps decrease the shooting nerve pain in my feet and low legs,I don't tend to wake up much anymore. I still have bad nights despite the meds and inexplicable early morning 3am wide awake days, but I no longer fear going to bed.

Before the neuropathy meds I would practice guided meditation, particularly a body scan. This helped to identify all the trouble spots, acknowledge the pain and move on. Typically the process of focusing so diligently on the pain would make it more bearable and I would generally fall asleep in the middle of the exercise. Some nights, though, I couldn't lay still enough to even start.

Thanks for engaging a conversation on sleeping. It is, after all, a cornerstone of wellness!

7

I'm slowly getting better too. Glad to hear you are as well. I can't imagine ever taking sleep for granted though, it's probably always going to be a bit of a vexed issue.

The med regime you have suggests you've tackled your sleep issues in a characteristically organised fashion. I'm impressed!



amielynn38 said:

I used to sleep well when I was a teenager. I also went to school full time and had two jobs. I had pain but I was soooo tired that I would pass out. I remember not sleeping well as a kid though, leg and knee pain. I used to wrap blankets around my legs to fall asleep. Like makeshift heating pads. Now, I still don't sleep well. I do take amitriptylene and some IBU before bed. 3 weeks on and one off. The off week is horrible. I only sleep a few hours each night. I normally resort to taking Ambien that week. The pain meds keep me awake. I also have RLS. I take a OTC med called Leg Cramps. It has quinine in it, helps too. Or Gin and Tonics.

Sleep is a constant battle. Too hot, too cold, pain, uncomfortable, anxiety, etc. It's ssssllllooowwwlllyyy getting better.

Hope you find some sleep soon.

8

I'm just amazed there are such people out there. I try to hate her but she's very funny, I'll try harder.

Is there anyone who belongs to this site who sleeps like a baby given half a chance? Go on, 'fess up! We won't hate you too much.

janeatiu said:

Sybil,

in regard to this person: "I work with someone who claims that every single night of her life she puts her head on the pillow and then knows nothing other than dreams until her alarm goes off!" I hate her. I hate her VERY much.

9

Ok I’ll bite. I do.

But before you put me on your hate list, let me tell you the rest of my sleep history when I come back later.

10

I know! I'm holding back from actually detailing my sleep history too! It may be a symptom but for me it's been more of a lifestyle - though not a 'lifestyle choice'! It's way to messy to relate.

One thing I will say is that insomnia is one big reason why I've chosen not to do a regular job anymore. With PsA and lack of sleep I just collapsed in a heap eventually and I'll never know where one ends and the other starts. Several years of teaching plus management on an average of 4 hours sleep a night while getting progressively more unwell has made me work shy. I'd go out to work again if I had to .... and I'm lucky to be able to even contemplate that .... but I think it's best avoided in the circumstances. I do work now, but in ways that give me more wriggle room - no anxiety about the boss realising they're employing a knackered wreck.

Don't hate you! And in fact I sleep very well sometimes now that I've modified my life beyond all recognition.

Seenie said:

Ok I'll bite. I do.

But before you put me on your hate list, let me tell you the rest of my sleep history when I come back later.
11

Before I was diagnosed, I had a lot of unexplained aches and pains. Well, my GP explained them as menopause, needing more exercise etc., you’ve probably heard those explanations too. I was also depressed, which was helped some by antidepressants. My sleep was terrible. I had two night time states: in the one, I’d be awake, agitated and desperately hungry, and in the other, I’d shut my eyes and go unconscious. That was how I described the leaden dreamless state that I slipped into. Telling my GP this resulted in nothing more than dismissive sleep hygiene advice which I already knew. Nighttime was a nightmare for me. I started each day feeling totally exhausted, lying there in what felt like a shell of paralysis, needing stern self-talk to move my body into an upright position. I felt like a bag of dirt and hurt. Staggering to the bathroom felt like the end of a marathon (not that this girl has ever done a marathon, LOL). Showering and shampooing my hair was a herculean effort, and I don’t want to think of the water I wasted just standing there, stunned, under the spray of the shower. I’d force myself to get going, and I’d loosen up after a few hours, but I always felt chronically tired and foggy.

It didn’t matter what I did, I only got one of those two states, and every morning was torture time. Once I was diagnosed and on aggressive therapy, though, things started to turn around. I’ve often said that the relief from depression, brain fog and fatigue that I got when I went on Enbrel was miraculous. I guess I never talked much about my deepest darkest nighttime problems. But those are by and large gone as well: I sleep (and dream) and awaken naturally most days after eight or nine hours. I feel refreshed and ready to go in the morning. OK, not really. I’m lying. “Ready to go” involves two mugs of coffee, but mornings are good. In the late evening, I feel sleepy. I am sometimes a bit slow to go to sleep: do you think that might have anything to do with having a smart phone on my bedside table? (By the way, if you catch me on here in the wee hours, please open a chat window and tell me off. LOL)

Sleep is so essential to good health, and yet so little has been written about it, as Sybil pointed out. There are a some studies that confirm that people with inflammatory arthritis sleep poorly. This study suggests that poor sleep and pain are a two way street:
http://www.ncbi.nlm.nih.gov/pubmed/19935069
Some researchers suggest that sleep quality improves with the initiation of anti-TNF therapy (biologics), but by and large, there isn’t much in the way of research into the mix of sleep, psoriatic arthritis, and treatment. It’s clear, though, that besides all the other types of pain and discomfort that comes with PsA, sleep problems are part of the picture as well.

I’m always grateful for the many kinds of relief that aggressive therapy has given me, but sound and restorative sleep is a real blessing.

12

I do not sleep well, which is why I've lately been reading and not responding here - my brain is too fried from not sleeping to come up with a coherent response to most posts ... or other people have already said what I would say. That, and my kids keep holding my computer hostage and my hands can't do the typing on the tiny phone thing. ;)

But sleep - I sleep for 5 - 30 minutes at a time after spending hours trying to fall asleep. I think part of it is the disease, part of it is the excruciating pain I'm experiencing (rheumy is battling insurance to get lumbar MRI ... I've had brain, c-spine and thoracic, but even though we know I've had a bulging disc since I was 17 and have partially fused SI joints, insurance is being impossible). If I lay too long in one position, I wake up with sharp pains.

Lack of sleep has led to so many health and functional issues for me. I'm so glad I have doctors on my side who are trying to figure out how to get me quality sleep!

13

I think the territory we're in with this is similar to many systemic PsA symptoms. In a 24/7 world, with new pressures on people popping up all the time, having trouble sleeping is now commonplace. Those who sleep well despite stressful lives often strike me as particularly well-balanced individuals. Therefore insomnia is now 'normal' and, furthermore, it's probably our own fault for not handling stress the way some can.

That's how I used to think, anyway. But since being diagnosed with PsA I've reviewed some of my assumptions about myself and a few of the struggles I've had for donkey's years. You mention the old menopause chestnut. I used to talk to other women going through the menopause ... they'd complain of tiredness, I could see they were tired. They'd say their 'thermostat' was out of whack, so was mine. They weren't sleeping well, nor was I. They'd be irritable ... LOL, was I irritable! But watching them, their capacity for recovery seemed better than mine somehow. On the whole, I couldn't pick up on the same degree of quiet desperation. Occasionally, I dared to think that maybe, just maybe, I was in more of a mess than the average menopausal woman by quite a long chalk.

When I found out that I had PsA I didn't blame everything on it, but I was surer than ever that it had at the very least exacerbated some problems. And gradually I came to realise that the treatment I'd thought of as primarily aimed at helping & protecting my joints seemed to be improving quite a few less tangible things .... like quality of sleep, for example.

I find it sad that you never talked much about your deepest, darkest nighttime problems. I never did either. It takes a lot of energy to keep schtum about something so fundamental for years and years. Not that I really knew that at the time.

I can relate to the coffee addiction big time!


Seenie said:

Before I was diagnosed, I had a lot of unexplained aches and pains. Well, my GP explained them as menopause, needing more exercise etc., you've probably heard those explanations too. I was also depressed, which was helped some by antidepressants. My sleep was terrible. I had two night time states: in the one, I'd be awake, agitated and desperately hungry, and in the other, I'd shut my eyes and go unconscious. That was how I described the leaden dreamless state that I slipped into. Telling my GP this resulted in nothing more than dismissive sleep hygiene advice which I already knew. Nighttime was a nightmare for me. I started each day feeling totally exhausted, lying there in what felt like a shell of paralysis, needing stern self-talk to move my body into an upright position. I felt like a bag of dirt and hurt. Staggering to the bathroom felt like the end of a marathon (not that this girl has ever done a marathon, LOL). Showering and shampooing my hair was a herculean effort, and I don't want to think of the water I wasted just standing there, stunned, under the spray of the shower. I'd force myself to get going, and I'd loosen up after a few hours, but I always felt chronically tired and foggy.

It didn't matter what I did, I only got one of those two states, and every morning was torture time. Once I was diagnosed and on aggressive therapy, though, things started to turn around. I've often said that the relief from depression, brain fog and fatigue that I got when I went on Enbrel was miraculous. I guess I never talked much about my deepest darkest nighttime problems. But those are by and large gone as well: I sleep (and dream) and awaken naturally most days after eight or nine hours. I feel refreshed and ready to go in the morning. OK, not really. I'm lying. "Ready to go" involves two mugs of coffee, but mornings are good. In the late evening, I feel sleepy. I am sometimes a bit slow to go to sleep: do you think that might have anything to do with having a smart phone on my bedside table? (By the way, if you catch me on here in the wee hours, please open a chat window and tell me off. LOL)

Sleep is so essential to good health, and yet so little has been written about it, as Sybil pointed out. There are a some studies that confirm that people with inflammatory arthritis sleep poorly. This study suggests that poor sleep and pain are a two way street:
http://www.ncbi.nlm.nih.gov/pubmed/19935069
Some researchers suggest that sleep quality improves with the initiation of anti-TNF therapy (biologics), but by and large, there isn't much in the way of research into the mix of sleep, psoriatic arthritis, and treatment. It's clear, though, that besides all the other types of pain and discomfort that comes with PsA, sleep problems are part of the picture as well.

I'm always grateful for the many kinds of relief that aggressive therapy has given me, but sound and restorative sleep is a real blessing.
14

I’m sorry, Nym, that you are going through this. And I think you are right: sleep issues compound other problems. I’m glad that your docs are not dismissing your sleep problems. I hope that they get you sorted out soon.

You bring up an important point: moderators go through hard times too. At the moment I am well, but, like everyone here, my fortunes can change anytime. And then I’ll be much less visible online as well. Meanwhile, I hope you’re feeling better soon.

15

I am glad too, that you have doctors who are taking your sleep issues seriously. And so sorry you're suffering like this.

I tend to think that any incoherent posts from you might still make a lot more sense than some of those I make when well-rested.

nym said:

I do not sleep well, which is why I've lately been reading and not responding here - my brain is too fried from not sleeping to come up with a coherent response to most posts ... or other people have already said what I would say. That, and my kids keep holding my computer hostage and my hands can't do the typing on the tiny phone thing. ;)

But sleep - I sleep for 5 - 30 minutes at a time after spending hours trying to fall asleep. I think part of it is the disease, part of it is the excruciating pain I'm experiencing (rheumy is battling insurance to get lumbar MRI ... I've had brain, c-spine and thoracic, but even though we know I've had a bulging disc since I was 17 and have partially fused SI joints, insurance is being impossible). If I lay too long in one position, I wake up with sharp pains.

Lack of sleep has led to so many health and functional issues for me. I'm so glad I have doctors on my side who are trying to figure out how to get me quality sleep!

16

Thanks, Seenie and Sybil. :)

I post about not being able to sleep and slept THREE straight hours last night. It felt miraculous. I still don't feel rested, but I don't feel like I'm completely dragging and fuddlebrained.

17

Maybe you should post more often about not sleeping. Who knows what could happen! LOL

18

Seenie said it before I could! Keep posting nym, we'll aim for 8 hours plus! There again, are you saying my post is boring? Oh well, if that's what it takes .... :)

nym said:

Thanks, Seenie and Sybil. :)

I post about not being able to sleep and slept THREE straight hours last night. It felt miraculous. I still don't feel rested, but I don't feel like I'm completely dragging and fuddlebrained.

19

LOL... you? boring? Never!!!

I think it was just sheer exhaustion.

And about the OP ... I do know someone with PsA who sleeps well and all through the night, but she takes a muscle relaxer and a pain pill that basically knock her out.