Is there a connection between deep (unconscious) sleep for a prolonged time and an increase in Lupus-type symptoms on waking?

[Looby]

I have been wondering about this....because I have discovered that if I sleep longer than 5-6 hours, I wake up with a mind-numbing "brain fog" - unable to function for over an hour. It is as if the messages are not being transmitted from "the little grey cells" to my limbs, and even speech is a struggle.

However, if I don't sleep at all - or just have short "cat naps" - then I am able to function reasonably normally - apart from the pain and cracking of the joints. As I am now retired, I can make up some of this sleep deprivation during the daytime - so don't feel abnormally tired.

One of the frustrations of this condition is that we cannot plan anything for certain. I'm always having to cancel appointments/days out. However - if there is something really important in the early morning (like an air flight) I just keep awake the night before, and make up the time later.

The Physio doesn't approve of this - and suggests that I try to re-set my "body clock" by not sleeping during the day. However, I managed this for over 5 years when working night shifts - so what is the difference?

[Foss]

Hi Looby

This all sounds very familiar to me. The longer and deeper I sleep the worse I feel and it takes me a very long time to remember the day and what I did the day before. This leaves me feeling very low and the rest of the day is spent in a kind of blur which is I guess this awful fog that we all talk about.

Do you ever go to bed feeling completely whacked out and then just lie awake all night feeling restless and anxious?

thanks for your post I think you have got a point.

Foss

[gummy]

yes it is familiar 2 me as we,, iv been like that for a while now go 2 bed nackerd then once settled am wide awake and verry restless , when i do go over 2 sleep i am jumping in my sleep and waking my self up when i wake up in a morning i have a terrible headacke ,take me a while ,2 function and acke all over i take my tramodol as soon as i wake up hoping my head acke goes and have 2 stay in bed till i wake up and function a little more , and my speach is terrible i struggle most days talk i no wat i want to say but just wont come out and usualy wen does come out it comes out all wrong .....

[loopy-lou]

I agree too...I never manage to sleep more than three and a half hours at a time though...

[Hidden]

Yes me too, i find that the longer i sleep the worse i feel,so even on days where i don t have to get up i always do and set my alarm. its always difficult to explain to people how you feel and some days i can wake up without the brain fog but on other days i just can t get motivated even though i have had 8 hours sleep.

i also find that the more motivated i am during the day the better i sleep, and like yourself and many others im sure, you go to bed heady and exhausted but when lights go out you lay there wide awake tossing and turning its so frustrating.

as time has gone on i have got used to it but i do agree that it can get you down,i read everynight for a while and this helps me relax to sleep and i do try and keep active where i can which i find helps clear my head.

[krisdy]

Wow I had no idea that there wore other people with this problem. I thought it was just me! Like last night my husband went to bed and I did not sleep last night sometimes I get terriable restless leg syndrome does anyone get that and do you know anything that works love, Krisdy

[Gabby2]

Yes, same problem here but had not made the connection and thought it was just me.

Thanks for posting this as it was a wake-up call for me also.

Krisdy, I used to have the restless leg syndrome but that seems to have improved for me and not sure why--

[Coppernob]

All very interesting and sounding quite familiar. Though I haven't been diagnosed with Lupus ('only' APS and possibly Sjogrens). Have any of you discussed these symptoms with your rheumy? And if so what did they say?

[Looby]

Hi there fellow Lupies.....I've been off-site for almost a week. Really GOOD to know I'm not alone in the "wee small hours" and many of you have long nights too!

Honesty is what this Blog is all about - so have to admit that my appointment last week with Rheum Consultant triggered a sink into depression for me....I just felt that I was sitting next to an automatum, rather than a caring person! Because previous blood tests (3 months ago) came back relatively unchanged, she seemed to discount anything I've suffered in the past 3 months - and is content to give me the "blanket" diagnosis of Fibromyalgia.

Last time she referred me to a Physio, who did give me an indepth interview - but then suggested a 12 week programme for FM diagnosees, starting at the ludicrous time of 9.30 a.m. in the mornings! (I'd have to be fully awake by 7.30 a.m. to get there as it is 30 mins drive). The "common denominator" for most of us is that it is mega difficult to wake up and function in the mornings - so how many people would actually be able to DO the physio course?????

Lupus UK gave me the name of an Auto Immune Consultant in this area, but I've had a really difficult task trying to make an appointment to see him. He's on the same team as my present Rheum - so that makes it doubly difficult! I had hoped that he would look at all the symptoms holistically, instead of concentrating on the joints and rheumatic aspects. I'm pretty certain that the severe headaches and constant "burn-ups"/sweats have nothing to do with arthritis......I do have the "butterfly" rash (for most of the time, even when not hot), plus most of the symptoms you all describe - and they still say it is not Lupus...... I don't really CARE what they label me as, just that the Docs are willing to HELP!!!!

[BINNEY]

oh my gosh its so good to hear all of you talk about this i feel so relieved i could cry i was thinking it was just me and its upsetting to me because im always tired ........sigh

and it seems like know (friends and family )ever get it except my grandmother who also has SLE.

i work a 9-6 job and come home and be a good wife as well cook etccc.. well try to be all though my doc told me i should maybe get a part time job.

so of one off my off days a week i try to get that good 10 - 12 hour sleep we suppose to get everynight and i wake up and feel like i havent slept,rsed or nothing and i need to go back to sleepmy body physically feels better but my mind is groogy as hell.

and wen i take little power naps i get up alert altho by the end of the day if i have done to much physically my joints we will telling me.

but yea this sleep think has been driving me mad for years im glad im not alone

[BINNEY]

go to bed feeling completely whacked out and then just lie awake all night feeling restless and anxious?

as for the above question this happens alot wen im over tired and need the rest and sleep more than ever and i feel the anxity building and my heart feels like its racing but its not and i dont fall alseep for so long

[Looby]

Hi there Binney - I really sympathise with your plight....It must be so HARD to work 9 hours, do shopping, and then come home to housework.....I have difficulty just getting dressed some mornings! When I was younger, I solved part of the problem by working night shifts - but always the TATT syndrome...(Tired All The Time). It is linked to low thyroid also.....it seems to be a common condition for many folks with lupie-like symptoms.

Do you have a sympathetic boss? He/She may be willing to lessen your hours, or make them more flexible...... is there somewhere you can sit and relax when you need to?

I try to forget what is considered "normal" as a sleep pattern, which is why I'm typing this at 3 a..m. This is the first day in almost a week when I've been relatively pain-free. I've been for an X-ray on my neck and spine, as have cervical spondylosis as well (caused by a road accident in the 1990s). It is a chronic condition, but I'm learning to live with it, with the help of pain killers, and a helpful husband!

Like you - the anxiety "gremlins" are harder to fight off at night. I read,have a hot drink, or listen to music - anything to relax the mind and muscles. We have two gorgeous cats, and I so envy the way they completely "chill out" when napping!