Lupus still tired

[jensen_lynne]

When you have lupus and you sleep 9-10 hrs, are you still tired when you sleep 9-10 hrs?

[Lupiknits]

Yes, when I'm at my worst.

[Leave-me-alone]

9-10, I will be lucky. I can sleep 12hours and feel sleepy and go for another nap after breakfast. My record is 20hours.

[Ianrussell69]

I'm lucky to sleep 6/7 hr only time I sleep longer is when I take amitrptalin but makes me feel hung over and yes I still get tired in the afternoon

[PMRpro]

It is the fatigue of autoimmune (and other) disease - tiredness that is not relieved by rest or sleeping.

This is a link to a post of mine on another forum about fatigue:

healthunlocked.com/pmrgcauk......

It has 4 links in it - read them all.

[Minnskimoo in reply to PMRpro]

The article on the Devonshire NHS website entitled 'Pacing' is very useful.

[Treetop33 in reply to Minnskimoo]

I liked the one about spoons. That's really how it is.

[Minnskimoo in reply to Treetop33]

It really is.

Some of my work colleagues say how can I look like I do, and have been asked if it's simply stress that causes my symptoms and fatigue.

[Treetop33 in reply to Minnskimoo]

I suppose at least they talk about it. Many of my acquaintances look uncomfortable when I even so much as mention it.

But the constant resort to cod psychology (stress, hypersensitive etc etc) is quite annoying, isn't it? Have to try and remember I guess that people can't feel what you are feeling.

[Minnskimoo in reply to Treetop33]

Very true. 😏

[poodlegal]

Welcome to my world ! And dnt forget everyone saying ur lazy !!!!! Xx

[alija1001]

Yes I feel exhausted. Even when its hot I feel exhausted too.

[Minnskimoo in reply to alija1001]

Even more so when hot! 🙆🏼

[jensen_lynne in reply to Minnskimoo]

I feel the same way, the sunlight and the artificial light makes me sick and feel hot

[Tripitaka]

I'm just about to go for a nap.....it's all in the name of pacing.....

[Dan30cr]

Yes I was, my rheumatologist said this was due to non-restorative sleep. But a bit better now most days since my rheumatologist put me on amitriptyline, it definitely improved after about a month of being on it.

[fabwheelie]

Yes I have had to accept that I need a minimum of 10 hours sleep in order to function. I almost always sleep 10-12 hours, even then I still wake up feeling un-refreshed and if I allowed myself I could easily keep on sleeping (I could regularly do 15+ hours if I did not use an alarm clock).

However any more than 12 hours sleep does not make me feel any better, and I get depressed, frustrated and can also get more muscle pain (due to loss of muscle tone) if I "oversleep" more than my 10-12 hours that I "allow myself". I also can usually sleep "well" as in I can get to sleep and stay asleep (however I can't get off to sleep if I try an "early night" ... for me I therefore go to bed around 11-12pm ( any earlier and I'm just awake aware of my aches and pains, but going at this time my head hits the pillow and I fall asleep quickly)

This system works for me I have to force myself to get up (usually around 10-11am) and then I can usually function and do something with my afternoon or evening

I always have some level of fatigue, but I do feel that these days it is manageable... I'm not well enough to work but my sleep regime allows me to keep stable, have less flare ups, to function in running a home, doing some gentle exercise, and having as "normal" a life as I can. Gentle exercise helps me sleep better as does getting good pain management. However for me the fatigue is now part of my new "lupus normal". I've had Lupus 14 years and have tried all kinds of sleep regimes, naps etc to see what works best for me. I know some people find a nap in day helps, others who use sleep meds as they can not get to sleep easily or sleep well at night ... I think it's a case of finding out what works for you, but I think with Lupus we have to accept that we have fatigue and there is not a lot that can be done to stop it, instead it's a case of keeping it "controlled" so that we can be as stable as possible and "as well as we can be"