Sleep apnoea and insomnia

[catblue1865]

Does anyone else suffer from insomnia or sleep apnoea or are these not common conditions associated with lupus?

[CarolMcl]

Hi, my sleep pattern is shocking. I can fall asleep no problem at all but only for two hours. Last night I woke up at 12.15 and remained so until 06.00, thankfully I wasn't working today. I honestly can't remember the last time I had more than 2hrs sleep without wakening

[catblue1865 in reply to CarolMcl]

Thanks that was helpful, I seem to go through phases of not too bad sleep to terrible, last night I slept 1.30is till 3am, previous night only half an hour, like you I often wake every 2 hours or even 1. 5 or hourly, occasional night no sleep at all. I don't work except 3 hours in a charity shop on a sunday

[CarolMcl in reply to catblue1865]

It's horrible, just feel there's no reprieve between lack of sleep and aches & pains........the joys 😪

[catblue1865 in reply to CarolMcl]

It's nhi carolmcl, it's not a criticism but my g. P has referred to aches and pains, I feel this underestimating the moderate to severe pain I experience, is aches and pains a phrase that is used by rheumatologist? My sympathy with you

[CarolMcl in reply to catblue1865]

Yes, he does refer to it that way but not in a derisory manner. I'm lucky as have a very good rheumatologist after a shakey beginning with him. Maybe I play it down myself, I don't know.

[Kels1974]

I have sleep apnea.I don't have lupus but have been referred to rheumy for possible sjogrens.

[catblue1865 in reply to Kels1974]

I have severe sleep apnea but often can't get my mask on due to extreme light sensitivity of my face as mask causes it to sting if not allready doing so. A private rhemu did once query sjoyens but my ophthalmologist said I've just got dry eyes

[Lisalou19]

I can fall asleep but can’t stay asleep

I’ve been awake since 3am this morning.

Strangely I don’t feel exhausted but am tired of not sleeping

I’ve tried all sorts of medications.

Sleep is worse when flaring.

I’m thinking it maybe a noise or light sensitivity that jumps me out of my sleep.

It is extremely frustrating and just another symptom to add to this never ending list.

X

[svfarmer]

I hope this can be of help to people - I’ve had insomnia since I was 15 , I’m now 51 - there is nothing worse than insomnia especially when you have lupus as your permanently tired. About 10 years ago before I was diagnosed with Lupus and RA I had a shoulder injury and my GP put me on Amitriptyline for the pain anyway I discovered that if I took it after 3 hours of eating so I have my tea at 5pm then at 8pm I take Amitriptyline so by 10pm it makes me woozy so sends me to sleep but most importantly keeps me asleep so no waking every couple hours in the night - it has saved my sanity 😊

When I was diagnosed 3 years ago I went for a lupus seminar at Bath Rheumatology Hospital where there were specialists talking about Lupus and they said an awful lot of lupus patients have insomnia and that they can take Amitriptyline for sleep xx

[catblue1865 in reply to svfarmer]

Thanks, have been prescribed that in past for pain but didn't work for that, think might still have some so might try it

[svfarmer in reply to catblue1865]

Yes the trick is to take it on an empty stomach otherwise it dosnt work x

[Hidden]

I have overlap CTD but I think Sjögren’s is maybe the worst for sleep apnea and insomnia due to the combination of dryness (eyes, mouth, choking cough), pain, lymphatic issues (for me at least) and chronic GI problems. I haven’t slept a night through without “help” since I was a child and I’m 56 now. I was tested for sleep apnea a few years ago but it didn’t show. I suspect I have it though as I wake gasping for air most nights - am getting lung function testing in January.

My old uncle referred to my “aches and pains” in his Christmas card - he definitely meant it in a derisory manner! I think my son told him I have RA (I don’t!)

[catblue1865 in reply to Hidden]

What's gi and ctd?

[Hidden in reply to catblue1865]

Sorry sore fingers! GI =Gastrointestinal

CTD =connective tissue disease

[catblue1865 in reply to Hidden]

Yes sorry have seen what ctd stands for before just forgot

[Crazy_Cat_Woman]

Hello catblue - I have major sleep issues which I put down to my lupus. I will be awake for a couple of days and then sleep for about 12 hours. This has been going on for several years now. On my awake days I feel exhausted but just can’t sleep. Sometimes I will have micro naps where I nod off for a few seconds and then wake up again. It’s so strange!!

I spoke to the GP about it a few years ago and she put me on amitryptaline. It didn’t work for me back then but maybe I just give it enough time to get to work. I stopped taking it after a couple of months.

Perhaps you could discuss your sleep problems with your GP and Rheumy?

[catblue1865 in reply to Crazy_Cat_Woman]

thanks, haven't got a rheumy, saw one once but he diagnosed fibromyalgia and anthralgia then discharged me

[Crazy_Cat_Woman in reply to catblue1865]

Oh, I’m so sorry to hear that.

My first Rheumy was useless so I asked for a second opinion. It was my second Rheumy team who found the positive ANA result which eventually led to my lupus dx. I hope you get to the bottom of your health issues soon x

[catblue1865 in reply to Crazy_Cat_Woman]

Thanks

[svfarmer in reply to Crazy_Cat_Woman]

The trick is to take them on an empty stomach otherwise they don’t work x

[Crazy_Cat_Woman in reply to svfarmer]

That's probably where I went wrong then!

[NeuronerdDoaty]

Depends on the pain levels but changing sleep patterns are normal as humans. Don’t believe the advertising from drug companies or mattress companies.

In the 19th century they used to sleep in the afternoon and have suppers at 11pm. In some cultures they still have the siesta so 4-6 hours is normal at night.

Some of us just didn’t tend well to our invincible 20-year-old bodies and at 55 we hurt.

[Lupiknits]

I had the habit since my 20’s of having no problems getting to sleep, but waking up at 3am, when somehow everything in the world and my life seemed at its worst. I’d usually read, then fall back to sleep a couple of hours later which is not fun if you have to get up at 6! Just occasionally getting up, having a glass of milk and a piece of bread and butter did the trick.

My psychiatrist has prescribed zolpidem for over 20 yrs now, and has no intention of changing that as he knows lack of sleep can trigger my bipolar disorder. I do, however, wake up on painful nights. These days if that happens I listen to the World Service on the radio or listen to an audiobook. A well read novel can be, for me, a distraction technique.

If the pain is really bad and all that fails, it’s a bummer, so I feel for you.

[catblue1865 in reply to Lupiknits]

I too have bi polar, because it was diagnosed before I had any lupus symptoms o feel it gets in the way of me being treated seriously by drs. The first thing a rheumatologist I saw said was "you've got bi polar haven't you". The woman at the pain clinic put my pain down to my bi polar. Recently I saw a dermatologist who was a lot better I have photos to prove my extreme light sensitivity on face though. I only my a. N. A tested midly positive, as others negative told it is very unlikely to be lupus just wish they would get to the bottom of it

[Lupiknits in reply to catblue1865]

Fortunately I haven’t had this problem: it’s pretty much the first thing I always say, emphasising it’s well controlled. I also have a fiercely protective psychiatrist who knows me well enough to give them an earful if necessary!

Mind you, from the beginning I attributed everything to stress and was puzzled about the first Rheumy referral. It came as a shock to me that a thing was more than a little wrong physically. I know better now.

So, in spite of the crazy lady stuff being a bummer, it has meant I haven’t had the “it’s all in your head” dismissal medics often hand out.

I’m sorry you’re having this problem.

[catblue1865 in reply to Lupiknits]

Thank you, I take it you do have a diagnos of lupus or something similar though

[Lupiknits in reply to catblue1865]

I have MCTD. I’m sorry if I seemed smug or upset you x

[catblue1865 in reply to Lupiknits]

No not at all, I'm just finding it difficult to get diagnosed with anything I guess it's got a lot to do with the blood results not being significant. At least they did do test for lupus I'm sure it would have been different if definitely positive. Sorry if I seemed nosy

[Lupiknits in reply to catblue1865]

You’re not nosy at all. I feared I might have struck the wrong tone on my post.

I think many of us have had a long frustrating journey to get an answer to their problems.

[Lupusfighter19]

I've been dealing with insomnia for yrs. It got worse with Flares. I'm up every hr. I pee like crazy at night. Some days I feel like a zombie with body aches and pains. They gave me Seroquel. Can't take melatonin because it activates immune system for flares. I'm sleepy!

[catblue1865 in reply to Lupusfighter19]

I've got 14 tablets only of zopiclone from my g. Ps partner. G. P refuses to prescribe any sleeping tablets as says addictive. Bit scared to use them though as says don't take if you have sleep apnoea, did take one last night once I could get the sleep app mask on seemed to help. Saving 4 for medical appoints in Jan and fed next year. Also got 15 tramadol for short term only, can't take with zopicline.

[Roanna in reply to catblue1865]

Catblur1865, I wish you the best. I too struggle with sleep but my issues with sleep only started when kidneys got invoked 5 years after diagnosis with lupus. I could sleep fine till then even right after work for a spell then at night. The prednisone changed it all for me, then the years of poor sleep started. Tried zopiclone, sublinox, anytriptaline, gravel, THC oil legally and now immune to most of them. Going in today to GP to try & get the stronger ones. My memory has been getting pretty bad from lack of sleep and this scares me as it continues. I wish you luck and do try the pills. I took only 1/2 imovaine pill and this was great for many years. All the best with your diagnosis. Mine took 3 years till the flare showed up enough for diagnosis but this was in my teens 37 years ago. Believe it or not my first Rhumy told me I would never use my hands again. I had a 20 year dental career after that, but can’t say it was pain free. One day at a time and make good of the good days is how I roll.

[Roanna in reply to Lupusfighter19]

Lupus fighter, just curious if you have kidney involvement with your diagnosis with the peeing all night? I do when my kidneys flare.

[Lupusfighter19 in reply to Roanna]

They keep telling me my kidneys are fine but I do wonder. I'm constantly in bathroom

[Roanna in reply to Lupusfighter19]

Lupusfighter19 I’m not sure about the tests they did for your kidneys but mine definitely show something every time. Even when in remission I still show protein, but there are also a few types of kidney issues I’m not sure of. I know even being sick with a cold can change my results. Good luck

[catblue1865 in reply to Roanna]

I'm not diagnosed with lupus, blood tests always either neg or with a. N. A mildly positive only, it's just that I've got so many of the symptoms, more as time goes on, I often do have to get up to go to the toilet at night but put this down to the fact that I get very thirsty so drink a lot of water. I don't have kidney involvement, when had last lupus test the urine test showed I had too much protein in my urine but on repeat it was normal

[Roanna in reply to catblue1865]

That’s how my kidneys started, I got tones of bubbles so if you get that again, get it checked out right away. I know there are a lot of autoimmune illnesses out there that are very close. I never looked into the blood work for things because I never remember much of what I read anymore as hard as I try. I have to re read everything so I just don’t try if it doesn’t pertain to me at that time. Have a great weekend . I did sleep last night so that is a start.

[catblue1865 in reply to Roanna]

Sorry its late, what do you mean by bubbles? I slept well last night too but in pain tonight. Sleep well

[Roanna in reply to catblue1865]

When I get a kidney flare, bad one, it looks like dish soap in the water with the amount of the bubbles I get. And the bubbles stay in shape for a while. Sometimes I can’t even see a clear spot. But this only goes on for a few days before it goes away.

[catblue1865 in reply to Roanna]

I get that as well and very dark urine maybe see my g. P or his partner about it in new year, he seems to have a high disbelief factor sometimes and I do go there rather alot

[Roanna in reply to catblue1865]

catblue1865 I get that also on occasion, but can’t tell you if it is during a flare or an infection. I get same response, almost like you bring it up, they look disbelieving at you, offer urine tests or reassurance, then you leave, not feeling really satisfied with the appointment. Basic tests show very little so nothing is done. Then your back the next month with the same symptoms feeling like your bothering them yet again. I think most of us have gotten those same responses. I feel like they believe it is all related to your illness and other possibilities are off the table. Which is why I keep going back hoping for a believable outcome. I hope you will get your answers soon. Happy holidays to you and your family. Feel free to msg me anytime.

[Treetop33]

I'm a terrible sleeper and have been for 10 years - combination of Lupus, menopause, adrenal insufficiency and post-concussive syndrome. A good high-dose magnesium helped, as does iron, low-dose naltrexone and melatonin (yes, I know they say it makes Lupus flare but I haven't found that - I use liquid melatonin in small doses throughout the night). Eating something with protein in it if I wake in the early hours helps too. I still wake up about 2-3 times but almost always get back to sleep.

I've tended to find there is no one silver bullet. Absolutely critical is de-stressing and having nothing on one's mind at night or being at peace. That's a really tough one. Good luck.

[catblue1865 in reply to Treetop33]

Thanks for the tips

[Roanna in reply to Treetop33]

Curious on what you call high dose magnesium? I take 500 mg, are you taking higher than that and how safe is that because I was told not to take any higher but can’t remember why...

[Roanna]

Hey all, so GP visit went ok. We both agree my hand is healing from the surgery and no infection where red is and other pustule looking thing is a stitch that needs to be removed and will be next visit with surgeon. We agree I’m in a flare from the added stress of cast pressure and physio. I don’t take anything for lupus right now only blood pressure pills for kidneys so I am going on a prednisone tapper. Can’t wait, 😩😳. I asked him for sleeping pills then and when I mentioned anitriptaline as a possibility he was all for it. I told him it didn’t work in past so he said another one I wasn’t familiar with. Auro - mirtazapine is what I got and thinking it was a stronger sleeping pill made me happy when I left his office. At pharmacy I’m told it’s an antidepressant that helps with sleep. 😩 not what I wanted. I get the worst withdrawals from these type of pills and I wasn’t looking for something I have to stay on because I do believe it’s only the pain that is keeping me up. I will try them because I have them now. Who knows they may be what will work. Wish me luck.