I just love the part of this stupid sickness that won’t let me sleep. I have barely had any sleep in days and now that I could sleep in tomorrow I can’t fall asleep. Does the medicines ever help? I feel like I will never feel good enough to be happy when I do wake up.
Do you also have periods when all you'd like to do is sleep?
Chamomile tea with honey helps me most of the time, unless there's something else acting up. I used to get more frustrated thinking the next day I had something "important" to do at work. Hang in there!
I too have difficulty sleeping certain days, then others I sleep like a baby. I don't take any OTC medicines, I am on enough pills. But, my doctor thinks I may have sleep apnea. However, I think it is just part of a flare.
I haven't slept thru the night in years except for maybe once or twice a year. Some nights I only wake up twice, and other nights I wake up every half hour. Then it is hard to fall back asleep. Part of it is a mind that is racing, always thinking, always worrying about something. What helps me fall asleep is listening to realaxation CDs or meditation tapes. Then if I wake up and can't sleep I get a cup of warm milk and get on the internet for about a half hour and then go back to bed. Good luck.
I take a sleep aid when I need it. Sleep is SOOOO important for good health. Talk to your doctor or find a natural remedy that works for your body. I take RX temazepam (sp?). It helps me sleep without the groggy feeling in the morning. I feel so much better on the nights I take it. And I can take it at 2am and still wake up at 8 without the "hangover" feeling.
I do hope you get some good sleep soon.
HI Heather, when i can' sleep i just lay there and stare at the ceiling , and meditate (deep thoughts only about me and Thanking Jehovah for being with me through this ) And then it's like am at PEACE , and am waking up well RESTED and ready to start over !! hope that this helps you in some way ... Beverly L.
I understand fully....not only do I have problems sleeping at night but during the day I fall asleep at the drop of a hat for maybe 5 minutes at a time. This sleep pattern doesn't allow for much rest. I don't have any answers for you just hoping you get more rest.
I wish I could fall asleep during the day. I never was a napper.
Please say a prayer for me. I had to put my beloved dog to sleep today. He was the best dog I ever had in 57 years. I am grieving and my heart is broken. I will miss him terribly. He was always with me especially when I was in pain. I couldn't bear to see him suffer, so I had to let him go to sleep. I've been crying since yesterday.
Hi , sorry to hear that you had to do that .. I know how you feel , my family dog ran away last chistmas eve ue to she was old , and was having old age problems ( we had her for a very long time 20years ), and we just culd not bare the thought to have to put her to sleep , so she ran away - which the vet said is common when dogs know that the family gan't do it . But as time has past we do think of her often , but not as much,we are not going to get another dog to replace her, which after 20 years it's to time to get to raise another dg rom a puppy , but that's life . Well hope that you feel better soon and remember the fun that you had with him and SMILE ... Beverly L.
Sobby802 said:
I wish I could fall asleep during the day. I never was a napper.
Please say a prayer for me. I had to put my beloved dog to sleep today. He was the best dog I ever had in 57 years. I am grieving and my heart is broken. I will miss him terribly. He was always with me especially when I was in pain. I couldn't bear to see him suffer, so I had to let him go to sleep. I've been crying since yesterday.
Wow, 20 years to have a pet is a long time. I'm not ready for another dog yet. I need time. Thanks for writing,
Hi Heather, I am so sorry you are going through the not sleeping phase of the illness. I have had times like that, its so frustrating. I wake up every hour myself, which is so frustrating. I which i could have a good nights sleep myself. I do feel for you as you must feel completely washed out. I think sometimes if we have been taking certain meds to help us sleep they dont have as much effect. Other times i think Lupus just causes some of us to have insomnia. It could be due to being in pain that we dont sleep, or not being able to get comfortable which is one of my problems at the moment. Its infuriating and frustrating though. I read every night which does help with getting me off to sleep, but then an hour later i am awake again, so i can totally empathise with you. Getting no sleep at all though must be a nightmare for you. Have you tried having a hot milky drink before bed, or reading, or putting the lavender spray on your pillow as that can help induce sleep. There are sprays you can get from the health stores or just lavender pillow spray which can help. It depends whether it works for you or not. I have a few things i got from Avon a while back which are things you can put on your pillow and one was a cream which you put on your eyelids, it was all herbal, i will try anything like that, hehe. As far as i am concerned anything is worth ago, being sleep deprived is no joke is it? Another thing i did was have music on really low calming, soothing music which again did help, but then i woke up again after about an hour, which again is annoying but at least i am getting that hour, its annoying as when i wake i then have to go to the bathroom, hehe, its a vicious circle really. I do hope you can get some sleep soon. I have needed the sleep at the moment as i am in the middle of a flare, but the sleep is only in short bursts. It would be nice to wake up feeling refreshed. I dont think many people who have Lupus ever wake up feeling very refreshed sadly. Anyway good luck, take care, thinking of you, look after yourself, hang in there, bye for now, love and hugs Astrid40xoxox
It seems like not sleeping is part of Lupus. Is it a Lupus flare or just unrest due to activity in the body? Any thoughts
I started taking this stuff called "serious relaxer"made by wish garden herbs..its in liquid form,Itake a dropper full at night with all my meds..I get it at a health food store call new seasons..it helps,I have sleep apena..I had the surgery to have the uvela removed to open up my airway,so i can't sleep with the cpap,I have to sleep with oxygen instead..I tried meltonin..I feel like i wake up every hour on the hour,And the new heart meds i take or maybe the combo of all the meds make me have such bad dreams..whats weird is i can lay down at 3 in the afternoon and sleep good untill 5..thats probley the best sleep i get..Im a worrier,I worry over every thing,I cant seem to get my brain to shut up long enough to rest peacefully...I do sleep a little better when my husband is home,he is a LT.FireFighter/emt.so he sleeps at the firestation on his shifts..that when i spend my nights up reading or im on the computer ..MY son says hes buying me a kindle for mothers day..because he says he hardley ever sees me sleep..IM open to sugestions myself if anyone has them..Id love to sleep the whole night without waking...good luck with your sleep.. take care of yourself ,or let me know if you just need to chat..im always looking for a better way to sleep..if i come up with something good i will share it with everyone..god bless friends..celeste
Hi Unshoreandscared, I think you are right there, it makes sense. With everything thats happening in our bodies, its not surprising we cant get proper rest. We are trying to fight off pain. And we are uncomfortable through pain and whatever else we have going on, so its not surprising we cant get off to sleep at times. I am in the middle of a flare at the moment, and all i want to do is sleep at the moment, as i feel so tired, but i am still waking up every hour because i am uncomfortable. I also have poor circulation and vasculitis which doesnt help me get a restful night, as i get cramp and pins and needles in my legs and feet, then i have to get up and move my legs and feet to get rid of the cramps. Its a complete nightmare at times. I also have sleep apneoa which doesnt help. There are so many contributing factors as to why we all dont get a good nights sleep. I wish i could have a good full nights sleep like i used to before i got the Lupus, i know that will never happen. So i now pace myself and also take small power naps to get through the day. Anyway thankyou for bringing this up Unshoreandscared, it does make sense what you said, i totally agree thats probably the reason why we dont get proper sleep alot of the time. Anyway take care, bye for now, love and hugs Astrid40xoxox
Unshoreandscared said:
It seems like not sleeping is part of Lupus. Is it a Lupus flare or just unrest due to activity in the body? Any thoughts
Hi celeste, Thats interesting about the herbal stuff you take. I also have Sleep Apneoa,. I think alot of people who have Lupus have Sleep Apneoa, i have spoke to several others who have Sleep Apneoa, its not easy is it. The CPAP isnt very conducive to getting off to sleep. I know you have said you cant have that though so just use oxygen which is properly less noisy in a way. Years ago they were going to remove my adenoids but never did because of the risk to my health. And they said about removing something else it might of been what you have had done, i cant remember what it was now. They said i had narrowed airways at the top of my nose and my nose was swollen inside, They have given me anti-allergy tablets as well. I wake up every hour as well, its frustrating, as then i dont know about you i feel as though i need to go to the bathroom then, its really frustrating. Its funny you should say about bad dreams as i have loads of those, and i shout out sometimes in my sleep and wake myself up. Sometimes my husband will say to me its okay, its only a dream. Its horrible isnt it? I hate it when i wake from having bad dreams. One day i remember having to have a lay in because i hadnt got much sleep the night before, and i remember hearing myself scream from the dream, and i thought my god i hope my neighbours didnt hear me. I am the same as you. I am a complete worry wart as they say, everything goes into overdrive as far as worrying goes. I try and read to switch my brain off at night which does help abit. My husband is an on call engineer and gets called out at night and has to travel miles. A couple of weeks ago he went to Scotland as i live in the Uk, and he got driven head on into by a joy rider. It was so worrying, he was okay thankfully but his works van was wrecked of course. Thankfully he had another engineer with him, so he had someone with him when he was in shock. It is a worry when you have a fire fighter for a husband, i can totally understand that. I would worry too, but at the end of the day all the worrying in the world wont help him. I know it must be really hard. I keep telling myself its not going to help my husband if i keep worrying every time he goes on a long journey, okay nowhere near as dangerous as what your husband does for a living. My husband has to go and put shop fronts back in after there has been say a ram raid, and i do think i hope they have well and truely gone from the scene. When the riots were on in London, my husband got chased by a load of youths with baseball bats as he was trying to fix a Banks sliding doors, and they wanted to get in, and this was just after the riots were supposed to be over. So i do know where you are coming from.
A kindle would be a great idea, i have a Kindle and its great, you can get some really reasonable priced ebooks for it and some really good free ebooks as well. On Amazon where you would get your ebooks for the Kindle, they have a list of the top 100 free ebooks that they give away. Why not have a look on Amazon and check out the books and that might get you thinking about reading with one. If you go to Amazon then go to the Kindle part, there is a part at the side of the page which says top 100 books free or to buy, have a look, it might inspire you. Kindles are really easy to use as well. You can get the push button one or the touch. I have got the touch one now, i am really pleased with it. What i would say is if you are not used to touch, get the press button one. Either one is great. I am a real fan of mine. I am up alot during the night too, so i do know what you mean. Any time you would like to message me, feel free. I am not sure if i have you added as a friend yet, i will do that in a minute, any time you would like a chat feel free to message me. I am an avid reader, so i can always help with recommending some good books if you would like. Take care, look after yourself, thinking of you, love and hugs Astrid40xoxo
celeste said:
I started taking this stuff called "serious relaxer"made by wish garden herbs..its in liquid form,Itake a dropper full at night with all my meds..I get it at a health food store call new seasons..it helps,I have sleep apena..I had the surgery to have the uvela removed to open up my airway,so i can't sleep with the cpap,I have to sleep with oxygen instead..I tried meltonin..I feel like i wake up every hour on the hour,And the new heart meds i take or maybe the combo of all the meds make me have such bad dreams..whats weird is i can lay down at 3 in the afternoon and sleep good untill 5..thats probley the best sleep i get..Im a worrier,I worry over every thing,I cant seem to get my brain to shut up long enough to rest peacefully...I do sleep a little better when my husband is home,he is a LT.FireFighter/emt.so he sleeps at the firestation on his shifts..that when i spend my nights up reading or im on the computer ..MY son says hes buying me a kindle for mothers day..because he says he hardley ever sees me sleep..IM open to sugestions myself if anyone has them..Id love to sleep the whole night without waking...good luck with your sleep.. take care of yourself ,or let me know if you just need to chat..im always looking for a better way to sleep..if i come up with something good i will share it with everyone..god bless friends..celeste
And she was loved and still VERY missed around here , by everyone !! But time has healed slowly , but hang in there things will get better slowly ... Beverly K.
Sobby802 said:
Wow, 20 years to have a pet is a long time. I'm not ready for another dog yet. I need time. Thanks for writing,
I think it's both !!! ome days i cn be very tired and can fall asleep quckl and then there are other days am upall day and nite without sleep 2-3 days at a time .. So maybe it's both, am going to ask the doctor when i visit him the next time this is CRAZIE. At first i thought it wasme , but i see/ hear that's happening to jst about everyone dealing with LUPUS. Whatever th case is i hope that it stop soon ...LOL.. Beverly L.
Unshoreandscared said:
It seems like not sleeping is part of Lupus. Is it a Lupus flare or just unrest due to activity in the body? Any thoughts
Thanks everyone for the suggestions. I think I just got out of a flare but the fatigue is so aggravating. I think that when I do stuff during the day I have a hard time with sleep. I think I should be tired but I am figuring out that my body is going to feel the opposite. And now my epidural shot for my back issues has wore off so any way I turn at night it hurts. I feel like i am being mean to my husband by sleeping on the couch. Since if I sleep in bed he puts a leg on my back and when I wake up I am in the worst pain and no drug can help it. I just hope that when my Medicare kicks in July then I can get the Ned’s my Medicaid won’t cover and I can feel better. I am sorry about the complaints it feels like that’s all I do but I can’t looks it in any longer it’s making my OCD insane!!!
Beverly L. said:
I think it’s both !!! ome days i cn be very tired and can fall asleep quckl and then there are other days am upall day and nite without sleep 2-3 days at a time … So maybe it’s both, am going to ask the doctor when i visit him the next time this is CRAZIE. At first i thought it wasme , but i see/ hear that’s happening to jst about everyone dealing with LUPUS. Whatever th case is i hope that it stop soon …LOL… Beverly L.
Unshoreandscared said:It seems like not sleeping is part of Lupus. Is it a Lupus flare or just unrest due to activity in the body? Any thoughts
Hi Heather, you are welcome, I really feel for you at the moment. I do understand as i am in the middle of a flare which is driving me mad at the moment. You are not complaining, we all need to get things off our chests now and again. We all need to vent every now and again about things that are bothering us. How awful that your epidural has worn off, no wonder you are uncomfortable. I dont blame you for sleeping on the couch, i am sure your husband understands. Men are so funny when they sleep, they move around much more than we do. And the noises they make sometimes is enough to wake us up. My husband sometimes talks in his sleep about work mainly, and i think for goodness sake be quiet will you, you have just woken me up! its definately a man thing, hehe. I think when we are more unwell things like OCD do get worse. I used to have OCD a long time ago, but i still have certain traits of it, i will check alot. And i have got this thing about checking the door at the moment, and i know its alot worse because of me having the flare, but i also think its about everything else being out of control and by checking and making sure the door is locked either inside or if i go out is abit of making my world safe if you know what i mean, when everything else is so out of my control. I am sure part of it is to do with that. Anyway my friend you take care, look after yourself, hang in there, thinking of you, love and hugs Astrid40xoxox
So glad Heather, you are unsure when flares are abound, now I don't feel like an idiot!! Sooo, happy. When I am leaving a "flare" I tend to feel wonderfully energized, and sleep really well. So, maybe you are on the right track, revel in the good feeling. I do.
Heather said:
Thanks everyone for the suggestions. I think I just got out of a flare but the fatigue is so aggravating. I think that when I do stuff during the day I have a hard time with sleep. I think I should be tired but I am figuring out that my body is going to feel the opposite. And now my epidural shot for my back issues has wore off so any way I turn at night it hurts. I feel like i am being mean to my husband by sleeping on the couch. Since if I sleep in bed he puts a leg on my back and when I wake up I am in the worst pain and no drug can help it. I just hope that when my Medicare kicks in July then I can get the Ned's my Medicaid won't cover and I can feel better. I am sorry about the complaints it feels like that's all I do but I can't looks it in any longer it's making my OCD insane!!!
Beverly L. said:I think it's both !!! ome days i cn be very tired and can fall asleep quckl and then there are other days am upall day and nite without sleep 2-3 days at a time .. So maybe it's both, am going to ask the doctor when i visit him the next time this is CRAZIE. At first i thought it wasme , but i see/ hear that's happening to jst about everyone dealing with LUPUS. Whatever th case is i hope that it stop soon ...LOL.. Beverly L.
Unshoreandscared said:It seems like not sleeping is part of Lupus. Is it a Lupus flare or just unrest due to activity in the body? Any thoughts