Its interesting how your body changes over the years. I used to sleep like a baby. Now i have to be totally wiped!!!!!! to fall asleep. my husband doesnt understand it. He thinks sleeping patterns is e one thing in Lupus we can control. just "go to sleep early" . How many of you had heard that? or " Just go to sleep" "turn everything off"
"try having the same routine eery night" "ambien doesn't work??"
The things we cant explain sem to be the direct cause of Lupus. But its challenging to see others opinions of you or their judgements. We shuldnt care. But we care about how it affects those closest to us. Living in our homes. Spouses and children.
I know! I constantly get “try this or try that…it works for me” and they just can’t understand how difficult sleep is whether its the inflammation, swelling, joint pain, organ pain or the medication. Who knows? The only thing I know is it is soooo difficult to just fall asleep. I can’t even nap which makes me even more frustrated! Sometimes I think I just add to it knowing every night sleepy time is going to be a challenge! Believe me I have tried it ALL for years since I was 17. I am now 46. So I’ve had these sleep problems almost 30 years.
I have found some help in Melatonin though. I take 3 mg. about 2-3 hours before I want to go to sleep. It helps but I still wake up a lot during the night and sometimes can’t get back to sleep. So, I figure some sleep is better than none and at least I am resting my eyes, body and brain by at least laying there for a few hours.
If anyone could solve the sleep mystery they would be a “zillionaire!” LOL!
Melatonin is a nono for people with lupus, even so it helps. I found out via bulletin on the lupus website.Just like garlic is bad and number of other stuff. what helps me, when I can is walking. Other then that TV and books became my friends :)))
It is hard, since people around us just dont understand
I had this for years! Long before I was finally diagnosed with Lupus. My depression and anxiety was part of it, and joint pain was the other. I have actually been sleeping pretty well for about a week now. I think my doctors finally found the combination of meds and routines that have me sleeping decently. Fingers crossed! I hope you can find your combination soon. Sleep is so important for lupus and depression. HUGS!
Glad to see this discussion. Going through this at this very moment. Was in hospital last Tuesday for Severe Insomnia. I hadn’t slept in 3 days and was starting to crash. Been on several sedatives, anti-anxiety medications and taken almost all over the counter teas and sleep meds.
ER MD. and my GP are referring me to a sleep clinic to have a full evaluation. Hoping that they can tell me why I can’t sleep and stay asleep.
If anyone has had a sleep test done, would love to hear your experience and if it had helped.
I can't sleep because of high cortisol levels. I don't take any steriods at this time, but my cortisol was tested and it was high. Of course the docs want to try ambian, which didn't work. I just got tired of messing with going to the doc. I've tried antihistamins, mixing Somnex and alcohol, Nyquil, and just drinking my self to sleep. But, I hate doing all that because I know how bad it is for me. I have been using Natural Calm, a magesium powder you mix with water and taking "Cortisol Manager" from Integrative Theraputics. I got both on Amazon. If I take both of those before I go to bed, I do better. Its still not like my sleep used to be, but it's better than laying in bed and staring at the clock all night know how bad tomorrow is going to be. Of all of it, the effort to sleep rules my thoughts on a daily basis, I get so upset. How hard can it be to sleep? I used to sleep like a rock. If anyone else has any luck with anything, please post.
Where did you hear that garlic was bad for us? Susan
alexis said:
Melatonin is a nono for people with lupus, even so it helps. I found out via bulletin on the lupus website.Just like garlic is bad and number of other stuff. what helps me, when I can is walking. Other then that TV and books became my friends :)))
It is hard, since people around us just dont understand
Interesting discussion...years back before i took ill, i went to bed ok and dropped off but never a deep sleeper but over the years being highly drugged my last lot of meds are took at 11pm and i never hit bed till 1 or 2am but when i go i'm gone and how i sleep does'nt disturb my hubby as he as insomnia and never gets in bed till 4 or 5am in the morning.
Have you ever thought you may have insomnia as Lupus does cause it besides it coming on naturally.
I've had problems staying asleep for a while now. I've tried different sleeping pills without results. Recently I've been on Doxepin & it works but I have weird nightmares. Not being able to sleep made me feel awful, short tempered & exhausted. I tried marijuana once, worked beautifully with no side effects. I've been thinking about getting a card so I can buy some. It's suppose to help pain too
I haven’t seen anything about melatonin being a no no. Where did you see it? I have to look now. I know alfalfa sprouts are bad but that’s all I have seen. Please find it for me. I would really appreciate it. I don’t want to add to any of my issues! I have even given it to my son for sleep. Geeze, is anything safe anymore? It’s scary right?
everything you mentioned.... from joint pain swelling... nerve sensativity.... skin burning.... blah blah blah......
its just not that easy for us as it is for others to enjoy a great night sleep.
Especially after your body gets used to so many meds....
natural meds... and pharmicudicals (spelling )
sometimes people just understanding this is a problem for you rather than trying to solve it would be nice.
and maybe thats just the "feeling" AFTER trying so many things.
tinapet said:
I know! I constantly get "try this or try that....it works for me" and they just can't understand how difficult sleep is whether its the inflammation, swelling, joint pain, organ pain or the medication. Who knows? The only thing I know is it is soooo difficult to just fall asleep. I can't even nap which makes me even more frustrated! Sometimes I think I just add to it knowing every night sleepy time is going to be a challenge! Believe me I have tried it ALL for years since I was 17. I am now 46. So I've had these sleep problems almost 30 years.
I have found some help in Melatonin though. I take 3 mg. about 2-3 hours before I want to go to sleep. It helps but I still wake up a lot during the night and sometimes can't get back to sleep. So, I figure some sleep is better than none and at least I am resting my eyes, body and brain by at least laying there for a few hours.
If anyone could solve the sleep mystery they would be a "zillionaire!" LOL!
is anything safe...???? thats a sad one there. *as i shake my head no*
anything that isnt in its natural form.... i would assume is NOT good for us.
But we are stuck doing what we must.
tinapet said:
I haven't seen anything about melatonin being a no no. Where did you see it? I have to look now. I know alfalfa sprouts are bad but that's all I have seen. Please find it for me. I would really appreciate it. I don't want to add to any of my issues! I have even given it to my son for sleep. Geeze, is anything safe anymore? It's scary right?
i guess i have never taken the time to learn more about it.
I am 100% sure i have it.
as i can go 48 hours sometimes... with kids...work... etc... before i actually go to sleep.
I try to not take ambien just to make ure my body doesnt become addicted. as the dose will have to be increased.
So yes.... i agree with you. Going to have to read the link.. to learn more.
there is always more to learn.
this disease always cuases NEW issues/disease/symptoms.
Is there ANY other disease that works like Lupus?
No disease is pretty. But lupus is the sneakiest disease to me.
It makes you think you are healthy when you wake up in the morning... until you turn to get out the bed. or take a cfew steps and realize your stiff as wood boards.
I shouldnt be joking but its so true.
LOL.
uggh. Lol.
Tez_20 said:
Hello lifewithlupus,
Interesting discussion...years back before i took ill, i went to bed ok and dropped off but never a deep sleeper but over the years being highly drugged my last lot of meds are took at 11pm and i never hit bed till 1 or 2am but when i go i'm gone and how i sleep does'nt disturb my hubby as he as insomnia and never gets in bed till 4 or 5am in the morning.
Have you ever thought you may have insomnia as Lupus does cause it besides it coming on naturally.
YES! short temperored.. this is the worst to me. becuase everyone thinks ur grumpy for no good reason.
its not fair to our children... or spouses.. and family... etc.
I am too afraid of doing the marijauna thing now. As the years go by i told myself i would try new things.
But as of now-- the appetite you get from that is not pretty. I would eat everything in my fridge.
The steroids do that also.
So i am going to have to stay clear at least until the years pass and whati do now for pain no longer works.
But its natural!!!! so fight with my decision on this topic.
maybe because my family members have struggled with this one...
OC GAL said:
I've had problems staying asleep for a while now. I've tried different sleeping pills without results. Recently I've been on Doxepin & it works but I have weird nightmares. Not being able to sleep made me feel awful, short tempered & exhausted. I tried marijuana once, worked beautifully with no side effects. I've been thinking about getting a card so I can buy some. It's suppose to help pain too
Where did you hear that garlic was bad for us? Susan
alexis said:
Melatonin is a nono for people with lupus, even so it helps. I found out via bulletin on the lupus website.Just like garlic is bad and number of other stuff. what helps me, when I can is walking. Other then that TV and books became my friends :)))
It is hard, since people around us just dont understand
I am so glad i joined this online support group. Just in the last 24 hours... I have so much to read about and learn about. So grateful
I agree... its bad for our body......when i was younger i did wine. but now that my liver is weaker.thats NO longer an option for me.
even anithistimine doesnt work well for me... becuase i get hives so bad at night.
I usually have 1 day a week... GOD willing... that I am OUT for 16-24 hours.
Sort of lik when your sick with a cold.. and all you do is sleep... get up for water.. pee... BACK to Sleep. If i can do this once a week.
Unfortuantely this revives e.
But recently... i have not had this..
so it has my temper and fuse realy low.
It makes me feel like a horrible wife and mom.
Crying fits and all.
Hot mess.
embarrassing.
ugggggghhh.
and it seems like as long
That the antihistime will help me stop itching (SOMETIMES) but not put me to bed.
Kira said:
I can't sleep because of high cortisol levels. I don't take any steriods at this time, but my cortisol was tested and it was high. Of course the docs want to try ambian, which didn't work. I just got tired of messing with going to the doc. I've tried antihistamins, mixing Somnex and alcohol, Nyquil, and just drinking my self to sleep. But, I hate doing all that because I know how bad it is for me. I have been using Natural Calm, a magesium powder you mix with water and taking "Cortisol Manager" from Integrative Theraputics. I got both on Amazon. If I take both of those before I go to bed, I do better. Its still not like my sleep used to be, but it's better than laying in bed and staring at the clock all night know how bad tomorrow is going to be. Of all of it, the effort to sleep rules my thoughts on a daily basis, I get so upset. How hard can it be to sleep? I used to sleep like a rock. If anyone else has any luck with anything, please post.
i want to be in a cold room(because i am always HOT) and under my covers.
Believe it or not... the best time of day for me to sleep is 5am-10 am/
Too bad this doesnt fit my lifestyle.
I am looking forward to hearing more from you and what becomes of the sleep study.
I am so sorry.
I hate the suffering.
And i am sure the doctors MOST likely were looking at you like you were crazy - becuase they just DONT get it. They are so BLACK and white....and Lupus is so GREY/.
i hate explaining to docs who are not familiar with lupus... that i have lupus.
They try to make u feel like its mental.
and yeah--- itr sure can cause mental issues if they suffered like us day in and day out.
I feel for u rightnow.
newbe said:
Glad to see this discussion. Going through this at this very moment. Was in hospital last Tuesday for Severe Insomnia. I hadn't slept in 3 days and was starting to crash. Been on several sedatives, anti-anxiety medications and taken almost all over the counter teas and sleep meds. ER MD. and my GP are referring me to a sleep clinic to have a full evaluation. Hoping that they can tell me why I can't sleep and stay asleep. If anyone has had a sleep test done, would love to hear your experience and if it had helped.