YES! AND hot!
i AM 30 AND I HAVE BEEN HAVING HOT FLASHES since i was 15.
Seriously.
no one believed me.
Well its only gotten worse.
I start sweating really bad....to the point thats its noticeable to others.
UGGGGH. they are wondering why i am sweating so bad.
Anita Chandlef said:
Yes it is, between that and hot flashes I sleepy when I can, there is no medicine that helps becUse if I fall a sleep I'm back up at 1-2 am
I, also, have tried virtually every sleep aid available. This month my doc switched me to Resteryl, which is in the benzodiazapam family. I find that if I take a nap during the day and a Resteryl at night it has the ability to turn off my thoughts. That seems to be the worst part of trying to sleep. I think, based on the research that Terri has done on the impact to the CNS, that many of us simply cannot turn off our thoughts and the anxiety that comes with it.
I don't have the nightmares with it that I had with many of the other aleep aids.
Listen to your body and rest when it tells you and you will feel tons better.
Best of health,
DeAnne
My info comes from the Lupus Foundation. Look on there side and u find different stuff. Melatonin, Garlic , Alfalfa,are things that are not good for us. Dairy is not a great thing, as well as tomatoes, to much Citrus fruit,Eggplants and more. The best stuff, spinach, kale, parsley all those really dark veggies. I am doing alot of juice, bought a juicer. It helped, not easy, but better then the constant pain. I am turning 50 in June and had Lupus for the past at least 8yrs. Even so it got confirmed only 2 yrs ago, by accident .Only because my foot was really bad and the doc ordered a blood test, and all the yrs before the same hurt. I wish they would invest in more research.
Well I hope I will get better. At least i am trying to keep a positive out look, :) some of the time.
wow! thank you for sharing. I did buy a juicer....the Nutribullet. and yes while it takes time to do it.
I did feel amazing. my body loves natural food most.
I need to go with my instinct and go raw for a while just to detox.
alexis said:
My info comes from the Lupus Foundation. Look on there side and u find different stuff. Melatonin, Garlic , Alfalfa,are things that are not good for us. Dairy is not a great thing, as well as tomatoes, to much Citrus fruit,Eggplants and more. The best stuff, spinach, kale, parsley all those really dark veggies. I am doing alot of juice, bought a juicer. It helped, not easy, but better then the constant pain. I am turning 50 in June and had Lupus for the past at least 8yrs. Even so it got confirmed only 2 yrs ago, by accident .Only because my foot was really bad and the doc ordered a blood test, and all the yrs before the same hurt. I wish they would invest in more research.
Well I hope I will get better. At least i am trying to keep a positive out look, :) some of the time.
oh my gosh. YESSSSSSS!!!! turning off the thoughts.. it never stops!
so i am NOT crazy!
wow!
I am so glad i joined this support group.
God only knows i was about tobust at the seems.
whathappensinvegas said:
I, also, have tried virtually every sleep aid available. This month my doc switched me to Resteryl, which is in the benzodiazapam family. I find that if I take a nap during the day and a Resteryl at night it has the ability to turn off my thoughts. That seems to be the worst part of trying to sleep. I think, based on the research that Terri has done on the impact to the CNS, that many of us simply cannot turn off our thoughts and the anxiety that comes with it.
I don't have the nightmares with it that I had with many of the other aleep aids.
Listen to your body and rest when it tells you and you will feel tons better.
Best of health,
DeAnne
Here is the site that Ann A posted, and it does warn about melatonin and garlic : ( This was a very informative site for me.
http://www.hopkinslupus.org/
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've also read Garlic is harmful to Lupus suffers...as i used to take it and stopped...then there's the large question is it ok as i've come across other medical sites where it says it's ok and kills any bacteria our systems hold.
Massive ??? on this one :)
I think the same way, I have tried everything and nothing works, sleeping pills, muscle relaxers, nerve relaxers and all kind of natural and prescribed medicines that you can imagine. This is totally crazy, and then after just 2 or 3 hours of sleep every night I have to wake up and go to work and keep a smile and a happy face.
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 think the combination of xanax and flexeril and a new mattress have helped me immensely!
I have the same problem!! I think it’s partially due to the fact that when you are just laying there you can truly feel all of your pain and then your mind really starts to wander. I keep telling doc I can’t sleep and that I don’t need a mind altering pill I need to control pain and discomfort then I will be able to sleep!! Who knows?!?! I am just guessing 
Point is I understand!!! Good luck!! Hope you find a solution…if you do don’t forget to share
Hi, right now I am off of all pain medication since they started to damage my liver, I don't know witch one is worse, lupus, fibromyalgia, thyroid disorders, sjogren's syndrome and now this liver complication, the pain is so bad that I can barely move or breath , I don't wish this kind of pain to anybody. I hope that you all are doing better, sleep well, :))
Queenie said:
I have the same problem!! I think it's partially due to the fact that when you are just laying there you can truly feel all of your pain and then your mind really starts to wander. I keep telling doc I can't sleep and that I don't need a mind altering pill I need to control pain and discomfort then I will be able to sleep!! Who knows?!?! I am just guessing ;)
Point is I understand!!! Good luck!! Hope you find a solution...if you do don't forget to share ;)
I have had the same problem for years and my Rhumie does not understand - he is into natural herbs and I want drugs. So he finally gave me some Lunesta which knocks me out but I only get about 5 hours of sleep. It is so frustrating!!
Seriously, you would think that we are just a small percent of all the people that have this problem. Why can't they figure out a way for us to get some sleep already?
Hi, your not alone-my sleep has been changing even when do go to bed early, it use to make me mad!,!! But now I take 2aspirins and relax, or do a little reading , and sometimes it work and other times am up all by myself watching T.V til over I the morning falling asleep on the sofa. Maybe it is a challenge for us with Lupus for others to try and deal with us staying up but time change alot -sometimes. …Beverly L.
@KIRA
Seriously!! too many people suffer w/ lac of sleep.
if they controlled this issue we probley woul dbe healtheir. have more pain when i watch the sun rise every morning and never closed these eye lids!!! grrrr.
So update......
You know how we have to .... (change words) .... how we attempt to work WITH the Rhuemy- not against them..? meaning.... they want you to try a drug that you feel will not work for you. but u do it anyhow just to show your trying things there way also.???????
Thats horrible... but sometimes you just dont wanna fight about it/
Well they called in Lunesta... and I just finished reading the post on LUNESTA.... so I have no high hopes.
But i am sure the first few days will be nice. just because its a new med. My system is completely used too Ambien at 10mg.... and knows ow to fight the sleep.
YES //// MY BODY fights sleep likea 2 year old who won't nap.
I just refuse to close my eyes sometimes.
I have no clue why.
Anyhow.
WIsh me luck tonight everyone.
I have beent he grumpiest person -- short fused person --- angry person...
and i am sure its a lack of sleep. mixed with pain.
--Cynthia
Kira said:
Seriously, you would think that we are just a small percent of all the people that have this problem. Why can't they figure out a way for us to get some sleep already?
xanex sounds great/
i seriously started having anxiety atuacks.. in this last year.
totally new to me.
Omly when i described to someone what happens-- they mentioned anxiety attacks.
I just associated it with stres...and lupus reaction.
Anyhow.....
my hands are hurting so let me out the PC down.
But until next time.....
artchick said:
I think the combination of xanax and flexeril and a new mattress have helped me immensely!
Hello, they really don’t understand why we have changed from the normal things that we use to do. The problems that we have are something that can’t just go away in a matter of days or hours . It is really hard for us , especially not able to sleep at nite!!! And the doctors seem to think we are over reacting and say "it will pass in a couple of days, just try to relaxe as much as possible. Changing the way we eat don’t help either, I have tried eating more vegetables and less red meats, more fish and really it don’t help either but my engery level through the day has changed alot, am able to do more things longer than I was able, that’s a good thing but I can’t sleep sometimes at nite. So now I just read or write in my journal most of the time- but there are some nites that I just lay still and look at the ceiling and the wall ( day dream ). Hopefully someday there will be a cure for Lupus and all the other things that people have that’s a problem for us to live with, so in mean time we have to do the best that we can !!! Holding on to our self will to beat “Living with Lupus”…Beverly L./>
LIFEwithLupus said:
Seriously!! too many people suffer w/ lac of sleep.
if they controlled this issue we probley woul dbe healtheir. have more pain when i watch the sun rise every morning and never closed these eye lids!!! grrrr.
So update…
You know how we have to … (change words) … how we attempt to work WITH the Rhuemy- not against them…? meaning… they want you to try a drug that you feel will not work for you. but u do it anyhow just to show your trying things there way also.???
Thats horrible… but sometimes you just dont wanna fight about it/
Well they called in Lunesta… and I just finished reading the post on LUNESTA… so I have no high hopes.
But i am sure the first few days will be nice. just because its a new med. My system is completely used too Ambien at 10mg… and knows ow to fight the sleep.
YES //// MY BODY fights sleep likea 2 year old who won’t nap.
I just refuse to close my eyes sometimes.
I have no clue why.
Anyhow.
WIsh me luck tonight everyone.
I have beent he grumpiest person – short fused person — angry person…
and i am sure its a lack of sleep. mixed with pain.
–Cynthia
Kira said:Seriously, you would think that we are just a small percent of all the people that have this problem. Why can’t they figure out a way for us to get some sleep already?
Hi, when things go crazy for ,people will alway say that we are anxiety attcaks- their way of say we are crazy. So what I did / do is come where I know that others will understand, here “Living with Lupus site”. We don’t have to feel like we are crazy about the things that we are feeling and suffer from- Never!!! But after a while it won’t matter , cause we don’t explain or should I say complain about it as time pass!!! It becomes part of our daily routine, we just deal with it …Beverly L.
LIFEwithLupus said:
xanex sounds great/
i seriously started having anxiety atuacks… in this last year.
totally new to me.
Omly when i described to someone what happens-- they mentioned anxiety attacks.
I just associated it with stres…and lupus reaction.
Anyhow…
my hands are hurting so let me out the PC down.
But until next time…
artchick said:I think the combination of xanax and flexeril and a new mattress have helped me immensely!
xanax relaxes my crazy thoughts and worries about the next day, and the flexeril relieves the tension that often comes with the anxiety and lupus. And, I am so surprised at how much difference a new mattress can make! I hope you can find a combo that works for you! HUGS!
LIFEwithLupus said:
xanex sounds great/
i seriously started having anxiety atuacks.. in this last year.
totally new to me.
Omly when i described to someone what happens-- they mentioned anxiety attacks.
I just associated it with stres...and lupus reaction.
Anyhow.....
my hands are hurting so let me out the PC down.
But until next time.....
artchick said:I think the combination of xanax and flexeril and a new mattress have helped me immensely!
geeeeesh! Beverly... u are so right!
ii only recently started dealing wiht these anxiety attacks.... in the lat 12 months where i immediately recognize I am unable to handle or dealwith the stress situation.
Obviously without Lupus my chances of handling the strssfu; sitaution INCREASES major.
But like you said.. everyday... we deal.. we function....we don't always mention whats happening....
we notice it.....and keep it moving.
So your right! thanks for being a great listener and showing true compassion.
#lovethissite
Beverly L. said:
Hi, when things go crazy for ,people will alway say that we are anxiety attcaks- their way of say we are crazy. So what I did / do is come where I know that others will understand, here "Living with Lupus site". We don't have to feel like we are crazy about the things that we are feeling and suffer from- Never!!! But after a while it won't matter , cause we don't explain or should I say complain about it as time pass!!! It becomes part of our daily routine, we just deal with it ....Beverly L.
LIFEwithLupus said:xanex sounds great/
i seriously started having anxiety atuacks.. in this last year.
totally new to me.
Omly when i described to someone what happens-- they mentioned anxiety attacks.
I just associated it with stres...and lupus reaction.
Anyhow.....
my hands are hurting so let me out the PC down.
But until next time.....
artchick said:I think the combination of xanax and flexeril and a new mattress have helped me immensely!