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Insomnia/ Fatigue club

What do you have currently?


  • Total voters
    89

mwb3779

Kitchenhawk
So it was mentioned in another thread that we should start an insomnia / fatigue club. I'll be happy to start this club.

It seems I have been up for the last week almost straight. It's a little crazy. I have been trying all kinds of different things. I've tried just laying there with my eyes closed, the clock turned away from me. I've tired going for a quick walk, laying down opposite in my bed (laying down with my head at the footboard instead of the headboard). I've tired reading a good book and a boring book. No luck there with either. I've tried the internet (that's almost crazy to try because I can just go on there and stay for a while and not even notice the time). I've tried sleeping on different couches. I've tried sleeping in the recliner. Nothing seems to work until I am so exhausted that my body just gives up.

For the last couple of nights what I have been doing is just continuing my day like its not the middle of the night. About 5 or 6 am or so I try laying down again after being up for 18 to 20 hours. I'll turn the lights out and then play a brain teaser of a game on my phone and hold my arms up over my head to wear off whatever energy is left. Takes about 20 or 30 mins then I just can't keep my eyes open anymore and then I pass out. Sometime after that I get the next round of the restroom visits and then at 10 or 11 I'm back up and ready to go again. It seems as if I'm just making the motions everyday and not getting any better.

There are those days when I'm ok with the few precious hours of sleep I do get, then there are those days when I'm so tired I can't sleep. I just lay around and don't want to do anything. Not even eat or watch TV. I know that I need to eat, I've been there. I ate very little for a couple months and lost 95 lbs in the process. I went from being a rather large boy 6' 4" 347 lbs in September 09 to 252 lbs at the end of October 09 and in the hospital. I just didn't want to eat or drink. It was crazy to everyone who knows me. I had never been that tired in my life. Even now with the meds I'm on the pain makes very hard to do normal things. There are times if I have to be out, its easier to use a cane. Why is it so tiring? It's not like I'm doing a lot of strenuous exercise.

If you have any of these types of issues, please let post them here. If you have any advice on what to do with the insomnia or fatigue. If you are taking any sleeping meds, what are they? Do they work? I'm taking Ambein CR. Dr said for to take a half tab of a 12.5 mg tab. Said that that small of a dose wouldn't interact with my other meds. I've read some things on the internet saying Lunesta works better than Ambein CR. Anyone know? Any idea on how to get the energy to do everyday tasks?

My meds are 1200mg of Asacol 3 times a day or 1500mg Sulfasalazine 3 times a day. 100mg of 6 mp once aday. 20mg of Prednisone once a day. Prilosec 20mg once a day. 7.5 mg of Glipizide 5mg in the AM 2.5mg in the PM. 6.25mg of Ambein CR. 40 mg of Fluoxetine once a day. 10mg of Oxycodone for pain every 4 hours as needed. 100mg of Colace twice a day. And a multivitamin once a day.

Seems like a lot to me. I don't know, what do you think? Think its the meds is why I can't sleep or feel like crap some days.
:confused2: :ybatty: :confused2: :ybatty: :depressed:
 

imisspopcorn

Punctuation Impaired
I took an awesome nap this afternoon....We were outside in the cold at my daughters' soccer tournament all morning. I slept terrible last night. I actually feel like I can tackle some laundry...yipee! We will see what happens tonight. I've been on tons of meds like you in the past..currently I'm only taking Remicade, Asacol, Zoloft and vitamins....I know that prednisone has always messed with my sleep in the past.
 
I am always tided too, have been for years, even way before Crohns this past July. It got WAY worse though aftre diagnosis and I think the steroids have played a huge part as I was having really bad sleep problems up til the last couple of weeks. Pred does not let you rest and sleeping is near impossible in my experience. I was at a point of not being able to sleep more that 2 hours at a stretch, even with sleeping pills. And the fatigue was far worse than anything I'd had before, to the point of some days not functioning at all, not even being able to focus on the TV like you said.
Seems to be improving now FINALLY (am at 7.5 mg pred) and I actually get about 6 hours proper sleep as opposed to 2-4 like before. Still exhausted but not nearly as badly!
 

mwb3779

Kitchenhawk
I get that totally. I'm not sure if I will have to go back up on the prednisone yet. I don't think I getting a whole lot better right now. If I do I will end up having to go on insulin because of how high it spikes my blood sugar. I'm just wondering if I should just give up on the sleep and do whatever at this point.

Shaz what kind of sleeping pills did you take?
 
the pills they gave me were called zopiclone (I think?) apparantly only short acting. The doc didn;t want to give me anything heavier. Problems was they made me go to sleep but not STAY asleep! Very frustrating! Hope you get some relief soon!
 

mwb3779

Kitchenhawk
Probably Zolpedium. Its the same as Ambein. So funny I took Ambien and I'm not even tired and now I'm watching a commercial saying how well it works. Boo.
 
Definately Zopiclone, just had a look, but I am in New Zealand so maybe under a different name? Definately helped me get to sleep but not for long!
I understand your frustration. In the last few montsh I've spent hours lying in bed unable to sleep and knowing I have to get up the next morning. It's horrible!
 

mwb3779

Kitchenhawk
Just looked it up, it's called Lunesta here. I have heard that is a great go to sleep drug. I'll have to ask my dr about it.
 
The more i dont sleep the more sick i get! But then the more i am awake the more pain i feel.
Cant win either way BUT my boyfriend bought me a new computer and set me up with games that i love, it helps for a couple of hours but then movies are my next resort when my eyes start to go square from the computer.
Why not try some things like that :)
 

mwb3779

Kitchenhawk
Maybe they could combine some drugs to help me get to sleep and then another to stay asleep? What I wouldn't give for 8 hours of unbroken sleep. Its 2 am here and I'm wide awake. I've been up since 10 am after sleeping only 4 hours.
 
I prefer good old fashioned temazepam. The other ones, Zopiclone/etc made me feel worse the next day, and often didn't work.

The trick I have found is that my body sleep clock gets out of sync, so it needs a kick back. So I take the temazepam on at least 3 nights running. But not more than about 5. Haven't needed 5nights in a row for years now.

General medics, GP/PCP? dont like prescribing it as it's addictive and easily abused.
 
C

crazycanuck

Guest
Unfortunately mike I know what your going through just passing midnight now and I was wide awake at 6 am this morning on the toliet after a 5 hour sleep night the night before. Tomorrow I jst know as my body is still accustomed to waking up at 7 for school I'm sure I will be awake atleat by that time :( I sometimes do situps/pushups at this point to wear off energy and feel really sleepy however tonight I feel very tired but everytime my head has hit the pillow I feel uncomfortable and all day today I've had stomach pains which are still going and for some reason with my tummy pains they actually feel worse when I lay down....so for now I'm up posting and reading and learning.
 

mwb3779

Kitchenhawk
Crazy I'm so with you on that. Except I'm on the east coast. Add 3 hours. Went to bed yesterday morning at about 7 am and got up at 11. Been going ever since. I talked to my dr today about increasing my ambein to a full pill. We'll see its almost 3:30 am and it seems like mid afternoon for me...
 

farm

Captain Insaneo
I hate in-zombia and fatigue!! But for some reason they are both living with me! :)
 

imisspopcorn

Punctuation Impaired
I'm wide awake, but I'm about to suck down some Benadryl....I still wish you all sweet dreams even if I don't have them.;)
 
I just prefer to say that I'm up because my sister lives in Japan so my schedule mirrors the day time in her part of the world ;-)
 

mwb3779

Kitchenhawk
I got to sleep before midnight!! Woke up at 4:30 am, but I slept at a normal time!! Yea!! Just thought I would share some good news for me.
 
I'm joining the club!

Before I got diagnosed with Crohn's I was one of those people people who could sleep anywhere. I needed my sleep, but that was just the way I was, and I could get it whenever I wanted - I even won an award for taking a nap during my finals at uni!

Now though, I am exhausted, and yet I can't sleep... I find it the most alien feeling, having all my life been able to catch a few zzz's any place any time... now I watch 2, 3 4am tick by on the clock as I toss and turn, and then spend my days in a daze because I am so mongied!

The only solution so far that I have found is to completely swamp myself in duvets with a heat pad on my belly, thermals under my PJs, and a woolly hat on... I don't think I actually fall asleep - I think I pass out from the heat! When I wake up later I am usually drenched in sweat (classy), but at least I will have caught up on an hour...

I am reluctant to get sleeping tablets from the doc...I am already worried about the amount of tramadol I take every day and how dependent on it I am...

Lishyloo
 

mwb3779

Kitchenhawk
Welcome to the club!! I would at least ask the dr about sleeping help. Having insomnia really sucks. Then being tired at the same time is worse. Take the clock and turn it around so you can't see it. I've down the overheating thing too, it works or at least you do pass out from the heat. Is tramadol the sleeping pills you got before?
 
Hey Mike - Tramadol are painkillers - I take 8 tramadol and 8 paracetamol per day... aong with all the pred, calcium, supplements... I reckon most Crohnies must rattle as well as al the other dogy noises and yawning sounds we make!
 
I Just took a sleep test last night and they said I have Apenea and Narcolepsy. Wow, in addition to all the other goodies crohns has given me. I have Ambein, I don't take a lot, also for my spondilois and athritis they give me percacet and darvacet.
 
Can I join the party ? I was still awake at 2.30am last night due to pred. Not too bad compared to many on here but I am exhausted today after being at work all day. Don't feel much like sleeping yet but can't stand the thought of hours laying awake. Starting to taper soon so hppeful this won't last long.
 
Can I join too? I have the fatigue the worst ... I've been sleeping okay for a nice change these past few days but I am sooooooooo tired during the day still - it is like I didn't get ANY sleep the night before - I am beginning to think it is these immunosuppressant drugs - Since starting the Remicade and now switching to Cimzia I have had this AWFUL fatigue - anyone else have this on these drugs....I just assumed the Crohns made me fatigued but now I am thinking it is these drugs...
 

imisspopcorn

Punctuation Impaired
I'm going for Remicade in about 1/2 hour...I notice when I get closer to my next dose I feel even more tired....I think it's a vicious cycle???
 
The crohn's makes me tired all the time. I have only just been diagnosed but realise now I have been flaring on and off for about eight years. Sometimes the tiredness was the main symptom. Now on the pred it's wierd being exhausted as well as wide awake with loads of energy - I didn't realise you could feel both things at the same time !
 

mwb3779

Kitchenhawk
Welcome everyone to this fun club. In my experience yes you can feel tired and wide awake at the same time. It is never fun but life right now seldom is. Any idea on how Remicade works? I have been reading so many people on here are on it and it works. I have found that it is super expensive. Like 8 grand a pop. Every 4-6 weeks? That can get way expensive, way quick. Tramadol are painkillers. How do they work compared to oxycodone? Any ideas?
 

farm

Captain Insaneo
mwb3779 said:
Welcome everyone to this fun club. In my experience yes you can feel tired and wide awake at the same time. It is never fun but life right now seldom is. Any idea on how Remicade works? I have been reading so many people on here are on it and it works. I have found that it is super expensive. Like 8 grand a pop. Every 4-6 weeks? That can get way expensive, way quick. Tramadol are painkillers. How do they work compared to oxycodone? Any ideas?
Tramadol isn't as powerful as oxycodone.

REMICADE targets specific proteins in the body's immune system to help control the development of inflammation, significantly reducing painful symptoms in diseases such as plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis.
 
Ok, I'm joining - I've been dragging butt for weeks......and Carrie had to kick me off of here at 1am this morning. What a dichotomy!
 
i'm in too, if its okay? I get home from work at 6;00 pm and sit down in front of my computer and start dosing off. But when I try to sleep I'm wide wake. Weekends are the worse. 3-5 am before I can cat nap for a couple of hours. Just been exhausted lately. Some of it has to do with all the stomach pain I'm in.

Told Janis that if it doesn't quit soon than I'm calling the GI and seeing about tapering the Entocort so I can start the Remicade sooner than Febuary. Back to liquids again cause even soft diet is killing me again.
 

mwb3779

Kitchenhawk
farm said:
Tramadol isn't as powerful as oxycodone.

REMICADE targets specific proteins in the body's immune system to help control the development of inflammation, significantly reducing painful symptoms in diseases such as plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis.
Thanks Farm. Any idea why its so expensive??
 
Pirate - ((HUGS)) buddy - I'm sorry you are having a rough time!! Wishing it would calm down for you!

Mike - Remicade is made from mouse proteins. I'm guessing it is so expensive because R&D for these drugs is expensive and creation of it is probably expensive as well (probably the main reason for the expense since it is a biologic drug, not a compound)- plus you know the drug companies have to make that good return on their investment before their patent runs out! I'm also guessing here - but the more the drug is used by the market - the less it probably costs. Seeing as primarily people with RA (rheumatoid arthritis) and Crohns take Remi (along with a few others) - maybe the market share isn't that great so they charge more because of that? Who knows - we would need a drug economist to tell us!
 
Almost nothing with this disease is "fair" in my opinion. Wow - time for me to turn on "Mr. Brightside" or something LOL!!
 

mwb3779

Kitchenhawk
So true. Welcome to the club Mark. Every night is Ambein night for me. Doesn't always work though.
 

mwb3779

Kitchenhawk
Its 2:45 am. I'm wide awake. I woke up at 11 am today. The night before I went to bed at 6 am. How long can my body keep this up??

It seems as the days/ nights get longer I get the munchies like I haven't eaten all day. Why is this? Prednisone? Anyone have any ideas on how to curb this craziness?
 
Mike, high doses of pred can make you have a huge appetite! When I was on the initial high dose I would have eaten just about anything. I would eat a full dinner, bigger than I'd had in ages, and then after that I felt like I could have eaten it all over again. I even had to get up in the night for snacks.
If you had put a severed head on a plate I probably would have eaten it!
It eases off when you taper - for me it did this quite fast and now I actually don;t have much appetite at all.
I was sleeping better for a couple of weeks too, but now am back to laying awake most of the night :(
 

mwb3779

Kitchenhawk
shazamataz said:
I was sleeping better for a couple of weeks too, but now am back to laying awake most of the night :(
I'm with you on the lying awake. I have just given up lying down. Which why I'm on here. Rather do something to wear out my mind or at least my eyes.

What's considered a high dose of Pred?
 
I'm no expert on the pred, mike, but I was on 80 then 60 when in hospital in July and then came out on 40, which is a standard dose I think. I actually feel like it was too much and may be why I'm having such a struggle with the taper. I'm only little and they seem to give the same doses to much bigger people.
Perhaps Carrie or someone can explain why pred doesn't go on weight?
 

mwb3779

Kitchenhawk
I do not remember what they had me on in the hospital. It was IV though. The nurses said it was some pretty heavy stuff. I was on the IV stuff for a week and a half. It seemed to be constantly running through that needle. Perhaps that's why I got so little sleep there? I was on 40 mg coming out of the hospital, but my blood sugars went through the roof so my GI backed it down to 20 mg overnight.
 
Yup, Pred can apparantly cause diabetic symptoms and since you already have diabetes, you're needing a lower dose. Perhaps that is a good thing as you will come off it faster :)
 
I hope you get some sleep soon Mike, it was doing my head in for a while there. Makes for long hours to think about stuff eh?
Maybe some hard liquor? ;) Not that that will be helpful with Crohn's and diabetes :(
 

mwb3779

Kitchenhawk
It really does. My days/nights are longer than I ever remembered. Even when I was younger, at least I slept in late after staying up all night.
 

mwb3779

Kitchenhawk
Ok, last night for some reason I was sleepy around 3am. I woke up at noon. Longest night of sleep I've had in months. Tonight/ This morning (whatever now) I'm still up and its 545 am. I still wide awake. The pains are back but not as bad as earlier today. It has been one very weird day/night/morning. To be honest all I want is at least 6 uninterrupted hours of peaceful sleep. Between midnight and 6 am. Is that so much to ask for, really? Come on....
 
6 hours in a row would be AMAZING! Even when I CAN sleep I have to get up to pee at least twice between say 11pm when I go to bed and 8 when I get up. With bad insomnia I probably pee anywhere up to 6 times! Where does all the wee come from??!!
 

mwb3779

Kitchenhawk
shazamataz said:
6 hours in a row would be AMAZING! Even when I CAN sleep I have to get up to pee at least twice between say 11pm when I go to bed and 8 when I get up. With bad insomnia I probably pee anywhere up to 6 times! Where does all the wee come from??!!
I truly have no idea. I'm wondering where all the other stuff comes from. I don't eat that much.
 
I'm going to join your guys' club, if that's alright. :)

I typically don't get to sleep until 5 or 6am, and usually wake up around noon. I'm incredibly lucky (kind of) that i'm not working right now due to uncontrolled pain, so thankfully i can just lay around zombie-like all day. I find around 5pm i get tired, and usually can nap for a couple hours. I try not to, for fear napping makes things worse, but it doesn't seem to....I'm just at a loss. Once in a while i take some melatonin and ativan, and seem to be able to get a few hours during the night....otherwise, i seem to do my best sleeping during the day.
 

farm

Captain Insaneo
tamesis said:
I'm going to join your guys' club, if that's alright. :)

I typically don't get to sleep until 5 or 6am, and usually wake up around noon. I'm incredibly lucky (kind of) that i'm not working right now due to uncontrolled pain, so thankfully i can just lay around zombie-like all day. I find around 5pm i get tired, and usually can nap for a couple hours. I try not to, for fear napping makes things worse, but it doesn't seem to....I'm just at a loss. Once in a while i take some melatonin and ativan, and seem to be able to get a few hours during the night....otherwise, i seem to do my best sleeping during the day.
:welcome:
It's a beast alright!

What are you diagnosed with?
 

mwb3779

Kitchenhawk
tamesis said:
I'm going to join your guys' club, if that's alright. :)

I typically don't get to sleep until 5 or 6am, and usually wake up around noon. I'm incredibly lucky (kind of) that i'm not working right now due to uncontrolled pain, so thankfully i can just lay around zombie-like all day. I find around 5pm i get tired, and usually can nap for a couple hours. I try not to, for fear napping makes things worse, but it doesn't seem to....I'm just at a loss. Once in a while i take some melatonin and ativan, and seem to be able to get a few hours during the night....otherwise, i seem to do my best sleeping during the day.
You and I seem to be on the schedule. Today I tried going to bed around 8 am, fell asleep somewhere around 830-9. Woke up an hour ago (2 pm). Most of my best sleeping I find is during the day. I'm also at the worst pains in the morning. Maybe in my mind, I will myself to sleep in the morning to avoid those bad pains. I wish I could be on a "normal" schedule though...
 
My god Im soooooooooooooooo tired!! I have never had any issues in my life with sleeping could sleep anywhere but since august have struggled with regular sleep. Its really starting to get to me as Im always tired and rundown. Like last night I was nearly falling asleep while out with friends got home went to bed around 11.30pm actually got to sleep fine but was tossing and turning only 2 hours later, then by 4am I had really sore shoulders and a tension headache as my neck was killing me. I layed there for another couple of hours hoping and praying that the pain would go away so I could get some more sleep but no ended up getting up at six and now Im struggling staying awake. This seems to happen most days today tho was especially bad... I also think Im getting sinus as Im all clogged up and have a headached across my sinus! Just another thing to contend with. Sorry guys just a bit down this morning from not having enough sleep which seems to be a regular things and Im just really over not catching up on the missed sleep. I go to my GP on Monday about my joint inflammation so will speak to her bout sleeping and pain etc also bout my sinuses they are driving me crazy.

Does anyone else have trouble sleeping due to pain, my stomach is calm at the moment its more body pain from swollen joints and my back kills. Its like I need to get a new pillow or bed but I know it can't be it as I can sleep for a week fine and then all of a sudden it will all disagree with me and I am in pain all night! So frustrating.

I totally hear everyone on Pred it was a nightmare for me I actually ended up on sleeping tablets just so I could get a few hours sleep otherwise I was rat shit for work and couldnt functions at all. Considering I design buildings and do up the constructions drawings of them I can't really afford to not be able to concentrate, a mistake on my behalf could be huge!!!

Hope everyone starts getting some decent zzzzzzzzzzzz soon :) Sorry for the long post just sitting here bored as my hubby is still in bed getting his much needed sleep... so jealous!
 
Last edited:
Tan said:
my hubby is still in bed getting his much needed sleep... so jealous!
Isn't it frustrating when other people can sleep easily!!?? My best friend stayed with me recently and she says she is out like a light as soon as she gets into bed and doesn;t wake up til morning. Solid 8 hours. While I am tossing and turning and constantly up to pee! I expect that having Crohns will make one's body tired but I am sure if I actually slept properly I'd feel a whole lot better! I even took a pill last night and was awake 2.5 hours later! AAARRRRGGGHHH!!!
 

mwb3779

Kitchenhawk
Welcome to the club all. I wish no one posted to this thread, unfortunately it just isn't so. Sleeping issues are just terrible. I slept a little while today but I can't get back to sleep. My eyes hurt, my head hurts, my stomach and butt are driving me nuts, and now its gonna start snowing soon. Its supposed to get up to 20 inches or so. I hope I can get it figured out soon.
 
Hey all. i finally got a decent sleep for the first time in a while....Went to bed around 7am and woke every hour, but managed to get back to sleep every time until about 4. i just wish i could do that at night......Now i know i'm stuck with sleepless nights, i usually only get one good night then a bunch of bad ones, but i'm greatful for today's rest.

I actually don't have a diagnosis yet, i just stumbled on this forum doing research on my symptoms last week, and have butted my way in. :) As much as i hate to hear that others are suffering as i am, it's also nice to know that there are others that can relate to how i'm feeling. Often when i read some of these posts, it's like i wrote it myself.

Well, i'm sure i'll be back a little later, but hopefully you're all in bed sleeping away!
 
Yah... I ended up crashing out on the couch for just over an hour it was that great deep sleep that you wish you could experience all night!! Feeling a little more human now that I have had my nannas nap! Hopefully be able to soldier on now for the rest of the day and get some much needed sleep tonight... well thats the plan and like most great plans they never go the way you want them too. :)
 
Well, as i suspected, 3am and still not tired. Don't get me wrong, i'm THRILLED that i got such a great sleep, but have no idea how i'm going to turn myself around....Hopefully i can do so before christmas, going to be a busy day.

Is everyone else sleeping tonight? ;)
 

mwb3779

Kitchenhawk
So I have been up now for 36 straight hours. I'm not tired. Not even a little bit. My body though just wants to give in but I just lay there, awake. Sit there, awake. So I'm just trying to push on.
 
Goodness Mike, that sucks! I slept a few hours today, and am still wide awake at midnight.

My stomach pain is awful right now though, and i am lost for what to do for it. My doctors have given me some tylenol 3's for pain, but i don'tknow that they work at all, so i'm trying not to take them. Although they do help firm up my BM's so i'm not on the can all day every day......Not that it worked today.......
 
J

Justicexhaze

Guest
Club member 8751212

Man it's been killing me. 43 yrs old. Diagnosed with crohns when I was 7. I have had two resections and now have a damaged liver-I believe from the large dose of immuran I was on for 8 years (200mg a day). Sleep? 2 hours up 2hours up toss and turn up. went to bed at 3:30am this morning, woke up at 5:30-looked at the clock till 7. Now I am up. Anger, depression, zombie, mood swings (and I'm not on predisone). I take 200mg of Welbutran, up to 2mg of xanax 30mg Tamazapam(for sleep-aaahhhhh yeah), 10mg propananol, 40 mg shots of humira every two weeks, cumadin (for blood clots on liver) and Vicoprophrin 7.5/200 up to 5 times a day. Its like the little night demons...less sleep=more pain...and the pain pills dont knock me out like most people...they dont wire me either...I am affraid to tell them anything because I dont want any more meds...I take enough as is and my liver cannot take much more.

ps-grew up in Columbia, MD....I don't miss the snow...got down to 55 last night!
Port Charlotte, FL :)
 

mwb3779

Kitchenhawk
mwb3779 said:
So I have been up now for 36 straight hours. I'm not tired. Not even a little bit. My body though just wants to give in but I just lay there, awake. Sit there, awake. So I'm just trying to push on.
So I ended up being up for a total of 41 straight hours. :( Totally sucks. I just tossed and turned the last three hours hoping I would just pass out. I fell asleep somewhere around 7 or 7:30 am. Woke up at 1:45 pm. About 7 hours for almost 2 whole days with absolutely no sleep. I hate this so much. The dr wanted to start taking Trazadone to help knock me out at night. So far, no real luck. Does anyone know if you need to take it with or without food? I gotta do something. This is destroying me. I can tell.
 

imisspopcorn

Punctuation Impaired
Hey there Mike...Are you still up??? Did you google Trazadone? It's an off label use for sleep....It's mostly used for major depression. Research it further. I don't think you will get a rapid, lights out, kind of effect with this med. But it is good for chronic pain and depression. You just need to be on it for a few weeks to build up levels.....Sorry man...Tell him you need a few days worth of something that will knock you out....Restoril is one that knocks you out , but it can be habit forming so most docs only prescribe it for a few weeks.
 
Sorry to hear that Mike. I just took some ativan, hopefully that will help me relax, i'm a little worked up about my GI appt. tomorrow, very concerned that little will come out of it.

Wishing you sweet dreams!
 

mwb3779

Kitchenhawk
imisspopcorn said:
Hey there Mike...Are you still up??? Did you google Trazadone? It's an off label use for sleep....It's mostly used for major depression. Research it further. I don't think you will get a rapid, lights out, kind of effect with this med. But it is good for chronic pain and depression. You just need to be on it for a few weeks to build up levels.....Sorry man...Tell him you need a few days worth of something that will knock you out....Restoril is one that knocks you out , but it can be habit forming so most docs only prescribe it for a few weeks.
Unfortunately, I am still up. I was laying here in bed trying to sleep. No luck. At least not yet. I will say that if I was able to work, I might do 2 full time jobs again. With this amount of sleep I get, why not? I may go back to school (online) or get a part-time something. My whole body hurts. When I did wake up today, it felt like my back was trying to force its way out through my right side and stomach. It really sucked. I used those icy hot pads and the oxycodone for it and it took about 30 mins and I was starting to feel relief. I'm wondering where the whole body pains are coming from? I get the stomach, butt, sides, and hip/ joint pain. Its weird, sometimes I just feel broken. I mean the easiest thing in the world to do- go to sleep- I can't do it.

On a plus note, I do feel a lot better when I'm in the kitchen cooking or whatever. I like to make all kinds of food, unfortunately I can't try some of the things but it happens. :/
 
Hey Mike - you are WELCOME to come to my house and cook ALL NIGHT LONG for me buddy - I'll provide you with whatever supplies and food you need :O)

So - it is no fun being on pred - having insomnia and staying with friends for days and days. I wake up at 3:30 (I know - at least I had 4 hours of sleep) and just lay there wide awake not being able to get up and move around so I wouldn't wake anyone up.
 

farm

Captain Insaneo
Peaches said:
Hey Mike - you are WELCOME to come to my house and cook ALL NIGHT LONG for me buddy - I'll provide you with whatever supplies and food you need :O)

So - it is no fun being on pred - having insomnia and staying with friends for days and days. I wake up at 3:30 (I know - at least I had 4 hours of sleep) and just lay there wide awake not being able to get up and move around so I wouldn't wake anyone up.
Sorry Peaches. :( Hopefully it won't last long for you!!
 

mwb3779

Kitchenhawk
I'm sorry Peaches. I know the thrill of no sleep. I am still up from the night before. :( I don't get how my body is still going after 72 hours and only 5 of those being sleep. I did get some melatonin today though. 3 mg? Any ideas from anyone how many to take, best time to take them, will they interact with any of my other meds?? It says on the bottle not to take it if you show auto-immune symptoms. I welcome any advice or anything.

I do like to cook. Today I'm gonna learn how to make old-fashioned rice pudding. I tried some for the very first time the other day and it stayed with me very well. :) Very good too. I'd be happy with cooking for any of you. I also like to clean the kitchen, take out the trash etc. You'd figure with some skills, I'd have a girlfriend. For some reason I've gotten picker in my old age.
 
S

Slandur

Guest
Miss Rose said:
Thanks imisspopcorn - just ate some chocolate too and have a pain in the belly - bummer.
Chocolate will not only give you belly pain, but the caffeine in it will make you poop AND keep you awake!




I'm joining this club. My friends don't get it, and make fun of me because I "sleep" for like 12 hours a day, but it's usually from 3am-3pm... albeit, I've gotten very good at being able to get up, take a dump, and then get back in bed and fall back asleep, but it is still very difficult to wake up and feel refreshed, even after that many hours of laying down.


My personal sleeping techniques (that sometimes do or don't work):

1. Watch THE SAME movie. For me, being a poker nut, it's Rounders. I know every line from this movie, and can recite it to you because, let's be honest, i've gone on rushes like this before... but i won't do it. I think it helps my brain go on autopilot. And if you watch the same thing everytime you want to go to bed, eventually you can train your brain to get sleepy when you put the movie on.

2. Smoke weed. I know some of you are against medical marijuana, but it's not just for appetite anymore. If you could choose, you want an Indica strand, which will make you sleepy. Sativas are the ones that keep you awake! ok, lesson over.

3. Ummm... I don't really know how to put this one... but if you have sex with another person, or yourself, the release of chemicals that come with orgasm will help relax you and help you nod off. It naturally releases enorphins.

4. Try to NOT eat. Drink a glass of water. I don't know how many of you have tried a no carb diet, but after you have not eaten them for a long time, when you do eat them again, you get very very tired. Carbohydrates can help you, and maybe even the tryptophan in turkey can as well, but for the most part, the less you eat, the less that radioactive volcano you call a stomach will be ready to blow.

5. COMFORT. I know this is obvious, but seriiously, if you are normal, it's a third of your life! Spend the money. Get a new bed. Get new sheets. A new blanket. New pillows! Pick everything for yourself. Seriosuly, when you go to bed, it helps to have the same bed, the same pillow, and the blanket every night, it's all about training your mind. Keep replicating the same conditions every time you sleep!

6. REPEAT! Another part of sleeping... make sure that when you go to bed, sleep is the only thing you do in that room! If you have a computer in your room, it will distract you. I know firsthand that your room can quickly become your batcave. You end up doing everything in that room. Try getting ready in the bathroom. Do your homework at the table. Do everything you can to keep all of your everyday activity OUT of your bed!



I hope this helps some of you out there. If I think of anything else that helps me sleep, I'll let you know, even though sometimes nothing helps.
 
Mike, when i take Melatonin i started with one, but now i take three.
I don't know unfortunately if it will have any reactions to your other meds, or the reason for not taking it with Autoimmune conditions...i know my mom has MS and is also not supposed to take it. Maybe check with your pharmacist?

Another thought, if you go to a health food store in your area and explain your sleep problems, they might have some suggestions. I know there is a spray you spray on your pillow that is supposed to work really well
 
S

Slandur

Guest
Miss Rose said:
still awake, still awake, still awake arrrrggghhhhhhh

Chamomile!!!??? Hot shower?!?!! I'm running out of ideas! it's only 11:17pm here in new york... :ybatty: good luck miss rose!
 

mwb3779

Kitchenhawk
Good news and Bad news

First the good. I took melitonin for the first time last night 3 mg pill. Along with the Fluoxetine and Trazadone. I slept at night for 7 hours (11pm- 6 am). Yea! I was up for 2 hours and then took a nap from 8am- 12pm. Got up again.

Now the bad, the pains have returned. Its so bad right now, I'm laying down again with pain killers to make it go away.

Maybe I'll get back to sleep for a little while longer. I do need to "catch up"

All I want now is a middle ground.

Thanks for reading my rants.
 
I find my problem is I can't relax my mind. I am tired but just can't get/stay asleep. Even after taking a couple of percocets I feel relaxed and tired, but my mind is racing.

Can't stop thinking about work, what I need to do the next day, etc. Now I am back on prednisone and I am afraid it is going to get worse.

Insomina and fatigue associated with this disease and the drugs really sucks.
 
Mike, i'm so glad it worked for you! It deffinately does sound like you have a lot of sleep to catch up on, hopefully soon! :) Sorry to hear about the pain being back though...I know how much a bummer it can be!

I had a pretty rough last night...Was exhausted and went to sleep around 11, only to wake up at one....and have been up since. I'm having so much pain i'm hovering on the edge of going to the emergency, but i always find that is so exhausting, and i end up wishing i had never gone, because they don't do much.

Anyways.....Hopefully i can get some rest tonight, i'll probably try the drug induced coma. I really want to try to get things turned around by christmas, although if this D doesn't let up i'm not going anywhere! :)
 
Mike - glad you were able to knock out for a while!! I finally got about 6 straight hours last night since being on the pred - and it was NICE. I get a little crazy when I don't get enough sleep as I am used to getting a solid 8 hours every single night. I started feeling like I was strung completely out! No fun for the family....

To add to Slandur's suggestions - I use a white noise machine every night. Normally I turn it on and within 10 to 15 I'm o-u-t - my brain knows that noise and just responds to it. It has been harder since I have been on the pred - but I've been sleeping in strange beds on vacation the whole time to, so we'll see what tonight brings for me.
 

mwb3779

Kitchenhawk
I use a white noise machine too. I have for many years. I lived in Seattle for so many years, I can't sleep unless I hear the rain. Rain is my favorite.
 
I use waterfall. I am completely addicted to it - have several as backups and for travel.

OK - I don't want to cause anyone pain here - but I just woke up after almost 10 hours straight of sleeping! I feel like a new woman - am ready to conquer the Christmas Eve world!!!! I'm hoping I just needed my own prissy bed to sleep in (with the sound machine and the humidifier - God, I feel like Maria Carey or something!). Wishing everyone at least one night's sleep like that before the new year comes in.
 

imisspopcorn

Punctuation Impaired
The water noises make me dream about peeing.....I use the fan for white noise...

I'm glad you are sleeping Peaches.
 
Grrr, i'm so stinking tired! I just want to sleep....LOL. I've given up on trying not to sleep during the day because it doesn't make any difference....For some reason i can only get 3 hours at a time, but can usually manage to get one 'nap' in the evening, and then in the late morning.

Going to see the doc tomorrow and hopefully he can give me something to get some sleep.

How is everyone else sleeping? Did you manage to enjoy your holidays?
 
I think my membership can be renigged at this point. I've been sleeping fine sine I went down below 20mg on the predni--zone and am back sleeping in my own bed. In fact, I could take a nap right now and STILL sleep a full night tonight. Ok - maybe I can still be in on the fatigue side of the club ;)
 

mwb3779

Kitchenhawk
Tamesis, let me tell you- definitely give up on not sleeping during the day. I had too. Sleep when you can. That's what I do now. Have you tried melitonin? It works pretty well. At Costco its cheap like $4 for 400 3 mg tablets.

I can sleep here and there. I had an ok Christmas. How about you?

I voted for just insomnia at the start of this. Now I am both. Totally sucks. I fell asleep around 3 or 4am this morning. Woke up at 9am. Had no energy for a couple hours, ate something. Had just crazy energy for an hour. Now its back to no energy. I hate this too!!
 

mwb3779

Kitchenhawk
Peaches said:
I think my membership can be renigged at this point. I've been sleeping fine sine I went down below 20mg on the predni--zone and am back sleeping in my own bed. In fact, I could take a nap right now and STILL sleep a full night tonight. Ok - maybe I can still be in on the fatigue side of the club ;)
Its an either or both club.

Membership still in effect. Sorry :( Glad your sleeping better though!
 
Peaches, i'm happy to hear that you're sleeping well! It's hard for the body to heal when it's not sleeping, that's for sure!

Mike, i have tried Melatonin, even with 3 tabs and an ativan i only sleep for a few hours....The pain wakes me up though, and i have nothing for pain control, so by the time i am able to take a bath and breathe through it, i'm wide awake and can't sleep.

It was really frustrating when my Hubby was off work for the holidays, because i felt bad for sleeping all the time instead of spending time together. Then, with all the family stuff going on it was hard to get enough rest. Now that the holidays are pretty well done i should be able to get over feeling guilty for sleeping all the time.

Christmas was alright....I was trying to be positive and enjoy myself when with family, but it was hard because i feel pretty rotten. I was spoiled though, and enjoyed visiting with family, so all in all it was pretty good. :)
 

imisspopcorn

Punctuation Impaired
Now that I have gotten my Remicade, the fatigue is gone....When my dose wears off I will see if it is the med or not??...I still can't fall asleep, but I have been sleeping in late since the kids don't have school....
 
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