Crohn's and Insomnia

[mwb3779]

Hi my name is Mike and this is my first post. I do apologize if this comes out making no sense. Its 3:25 am and I'm tired but can't seem to get to sleep.

I sitting here at 3:25 am because I can't sleep. I recently read somewhere that prednisone may cause this. Is anyone else experiencing simliar issues. I have had this problem since being hospitalized last time (Nov 2009).

I'm on 20 mg of Prednisone down from 40 mg. I also take a sulfasalazine 1500 mg 3 times a day and 6mp 100 mg once a day. Plus a lot of others... (I'm also a diabetic, so meds for that too) I 'm really starting to hate this not sleeping bit. I'm 30 and just dx with Crohn's. I've had to move home with my parents just to recover. I have these good days and bad days. Pain is just a new constant in my life. Unfortunately I lost my job this year and my insurance. I'm really not sure what I need to do anymore. I've applied for state assistance but that won't help for hospitals and er visits if needed. I'm sorry this is just coming out everywhere and in all directions.

I'm just tired of a lot of this I don't know and maybe stuff about this disease. So many things on the web about it has answered some questions, but I still feel like I'm in the dark about so much. I am still experimenting with foods. I never thought I would miss veggies like this. Salad was a terrible idea. Sesame seeds are the devil. I feel like I can't go anywhere unless I know exactly where the restrooms are.

Can anyone help me? What should I do? What's the best step to dealing with this disease. If anyone has Crohn's and Diabetes please let me know what you're doing?

Thanks for reading

 

[Guestly]

Oh poor Mike - I know the feeling with the pred... was up late last night myself, and now my bathroom is cleaner than an operating theatre, you could eat your dinner off the kitchen floor, and all my windows are sparkling.... and yet I am exhausted.

Its an awful thing to get your head around, and I totally understand about the veggies - I never realised what a fan I was until they were taken away from me!

There are plenty of people here for you - and bound to be some with Crohn's and Diabetes who can give you some tips.

I hope things get better for you soon, and welcome to the forum.

Lishyloo x

 

[mwb3779]

Thanks Lishyloo, I really hope this insomnia knocks it off soon. Thanks for the welcome. I really like this set up. Seems to be one of the best I've found yet.

 

[Guestly]

Yesterday, after a sleep deprived night, I held out until early afternoon, then drew all the curtains, wacked the heating on, wrapped up in a heap of blankets with a hot water bottle and managed to get a few ZZZzzz's - I think the heat helps - or maybe I just passed out! Worth a try though - wrap yourself up like a caterpilla and see if you can catch up on a bit of sleep.

Lishyloo x

 

[mwb3779]

Yeah I know what you mean. I for some reason can sleep much better in the day than at night. I'm tired at night but my mind won't shut down. Its like I'm totally backward. And its true when I'm warmer, I sleep. I used to never wear socks to bed. Now I do. I wear pants not shorts and always a shirt with the covers up. But I still get cold and then I'm hot and then cold..... I take Ambein CR too. That doesn't work for me or at least it hasn't yet. Any other ideas?

 

[Guestly]

Right - the last resort... Women's trashy magazines... you know the type... Headlines like, "The Dog ate my lover's pants", and "I nearly died but didn't"... Settle in bed with all your duvets, hot water bottle etc, get the lights really dim so it's almost a struggle to see the page, and start reading... guarantee you won't get past the first riveting feature about some idiot and their mysterious psychic abilities.... you WILL be asleep!

My friend brought me a stack of them when I was in hospital recently... guaranteed snooze material... also makes you feel really intellectually superior when you realise how many total numpties there are in the world!

Failing that, a brisk walk? Even though you are pooped - sheer physical exhaustion can get you off for a few badly needed ZZZzzz's

Warm bath with lavender drops in?

Oh and totally with you on the bed socks... the amount of clothes I wear to bed is so not sexy these days - my poor husband!!!!

Lishyloo x

 

[shazamataz]

Hi Mike,Sorry to hear about your sleeping troubles. I have had that too, but it seems to be improving a bit as I drop the steroids (down to 7.5 now). The pred is great for giving you energy but hard when you KNOW you need to rest to get better. I never really found any solutions. Even the sleeping pills I was given would send me off but only to be wide awake 2 hours later!
One tip I have heard can help is to make sure you cannot see a clock. That way you aren't looking at it and being reminded of how long you've been awake for and how soon til you have to get up!
Your mind will be racing from the pred but also the new diagnosis - it can be all a bit overwhelming. Just be kind to yourself and if you can, nap during the day as Lishy suggested.
Glad to have you here
Shaz

 

[Pirate]

Hi Mike, welcome to the home for crohnies (other than the loo). I think a lot of us with CD suffer from insomnia at one time or another. I very seldom sleep more than 3 hours straight and never get more than 5 in a night. It was worse when I was on steriods.
I like Lishy's idea about the trash magazines. Works every time.
I hope things get better with your heath care coverage. I've been there before. Sucks when you meds run about $300 a month and no income. We had to fight to get help from Social Services just to get them covered.

 

[Sammas]

Have been on and off prednisone since i was first diagnosed 6 years ago, am currently on a tapering dose starting from 40mg daily. I love what it does for your pain BUT hate its damn side effects. I can handle the sleepless nights but i don't think i could ever get used to that awful edgy feeling. I find keeping your mind occupied really helps nothing too epic though (cant concentrate when reading books or magazines). Goin for a walk can really help clear your head, maybe go to the beach? . As for the not sleeping thing .... they only thing you can do is try and stick to a pattern of taking your prednisone the same time every morning so your body at least stays in rhythm and go to bed at a good hour. Even if you dont sleep its still good to rest your body. Relaxing before i go to bed watching tv, sleeping in a completely dark room and drinking herbal teas seem to have really helped me through the insomnia. All you can do is experiment and hopefully something will work for you. Best of luck

 

[mwb3779]

Thanks to everyone who replied. I will try some of those things. This really is a great way for those of us with this crazy thing to talk with others who know what its like. I have found it difficult to talk to friends and family who have no idea what its like. I wish my meds were 300 a month. Its more like 1000 a month. Still no fun. Hopefully with this assistance I can get from the state it will help a lot to get them paid for. I wish I just understood why this happens. Its so weird because some people say its not what I did, its in my genes. Then others say its how I ate how I lived my life up to this point. I just wish I knew. Thanks again for reading.

 

[crazycanuck]

Hey mike,

I am not on any of the meds you are on just Imuran but yes I have a lot of the sleeping problems too. I often will be wide awake at 1 or 2 in the morning just laying in bed. I used to be able to lay my head on a pillow and I'd be out but I have noticed that since being diagnosed I do have problems falling asleep a lot of the time. One thing I found that helped a lot though was that I am slowly getting out of shape because I haven't been able to do much in the way of activity lately (concussion problems) so I decided to start doing push-ups and sit-ups everynight. I found that when I start having these sleeping problems if I do those then I often feel very sleepy and fall asleep much much quicker. This only works of course if you are showering the mornings. A quick walk on the treadmill or something comparable may also work? Good luck and hope its as easy a fix for you too.