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Crohns disease, sleep and overall energy ( or lack of)

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Crohn's Disease
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Posted 2/8/2010 6:40 PM (GMT 0)
When I was diagnosed ten years ago, at the age of 10, my bed was my favourite place to be - and it still is. Is it just me, or do other people long for their bed at any time of the day, given any opportunity or is simply laziness?

When I was first diagnosed I was severely anaemic, and my bed was my only respite. I wasn't cold, I didn't have to struggle to stand up and hold my own weight. My bed was my comfort, the only place I felt safe. But that feeling has never quite gone away and ever since I crave sleep the majority of the time - through flare ups and remission. I guess it is partly psychological.

What I want to know is, how do I overcome something like this? Resisting the urge to sleep- when I feel tired most of the time and getting up early in the morning is torture. Don't get me wrong, it hasn't stopped me achiving success - I achieved excellent grades at school, A levels and will finish my degree in Psychology later this year. But, if I'm honest, although I have put so much effort into preparing for my future career, I just don't know how I will manage a full time job. The thought of it scares me and if anything, a work from home job would suit me perfectly.

I just wondered how the rest of you have adjusted/ gave in to lack of energy. Can we overcome it? Should we feel guilty about it? Or do we use it as an excuse. All I know is, I would love to have so  much vitality that 7 hours a night would keep me going all day.

Best wishes to everyone

SKR

Posted 2/8/2010 7:19 PM (GMT 0)
Do you get B-12 shots? They say that it will give you energy. I take them once a month but I can't tell a difference. Some people can....Maybe this will help you....
Posted 2/8/2010 7:32 PM (GMT 0)
I love love love my bed I am tired most of the times.
But sometimes I do have the odd energy.

Just before I got sick I bought a Tempur bed it is the best so warm and nice.

Last christmas I asked my family for snuggle related presents I got temprakon shoes, 4 big comfy blankets and 2 amazing pillows.
And an electric heating blanket.
Posted 2/8/2010 7:54 PM (GMT 0)
I've always tended towards inertia, long before being diagnosed with Crohn's. The difference was you obviously didn't give in to it, and I did, and my life has been a failure on every level because of it. Short of getting so tired that you can't stand or are in danger of a breakdown, I'd continue as you have been doing.

Just one suggestion. I don't know you at all, but could your tiredness possibly be down to depression at all? It's less likely with you because of the Crohn's, but otherwise inexplicable tiredness can sometimes be a manifestation of depression. You don't always get the obvious signs, such as crying all the time, suicidal thoughts, etc.
Posted 2/9/2010 5:31 AM (GMT 0)
You don't list any meds your on. I've suffered varying degrees of fatigue from prednisone and a 5-asa called salofalk (Canada) I've also had the opposite effect from prednisone lots of energy, little sleep. Your meds may be increasing a normal tendancy? Ask your Dr.s
Posted 2/9/2010 6:18 AM (GMT 0)
The disease clearly makes me tired. This latest flare has been the worst where it has taken me hours to get out of bed only to go lay down on the living room floor on top of the heat with a blanket. The psych stuff I will leave to you since that is your degree. I also second guess myself, am I too weak, too lazy whatever? I am trying to come to realize that I have done alright after so many decades with ibd. I look at co-workers who lie and use up their sick time while I have saved hundreds of hours working through minor flares and I GIVE MYSELF SOME CREDIT.

I think you should give yourself some credit. DEFINITELY set the bar for yourself a little higher but not so high that you make yourself ill. In your stage of life I think most of us are scared because it is getting very "real". Go out and make a living, a career. With CD on your back it will be more difficult. Be like "The Borg". Adapt and conquer. You will be OK judging by your performance the last 10 years. Good luck to you.
Posted 2/9/2010 12:52 PM (GMT 0)

I definetely think that CD in general makes you tired and have lack of energy.  I have had low energy for a long time.  B-12 was good and I was not anemic.  I haven't been on any drug long term.  The lack of energy had to be from the CD itself.  When I started Remicade all of a sudden I had so much energy it was like I was someone else.  I didn't want to look at my bed again.

Lately the Remicade isn't helping so much and I am very lazy again.  My Dr. might up the dose next week so we will see what happens after the next infusion.

Posted 2/9/2010 7:13 PM (GMT 0)

Thank you for your replies

There has certainly been times when the tiredness has been severely influenced by disease activity but at one point, I  did get very depressed and looking back I think that was the main reason why I couldn't be bothered to fight, and consequently I stayed in bed a lot.

But on the whole I still find it hard to resist sleep whether that be because of Crohns, or down to habit and not always influenced by mood. I guess you are right to set the bar higher, but not too high. Not pushing ourselves too much.

I am currently on Infliximab, methotrexate and mesalazine. The infliximab helped my energy immensely and rescued me from my last flare up but I do notice that methotrexate does drain me, particularly the day after injection. I'm good for nothing. But after recently trying to come off it but having to go back on due to deterioration, I don't think there is a lot I can do about it. Maybe B12 injections are something I could definitely ask about

I guess we just have to accept that we are never going to as energetic as 'healthy' people but still give things a go. If we can't cope, then so be it but at least we tried.  BUT the thought of working, running a house and potentially havin children scares me such a lot!!!

Thanks once again

Best wishes :)

SKR

Posted 2/10/2010 4:36 AM (GMT 0)
QUOTE " BUT the thought of working, running a house and potentially havin children scares me such a lot!!!"

Kindergarten probably scared you too! You handled that and every responsibility since. Your post above shows you as a pretty together person. I'm not a betting guy but my dollar says you will shine.

Many blessings
Posted 2/10/2010 2:20 PM (GMT 0)
Hey SKR,

I am currently in remission but my husband and I often joke about me needing a nap before I go to bed. I fall asleep on the couch just about every evening after work. My husband wakes me when its time for me to get up and shower and then I go to bed and am asleep in no time. I just think its the nature of the beast.

Hugs'
Gail*Nanners*
Posted 2/10/2010 3:39 PM (GMT 0)
you know it depends where your cd is, as far as your energy level is, I was a horse jockey with my cd, remission after first surgery1970, then went back to riding 1972, I've always have been thin so that helps in energy, I rode until 1991, broken neck ended that, but alway ran,mountain bike, hike, always active and I really think that helps, mind you when i was really sick in 1970, I was to sick to do anything, but once they cut out disease area, I was good to go. If you can walk, it helps in digesting food

Posted 2/12/2010 3:56 AM (GMT 0)
I've always been a night person even before i got sick. But now....its almost impossible to wake up in the morning. Morning stomach pain and joint stiffness. Every day I contemplate why the heck i'm going to work. But I know I can't quit $$$ and health insurance. I don't think I would even function as well being stuck at home all the time. When I was bedridden I longed for the days I had energy and could go go go. So too much of a good thing is not good. So going to work all day makes my bed that much more desirable. I have a tempurpedic too! luv it!
Posted 2/20/2010 2:31 PM (GMT 0)
yeah Yes fatigue is always with crhons. Since my second surgery i was told to take b-12 shots the rest of my life because i don't produce it . once a month, I have to say i do notice by the third week. I'm so so tired. I also take multivitamin, stress tabs with zinc, fish oil, calcium. But most importantly when i do feel so tired I go with it, I use to feel guilty about laying around tired all the time feeling depressed, but if your tired your tired we all take meds that sometimes does it too. So I give myself that break. But when that happens i read uplifting books or movies and things to make you laugh. I it will eventually pass for a time then you can really make the day count when your not quite so tired.
:-)
Posted 2/20/2010 3:30 PM (GMT 0)
To all of you tired and not on B-12, please have your levels checked!
I was feeling the same way...had my levels checked and now know that I need to be on B-12 injections, the pills were not working even in massive doses. I have since had my b-12 injections increased cause I started to get tired in the 3rd week (dr did not think I needed to increase them), but since you can not over dose on it ( it just comes out in your urine) i am now taking 1cc B-12 every two weeks. I can not tell you how much this has helped. Before the injections (when I was taking it orally) my routine was to get up, go to work, come home, sleep, wake up, eat dinner, shower, go to bed. On the weekends I was taking "naps" that were 4-8 hours in the middle of the day as well as getting a good night sleep and sleeping in as late as I could get away with. I was starting to feel lazy and depressed because of this. Most of the people around me really thought I was lazy and unsocial. Now (I still like my sleep) but I don't have to take my naps, but I can if I want....lol.
Good luck all
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