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am I crazy? always tired

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Crohn's Disease
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Posted 9/13/2007 6:09 AM (GMT -6)
So I have been trying to get used to having Crohns since being diagnosed almost a month and a half ago. I too mourn my "old" life but I am trying to just live through it but some days are harder than others and is frustrating. I love this site because I am able to learn so much but I haven't found anything on this subject so I thought I'd ask.

I am getting used to the not eating that much, the eating better so as to not "aggravate" things, the constant dull pain 24/7, but I'm not doing to well on the "general malaise/fatigue/tiredness" factor. I sleep between 10-14 hours a day (3-4 of those hours are for naps after I make myself go out and about=running errands or to prepare me for my shift at work) and I STILL am tired. It is really frustrating me because I don't know what is causing it and if this too will become a permanent fixture in my new life.

Are you tired too? Is this another part of this lovely disease and if it is, what do you do to gain energy? Do you get your energy back when you are in remission?

I have a friend that has an autoimmune disorder (they haven't named it yet but she's had it for 2 years) and she gave me a B shot and I felt somewhat better so I asked my regular dr in August if I could have B shots. She was on a long term vacation so another doctor replied and said I would have to take a B test to see what my levels were. So I took it and it was 460 out of the range 290-900 something. Which meant NO to the request. I bought sub lingual B tablets anyway and started taking them in addition to my prenatal, probiotic, calcium and magnesium, vitamin C, omega 3, and dietary enzymes hoping I would get the same effect but it doesn't seem to be working like the shot did.

So yesterday after almost a month of trying to wing it, I emailed my GI doc and asked him if I could have it and he said no. Instead, he is going to order a thyroid test to see if my thyroid is the problem. I really REALLY don't feel like hearing about another body part going out on me, but I also want to be affirmed that I'm not crazy.

I now feel like I am becoming a hypochondriac but the fatigue is so real I don't know what to think anymore.

suggestions.... thoughts???? confused confused
Posted 9/13/2007 7:00 AM (GMT -6)

Hi malakai,

When I was diagnosed last year I felt frustrated.  I couldn't believe that I had to live the rest of my life with a chronic disease.  When I was released from the hospital, I started crying every night, I wanted my life back, I wanted to be a normal person again.  Then I started feeling tired.  I wanted to sleep all the time.  I could sleep up to 15 hours a day.  I was getting up in the morning, drive my children to school, go to work, and then go home and go to bed.  So, I decided I couldn't handle the situation on my own, and visited a phsycologist.  After many discussions with her, I realised that I liked sleeping because that was the only way I didn't have to think about my situation, and my feelings.  I started taking some anti-depressants.  After several months, I started feeling better.  I realised I couldn't live my life being miserable, and making my family's life miserable too.  So basically the fatigue is gone now.  I still have days when I'm feeling down, maybe cry sometimes, but it's not on a daily basis.

What I want to say is that if your blood work is OK, then most probably you need time to understand and accept what's going on.  I know it's not easy, but we really don't have any other choice.

Christina

Posted 9/13/2007 7:21 AM (GMT -6)
Hi there
I am tired as well most of the time and I do believe it stems not only from this DD but also the depression that may and usually does go hand in hand with Chronic Illnesses........

Have you had Thyroid checked at all .....I did yet it was okay but still have to have my nap in the pm if only a lil cat nap to get awake again....plus the pain meds I am on make me very tired too

At night I sleep a solid 4 to 6 hrs with Trazadone and a hot milk .........that sure helps

I wish you all the best and let us know how you are doing k

LYN
Posted 9/13/2007 7:22 AM (GMT -6)
This is definitely a disease that causes fatigue and not just because you're "depressed" about having a chronic illness. The physical symptoms of this disease are a direct cause of the tiredness. 

I have fatigue on days when my CD is flaring - sometimes I have the fatigue even after I've had a regular BM.  Sometimes I'm SUPER tired (can sleep over 10 hours) to the point I can hardly keep my head up.  Other times I'm just not myself because I'm a little sleepy.  But on days when the CD is leaving me alone, I'm not too tired and feel like I could conquer the world (I get a lot of stuff done on those days!).  For me, it all depends on the day and what the CD is doing that day.

Yes, depression and overwhelming anxiety about having this illness will surely cause you to be tired because fatigue is a physical symptom of depression/anxiety.  But the fatigue isn't ALWAYS a depressed/mental thing...it most surely can ALSO simply be due to the physical aspects your body is going through with the CD as well.

Posted 9/13/2007 7:37 AM (GMT -6)
Maybe since your family doc was on leave you should wait till he/she gets back and talk to them about the B12 shots. They really help me alot, and my B12 levels are normal too. I am actually finding that the shot is only lasting about 2 weeks now, so I might ask my family doc if he will give them to me twice a month instead of just once. This disease by itself can really run you down. Good luck and hope you can get the shots, I think we all should.
Posted 9/13/2007 8:32 AM (GMT -6)
Such a good doctor you have, Nanners!, normal B 12 levels and still your doctor listens to you and gives you B12 shots, which apperantly helps you a lot. Here in Norway the B 12 measures are ranged from 150 - 540 something, my level is 210 and I think it is in the lower part, but my doctor won't let me have B 12 shots.

So I am still tired all day, but not depressed. I agree with Kittikat - the tiredness could also excist because there is an inflamation in the intestines, and a flare could lead to increased tiredness.

From Ingrid
Posted 9/13/2007 9:00 AM (GMT -6)
Malakai, My disease came on so gradual that I just thought I was a lazy slug. I didn't realize just how fatigueing this disease really and truly is until after my resection and going into remission. I'm doing things I haven't been able to even comptemplate just a year ago. Walking to the mail box took too much effort and now I'm walking several miles a day. It is the disease that causes fatigue and not just depression. I still have bad days and I just have learned to listen to my body. If it says take a nap, I take a nap.
Posted 9/13/2007 9:54 AM (GMT -6)
You're not crazy. Unfortunately, severe fatigue has become a standard in my life. But it wasn't as bad when I was younger and had milder symptoms with some remission time. When the disease is in a good remission, the fatigue tends to go away.

It's a good idea to be checked for other underlying causes, but the Crohn's itself will cause this. B12 shots are usually only given (at least rightly so) if you have disease in the last section of the small intestine (or have it removed) where this vitamin utilized. Fatigue can happen without the B12 connection and is quite common with CD.

So, you're not alone in dealing with this, and it IS frustrating.
Posted 9/13/2007 9:59 AM (GMT -6)
I asked about B12 and they did the test on me too.  It came back fine and after months of being totally exhausted, the doc gave me one and now I will be getting one every month with my Remicade.  He said even if your levels read fine, Crohn's is so hard to measure what vitamins I am really getting and said it would be fine if it made me feel better. I only felt the energy for about a week, but maybe next month it will last longer.
Posted 9/13/2007 11:36 AM (GMT -6)
thank you all for your replies and sharing your experiences. They really were a comfort to me. Yeah I'll wait until I can physically see my normal doctor. I finally called into the office just now and asked where she has been since the middle of august and they said she'll be back in a couple of weeks--fam emergency. What's another couple of weeks--I've waited this long right? =0) My friend Turie (the one that gave me a shot) told me she too had normal B levels but her naturopath and Rheumatologist told her to do the shots anyway.

As for depression, I am bipolar II and am already on meds and have been depressed before but this seems different. When I'm depressed, I'll tune out my surroundings and "sleep" it off and be mopey tired all day but if I chose to get out of my funk I could go and do something no problem.

In this case, it's like a perpetual body flu tired feeling. My mind is thinking of all these things that I could go do but when I actually do them, ie walk a couple of blocks, have hot water with a friend (they have lattes), go to the library and pick up books, go grocery shopping, I can only do one thing and then I have to go right home and lie down for at least 3 hours because I'm spent. When I get up, I'm a bit more refreshed but the body tired is more prominent than before I went on my little travels so I'm basically homebound for the rest of the day.
Posted 9/13/2007 12:30 PM (GMT -6)
I too am perpetually tired. I sleep about 10 hours a night and come home for my lunch break and sleep another 45 minutes, this is usally followed by another nap at night. I am on Lexapro for depression and Xanax as needed. If you think about it, having diahhrea 5+ times a day would make anyone tired. Our bodies are being drained of nutrients, not to mention the mental stress.
Posted 9/13/2007 12:43 PM (GMT -6)
Hi, sorry about the fatigue. I went from going non-stop 5 am to 11 pm 7 days a week to barely being able to make it through 4 hours w/out laying down. When I started on Imuran my energy level increased dramatically. I think it was because the Imuran forced my body to stop fighting so hard against this disease. What works for one might not work for another, but just keep trying different things to get your energy up. I hope you're at least having sweet dreams!
Posted 9/14/2007 7:20 AM (GMT -6)
I know what you are going through! Fatigue is probably my main complaint right now. My husband thinks that I am not drinking enough liquids and that is the reason; I think that my main med, Imuran, is causing it. It's probably a combination. But it stinks!
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