Extreme Fatigue but Normal Iron Level?

[Liverpool FC]

Hi all, having finshed steroids almost 3 weeks ago and being on aza for almost 6 weeks I find i can barely keep my eyes open at times. The odd thing is it isn't like a yawning sort of tired, more the blurried/blinking eyes you get from tiredness and the feeling of your brain being way slower than normal.

Its hard to explain but I find I forget so much (never ever used to be like that till Crohns started to really make its presence felt) and quite frankly at times it feels like i'm losing my marbles. Really worrying at any time but especially at 22.

I've been getting the weekly blood checks for the aza anyway so went to see the doctor to say about this tiredness and my iron was 14 and wouldn't really need to be much higher. I know my iron stores were very low before i started treatment- perhaps it is still low and i've had 6 b12 jabs a month ago. I'd have thought having started treatment i'd feel at least the same or better. In most other ways its a big improvement.

I know there was a thread a while back about putting a cooker on and forgetting about it and it sounds like the sort of thing i'd do.

Its really frustrating and worrying because a few years ago i was so observent and could remember little details about things, this has gradually slipped but is now woeful and it makes me feel so stupid :ybatty: whch is made worse by the fact i know i shouldn't be like this... Maybe this should be in the vent section... lol.

Please allay my fears by letting me know i'm not losing my mind or that someone has came through to the 'other side' of this situation

 

[Aussie]

Hi Liverpool,

Serum iron is a crap test for the amount of iron in the body - ask whether your ferritin level was normal. Also, ask your doc whether you're anaemic, which might be contributing to your symptoms. I'd also suggest have your thyroid function checked, if your thyroid is underfunctioning it would cause you to feel that way.

 

[Rebecca85]

I know exactly how you feel- I can manage till about 2 or 3 oclock most days than bam! I can't see straight, feel like I'm swimming in treacle when I try to move. I am not anaemic, so don't need b12 or iron. It's just a sign that my Crohn's is not yet in remission. The fatigue comes from the fact that your body us using all its energy tonfirst create inflammation and then fight it.

Don't forget aza can take about 3 months to feel its full effects. So hopefully when the aza kicks in fully the fatigue will get better.

 

[planetjen]

i had a few weeks of extreme fatigue after getting off steroids. i had been on a very high dose then tapered down, and the month after i tapered off i barely dragged myself about. poor health and battles with powerful meds can totally suck away my ability to think coherently and maintain emotional balance. it passed in time as my body recovered. your sharp abilities are still there along with all your IQ points. your body is just forcing you to reallocate resources for a while.

 

[Aura]

I have been extremely fatigued recently. It was affecting my driving I was falling asleep at the wheel with no warning. I wasn't yawning or anything. I am working from home at the moment. I have started to take Fortisip drinks and I find that my energy levels are being a bit more stable. I am going to see if I can get them subsidised from the government. My Ferriten is low as is my Vitamin D, so that may be contributing to it. I hope you find the reason behind it. Just so you know, it may feel like you are losing your marbles, but soon you will find them again.

 

[Entchen]

I hope you guys are right about the lost marbles coming back. I have written exactly 1/3 of 1 lecture in the past week. Eek. And there are lots of mistakes. My attention span is approximately that of a squirrel, which is to say about 1 second (unless focused on nuts -- or in my case, a frozen hot chocolate, in which case the span increases to about 4 minutes -- see, I've done my research!). I used to be able to do 16 hour days if I needed to get a lecture or a paper finished. I'm exhausted but too short on attention to just sit on the couch and rest much of the day (and the rest of the time, I'm asleep). I can get out and exercise for a short time several days/week -- which is a VERY positive change -- but then it wipes me out and I can't do anything else the rest of the day. I've taken to exercising at suppertime so that I don't lose an entire day. But, I have no idea what I'll do in August when I start working again -- I can't give up exercise because I am still gaining weight (grrr), but I'm terrified I'll be too tired to manage both. I have instructions from my family doctor to discuss this with my GI (appt. in early August), because my iron is continually dropping despite the use of supplements.

 

[bushydougie]

The only drug I'm on at the mo is Asacol as I'm yet to be diagnosed but yet I am still plagued with awful fatigue. It's driving me crazy. I don't know from one day to the next how I am going to be so I have not been able to work (I'm a Nursery teacher so need loads of energy!)
Kelly - Like you I try and do some exercise (just walking though) and afterwards feel wiped out and have to rest/sleep. I totally know what you mean about lack of attention too and find myself wanting to do too much which then exhausts me. I don't think I understand what my limit is yet!
Does anyone else suffer from insomnia too? Im sure this doesn't help.
Sam

 

[Entchen]

Hi Sam: Thankfully, no insomnia for me, but I am aware that a number of others on CF do have this challenge. I agree that it would make it extra difficult!

 

[89deuce]

Well, I'm glad to see this post more than almost any other post. I have had crohns for abouttt 4 years now and I am about the same age, 25.

LUCKILY, I don't have many symptoms now except for the occasional diarrhea and loose stool and what not. Occasional bleeding and from what I understand all fairly normal symptoms when you are still having light flair ups and what not.

Anyways, my doc pot me on Pentasa and I was taking 2 pills 2 times a day. It actually seemed to stop me up more and seemed to make me a lot more tired than normal. Eventually I stopped taking them because I lowered the count of pills via my input to my doctor and her suggestion to go ahead and try it and see what happens. I started getting off them and basically haven't taken them for about a month.

Now FINALLY comes the comparable part I guess I could say I am excited to read. Because now I know its not JUST me.

Lately I have been seriously blurry visioned tired no matter how much sleep I get. I just started work 2 months ago and its starting to really effect my work as well. I was so tired today and could barely see my computer screen I was that tired... Its to the point where I almost went home from work today. I wake up and feel somewhat normal like its just morning tiredness but its that kind of tiredness that is now normal no matter what time of the day to me. Then afternoon comes and its ALL OVER. about 1-2 at lunch time I take my hour lunch that I requested be an hour so I could basically take a nap. Its a tiredness that I cannot explain like the OP is talking about. Its such a tired and fatigue that its hard to literally function or even wnat to talk at points IMO haha. Its hard to explain but yeah I think you guys get it...

My blood levels are normal and I get it tested every three months since insurance pays for it. I have had my thyroid, iron, and all other things tested and they can't figure it and just say they don't know why...

Could this be because of our immune system going crazy and just draining our bodies?? Thats all I can think of since when I first was diagnosed with crohns was because of extreme tiredness and light headedness they said was probably because of a freaking out immune system.

Sorry for the long post btw lol

Oh and btw like the op said a, "the other side" post would be insanely positive to me at this point since I am almost out of options.

 

[Crohn's 35]

Welcome Deuce! Glad you found us, and I almost missed this post, most people dont realize to open your story and journey on Your Story thread and everyone can meet and greet you. Our admin can move this for you. Goodluck!

 

[stussy]

I am on aza and asacol at the moment, and at the mo im at my desk yawning and having trouble keeping my eyes open, the last few nights ive been asleep by 9.30 and struggling to get up at 8 - is there such a thing as too much sleep :lol: also my brain is frazzled, it wont turn off worrying about stupid things i dont need to & forgeting stuff i shouldnt .. very irritating

 

[89deuce]

lordy its like deja vu I have been getting to bed at about 10-11 and waking up at 7:30 for work and I'm still exhausted. Got me a appt with the gi next week im hoping she can say something positive or get me on something else. Either way this is the suck

 

[Liverpool FC]

Aussie: Ferriten level (if that is what iron stores are called) was checked today so now awaiting the results.

Rebecca85: i've been on aza for 6 weeks so maybe patience is required, sorry to hear you're the same, but at least we know we're not alone

Planetjen: I have only been off the pred for about 4 weeks so maybe it is the side effect of coming off them.

Aura: I don't know how I will find my marbles again, I think i wrote down where i put them, but I can't remember where the note is! I'd love to get on the fortisip stuff, to gain a bit of weight if nothing else.

Kelly & Bushydougie: hope you get your iron stabilised at least Kelly, my attention span is shorter too and you try to force yourself to concentrate which makes you think of concentrating which then turns into a day dream! lol.

89Deuce: Firstly Welome! Are you on any medication now that you're off pentasa? I could never get to sleep during a lunch hour cos i'd constantly be looking at the clock, thinking ok if i don't get to sleep soon i only have half an hour etc, until its over and all i've done is watch the clock! I have an appointment soon too, so hoepfully we both see some progress.

Stussy: Don't know about you, but its so frustrating that you battle into work, do whatever you do, head home and you just want to flop out on a chair when you should be able to enjoy your evening doing whatever you want.

 

[Rebecca85]

Liverpool- cat a tonic mentioned salt levels to me earlier, I just had a drink of Bovril (salty chicken stock) and I felt perked up within minutes. So try eating or drinking something salty and see if it makes a difference for you too!

 

[Entchen]

And I do love my daydreaming, Liverpool! Hee hee. I'll happily spend half a day daydreaming sometimes, but when work needs to be done, I expect myself to be able to do it.

 

[Aura]

Hi Liverpool,
Fortisip is imported, not a surprise it comes from a company Nutricia N.V, Zoetermeer, The Netherlands. I like toffee/caramel; vanilla and strawberry. I have tropical to try soon. UK call number is 08457623653 or for ROI 1800923404. The UK address is Nutricia Clincial Care in Trowbridge Wiltshire. I hope this helps, these drinks are really yummy. Let me know if you want the average contents information. In Ireland Nurticia Ireland ltd, in Dublin.

 

[Chrismac]

Oh goodness, that is exactly me, too. I am also 25, I've been diagnosed for almost 10 years now..

Right now the fatigue is hitting me REALLY hard. I am in the middle (or I hope the middle, because at lease then I'm halfway through) of a flare right now.. and it's completely draining me. (Quite literally)
But yes, as well as draining every fluid and solid in my body it is draining my energy.. and I want to lie still and drink and drink and drink water... I am thirsty all the time it seems. Probably because of the D. Anyway, I'm off to bed, last night I went to bed at 10:30 and still only got 3 hours sleep! I am looking forward to sleeping tonight.