Tired, stressed and fed up

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beth

Joined
Mar 4, 2009
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So, for quite a few years, and before being diagnosed (jan 09) with Crohn's I've gone through bouts of what I call 'tired all the time', with no apparent cause, but have managed to 'manage' it to some extent. But since february when I went on a week long outdoor course and got myself utterly exhausted I only had a couple of short periods when I've had any energy at all. The last few days have been particularly bad. A couple of days last week I basically slept through, all day and all night. Whenever blood tests have been done they have been okay, nothing markedly wrong.

I dont want to shrug and give up at this point and say 'its the Crohns' and just accept it...

Does this sound familar, and have you found any way of getting some energy back more than say a caffeine hit gives?

Does munching multivitamins help, or anything else?

(I think the last few days is not being helped much as I'm in that part of my cycle... which as I'm on HRT is artificial anyway. So I could not cycle my hormones, but that brings other issues. Sigh.)
 
This is something, I think we can all relate to.

But, for me, it generally coincides with a relaps of Crohn's symptoms.

If you were only diagnosed in January, you body won't have fully recovered yet. Give it a bit more time, if you're in remission for a couple of months, your body will start to get more "Normal"
 
Thanks Dan. Thinking about relapse; I did have some sheep/goat's milk cheese earlier last week, which we thought would only upset my asthma, if it was going to do anything. Which it did :( Maybe it has upset my absorbtion of Good Things. So pushed me over the 'energy edge' too. double :(

Even before that tho I've been able to do stuff for a day or two, then Bam, energy reserves hit rock bottom.

I've been getting pretty stressed about starting azathioprine too - not allowed until my consultant is back off hols in case of problems. Which never helps. And Paul is getting twitchy about the time I've been unemployed - now 18months. Which is adding to my stress because he's stressed. :(
 
Have you had your B-12 absorbtion checked? If it is low you can get your GI to give you B-12 shots and you will gain tons of energy.

The down side is, you can sure tell when it's time for a shot. You are just drained. I used to get B-12 shots about every 8-10 weeks. Now I just take 1,000mcl per day to ensure I get enough B-12.
 
marmite?

I can relate. Even if I am not having Crohns symptoms I sometimes feel exhausted like you described.
 
lol. their slogan is "love it or hate it" that can't be good!

So it is like vegemite just the northern hemispheres version?
 
Yup. It's like vegemite, which I have had and am trying to remember... Think marmite is a wee bit stronger taste and more salty.
 
Moving this thread on a bit.... I think part of my trouble is being scared about what might happen if I dont win this Crohns battle. I believe my mother might have had Crohns/IBD for years before she ended up in hospital and some form of ostomy. My sister has some form of stomach/bowel problem too.

As well as other stresses in my life, I'm think I'm struggling to accept, to cope, with the simple fact/concept/whatever of having a chronic condition that isn't going to go away with a few pills, or an operation. I know it's only been what 7 months I've been dealing with this. It feels like more. I'm just utterly fed up of it. If I knew at the beginning what it was going to be like, I'd have been on azathioprine/pred/whatever straight away. Except the doc's did a great job of frightening me utterly silly with talk of the side effects that I delayed seeing my gastro-chappy for a follow up appointment for a couple of months for fear of him putting me on them.

How do you cope with dealing with this for years without going loopy?
 
Good question Beth! I'm not sure how we cope. (I say "we" - really, I haven't been diagnosed for all that long either.... probably about 3 1/2 years, with the past year and a half causing me the most bother.)

I guess the coping is as individual as the disease is to everybody.

I found last year that I had a lot of fatigue. Unfortunately it IS a major thing with Crohn's. I always wondered if it was the B12 thing, but several blood tests showed my B12 levels were fine.
I was astounded how the fatigue disappeared after I recovered from my resection operation. (The crohn's bit that bothered me was a stricture made from scar tissue, so no amount of drugs would fix that) I've just been unlucky and had something flare me up again since. So I'm guessing active Crohns really does give a lot of fatigue.

You should try some medication, though. I'm not really an advocate of drugs, not considering that none of them worked for me, but it's best to try it and see if it helps for you.

Oh, and Marmite is great! :D
 
I found that if I keep going and going and going I am not as fatigued but if/when I ever slow down I get soo dang tired and stay that way for a couple of days.
It stinks.

I have eaten Marmite.............not my fav.:confused2: My friend from England brought some over and we ate it on bread. Blah.
 
beth said:
How do you cope with dealing with this for years without going loopy?
Click to expand...

There are two things that I can say helped me...one, a therapist. Two, time. As I have gotten older it has become easier to accept my crohn's & all the things that come along with it.
 
I do have a call in, as you would say, with a therapist but he's notorious bad about returning calls. He's also very specific about what he'll try to treat. Dunno if he'll take me on this time. All the other therapists/counsellor types I've ever met have been charlatans.

My only other 'release' is walking. But I've felt so completely wacked I've not even gone walking over the Fens. This morning I did walk part of the way into town with hubby... and then slept for a while this afternoon! Better than nothing I suppose.

Oh, and marmite is best spread very thin on toast.
 
I know exactly how you feel Beth.

I am currently going through an extreme exhaustedness phase. I do get extremely tired when I am coming up to the end of the 8 weeks between my Infliximab doses, but this time (get my next dose on Tuesday) it is particularly bad.

It is so hard to try and be upbeat when you are so tired. I have been diagnosed for nearly 4 years and I really don't think I have accepted it. In the beginning I had a real 'so what-poop happens' and I told myself it was all fine when in reality I really wasn't coping very well and I still don't feel I have totally accepted having Crohn's yet.

I suppose you really do have to take each day as it comes, and once you start some treatment I am sure you will begin to feel a bit better.
 
Thanks jetstreem. I try to be upbeat, but whilst I can do it for a couple of days say I quickly run out of physical and 'mental' energy - if that makes any sense. I find it hard to concentrate for any length of time, to even read a book.

I am on treatment kind of - diet, but start azathioprine soon. I'm pinning my hopes that it'll do some good. Whilst hoping like hell that I'm not one of the 20% it takes a dislike to.

Sigh.
Anyway hope you manage to get out of your spell of exhaustion.
 
beth said:
I think part of my trouble is being scared about what might happen if I dont win this Crohns battle.
Click to expand...

i think you have to think about what it means if the crohns "beats you". how would you define the point at which it has won? im pretty sure you dont mean it literally, as very very few people pass away as a result of crohns.
so what does it mean to lose the crohns battle?
coping is a matterof perspective in some cases i believe.
so once you figure out excatly what about the crohns you are afraid of, then you can work on adjusting you life so that you are still happy even if the worst should occur
 
I'm not sure I've actually thought about what loosing entails Kello! I suppose it means becoming symptomatic again, diarrhoea, having to have abdominal surgery of any sort. But of course that's not really an end anyway as you point out; people dont die of Crohn's!

Hmmm. More thought needed there.
 
Hi Beth,

Everything you've said rings true for me. I recently have felt utterly exhausted all the time but blood tests have come back all normal. It's like there's no explanation for it other than 'it's just the crohn's'.

I don't have any answers other than just take one day at a time rather than looking at the big picture. I recently tried to come off Flagyl and had a massive flare. I was thinking to myself is this the way I have to live my life forever now? It can be so difficult at times. As hard as it might be I find that giving my body some rest time when it needs it works best rather than trying to push through it. Eventually I do start feeling better.

Good luck with it all.

Amanda
 
Hi Beth!
Your feelings are completely natural, especially having only recently been diagnosed. It's hard to accept at first that you can't just take a pill or something to make CD go away. But - use the diagnosis as a means to improve your lifestyle - what you eat, how you exercise, etc will help you live more healthy. Try to focus on making positive changes!

As far as fatigue - we all have it. I'm dragging ass big time today and have been for last week. Hard to get motivated and I feel like I just want to go to bed and sleep for two days straight. Other than giving in and napping, I don't have a solution there.
 
Thanks Amanda and Fenway. Seems I'm far from the only one!

The silly thing is I had far more energy when I had diarrhoea. Which doesn't seem to make sense. Surely as I'm absorbing water better, and hence nutrients I should be bouncing with energy :(

Had a doze this afternoon, and still feel shattered.
 
That is odd that you feel more energized when you're flaring. I'm usually the opposite. What meds are you on? Maybe they're the culprit? Have you tried a 3 wolf moon shirt?
 
No meds yet, just diet. Starting Azathioprine next week.

I do have a wolf tee-shirt somewhere!
 
Beth .. it looks like we'll be trying the same medication at around the same time. :) We'll have to keep in talks with each other to see how it helps us and our progress and such. :) I'm going to my GI on Wed to get the prescription and talk about the colonoscopy results.

Fenway meant the three wolf moon shirt (previous thread).... not just any wolf shirt will do!! hahaha
 
I did see that thread!

As for the Aza... yeah, we'll be on it just in time for Swine Flu to peak!
 
I'm not personally concerned with Swine Flu. Like it has been said before, it's not worse then the regular flu. My doc told me I have to get flu shots and pnumonia shots and such from now on. Did your doc tell you that too?
 
Nope. I get flu jabs anyway because of my asthma. Only old people round here get the pnumonia jabs.
NACC dont seem to be too bothered about it so I'm not going to be too worried. But last time I had flu (99/2000) it wiped the floor with me for two weeks, and probably took another 3 months before I was fully back to normal.
 
My GI did a bunch of bloodwork including innoculations. And told me to get re-vaccinated for a couple things. And get the flu, pnuemonia, and something else every year now. <shrug> sure Doc. I haven't jumped on any of it yet. hehe ;)
 
Hi Beth,

Never even think about losing to Crohn's...........think of it as just taking part (or in my case parts !!)
I don't get on here too often but have actually just read all the comments above.

To be really honest with you each day can seem harder and harder. As each one passes, another tougher one rolls in right behind it. There isn't a magic wand for this but just keep the chin up and take it, and smile and laugh whenever you get a chance......You will remember these happy moments when you are down, and this will help you balance (somewhat) the positives and negatives.

I wish you health and happiness.

Oh and if you get any e-mails telling you that you can get swine flu from reading it....just delete it........ot's just SPAM !!

Everyone is allowed a bad joke occasionally aren't they..

Good luck
 
I'm not sure I've actually thought about what loosing entails Kello!

I think this is significant: I hadn't thought about loosing consciously. But the way my mind works is a lot of sh*t gets processed sub-consciously and it really has a great deal of capacity to hurt me....

Right back at the beginning the gastroenterologist scared us witless with the side effects of the drugs used to treat Crohn's. Including azathioprine. And I mean we were scared witless. Maybe it was so I kept with the Elemental long enough for it to do me good. I dont know.

Roll forward a few months and I've made brilliant progress. The GE says so. But it aint enough and he's recommending Aza. However, I dont want to. And only agree to it after the results of the colonoscopy confirm I still have patches of (IIRC) active inflammation. So whilst my conscious side says 'okay we knew this might be needed' I think my subconscious has declared we've lost and is beating me up about it. Yeah I know we haven't... but nevertheless, that how my head works.

Anyway. Rhetorical reasoning. Nothing to see here. Move along the bus.
 
So it's probably time for an update to this thread...

I spent a long time with my GP this morning - just hope the people waiting after me were understanding! We talked about the stress, achy joints including my jaw that cracks and that horrible 'electrical' pain, tiredness, headache, blood test results. Pretty much the lot.

Conclusion is to give me some mega- iron supplements to bump that up and see if it helps with my tiredness - I can take up to 600mg - RDA is 14mg of iron! Headache is likely to be originating from the achy neck/jaw, and along with the other joints too we're doing a full rheumatology screen as well as bone somethingorothers at my next scheduled blood test. Review in a months time to see if the Azathioprine is helping with the joints - since rheumatologist is likely to want to do that anyway, and consider the test results. He's also going to see if the psychologist chappy I'm trying to see is about via his contacts at the hospital, as he agrees I need to see someone - his comment was their (GP) practice is an interesting one for stress and the like: many of the patients are above average intelligence and they/we don't seem to cope with illness as well as other people.

So umm, there we go.
 
The electrical pain is when my jaw 'cracks'. It's like someone put electrodes in my right ear and connected them up to a car ignition coil.... starts under the ear and runs around my head for a few seconds. Ouch.
 
No, and having looked it up I dont think it is that. It hit's as the jaw locks and then frees up whilst, say, yawning. Dont think it's triggered by anything else.
But thanks for the thought.
 
Hey beth, I get that weird electrical zap thing just under my jaw too! how strange, I've never thought about it as it only happens very occasionally - no idea what causes it but it makes me jump as it's so severe. I've just gone back to Aza 2 weeks ago, having taken it very successfully in the past. It did good things for me 3.5 years ago, so I hope it's as good this time, and that you get decent results from it. It is an awful lot to get your head around though, particularly if you come home from the consultant and start googling...
 
beth said:
I spent a long time with my GP this morning - just hope the people waiting after me were understanding! We talked about the stress, achy joints including my jaw that cracks and that horrible 'electrical' pain, tiredness, headache, blood test results. Pretty much the lot.
Click to expand...


That sounds a lot like how the tiredness / fatigue is with me - apart form the headaches. It was the main thing that I originally went to my GP about. I was always tired and feeling that I need to close my eyes and fall asleep. I can only describe it as painful to stay awake, in that I can stay awake if I fight it but it almost 'hurts' to do so. When it comes on really bad I call them 'sleep attacks' and they usually last for about an hour (which is hell) and usually involve that electrical pain you mentioned (although mine sounds less serve than yours). I also find it interesting that I have had problems with my jaw 'cracking' since developing Crohn's.

After many years and GP/Hospital/clinic visits, I got diagnosed with haemochromatosis (iron overload) AND then Crohn's which is a double whammy as far as tiredness goes. Unfortunately, I haven't found one particular thing to help with the fatigue though. Caffeine does nothing for as I am not tired in the sleepy sense of the word. Sleeping when your body wants to, even if it is just for 15 minutes, can be helpful I think (Difficult when you're at work!). Thinking about it, one thing that seems to help is eating smaller, less 'heavy' meals - and not eating too late in the day either!

I have found that recently I am managing the sleep attacks better but I feel so weak. I have no strength and physical activity (house cleaning, gardening, even making the bed) leaves my limbs aching within about five or ten minutes. I don't get out of breath, it just hurts to move my arms -or legs if I am walking. The pain isn't THAT bad and doesn't get any worse once it has kicked in, but it does make chores even more loathsome! :)

One positive thing about having the haemochromatosis is that I get my blood removed (about 1 pint) and analysed once every 3 months. They check my B12, haemoglobin, liver function, iron (ferritin), etc. so I am well monitored for that sort of thing.
 
Hello Wizbit. Isn't Crohn's and excess iron unusual? Seems most Crohnies struggle to absorb iron. But at least it's not too hard to drain some blood!

I drove hubby up to Ely this morning for a wander around town and a bit of shopping... and had a 2 hour doze when we got back. :(

It also turns out, my GP phoned later, that I have excess potassium in my blood. We don't know why but for now I'm to cut down on soya, potatoes, broccoli, and cocoa which are either high, or good sources, or potassium until we at least we figure out what it going on. Since my diet is pretty limited anyway, this development isn't exactly welcome. And certainly isn't if it is an indicator of my kidneys going wrong.
 
Hi Beth.

Excess potassium doesn't sound good. As I understand it, potassium is very important to cells as the salts are used in nerve control. I wonder if that is why you are getting such shocking and sharp in your jaw?

It also seems that a lot of high-potassium foods are also high in fibre, which can be a Crohn's sufferer's friend or foe, depending on how the condition is with you...
 
I suspect my jaw when it 'clicks' presses or somehow triggers my trigeminal nerve and hence the electrical pain.

High potassium can apparently damage the heart! So I'd rather not add that to my woe's! Avoiding it does mean not being able to eat some of my favourite food tho.
 
Another blood test today. Will be interesting how the potassium level comes out. I have two theories based on the result:
1) If it has dropped back to normal - it was the large amount of bacon we had the night before the test - some bacon is cured with potassium nitrate and since it was a butchers own it may well be.
2) if it's still high - it's the azathioprine.

[ranty swearing warning...sorry]
In other news, the therapist I've been trying to contact has finally popped his head above the parapit only to say he can't take me on due to his own medical problems. p1ss, fsck sh*t and b*gg*r. I really really dont want to start with someone new. I'd have a lot of history to go over and it'll hurt like hell. I got on really well with this chap, which was a first for a $shrink, and I could tell him of the really bad sh*t that happened pretty easily and without him doing that pathetic counselor sort of 'oh that must have been really terrible for you...' kind of crap that so many seem to think necessary. I just want fixing the bl**dy problem not a pat on the f*cking head. Dammit.

I dont know what to do about it now. He's given me a name. but...
 

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