Fatigue

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AnimalLover

AnimalLover

Joined
Nov 15, 2014
Messages
16
Hi! First time here.
Decided I would talk to people who are in the same boat instead of those who don't understand because they don't have Crohn's.
Was diagnosed in 1997 and have only had 1 major flare up about 7 years ago. Disease is pretty well managed with Asacol. I still have pain and diarrhea at times when I eat something but overall my situation has been pretty mild. Have recently developed acid reflux and have had a couple bouts with kidney stones as well.
My biggest issue is the fatigue!!! I get so frustrated and depressed because I am so incredibly tired all of the time. I used to have fun be involved in family and friends. Now I have no desire to go out and do anything because my energy level is nil. All I want to do is sleep. There are days when it is all I can do to stay awake at work as well as driving to and from. Caffeine doesn't work, B12 doesn't work, energy bars don't work, energy drinks just make me jittery. I try different exercise options but after 2-3 weeks I don't feel any better and by then I am bored with the routine so I stop.
I am so tired of feeling this way. I want to go out and have fun and enjoy life again! Anybody have advice????? Please help.
 
Hi and welcome.

Fatigue it a tough one. I think its important to get it looked at. Full blood work is a good place to start. Iron, B12, inflammation markers etc.

Sending you my support.
 
If the physiological reasons for fatigue have been ruled out then I'd suggest talking to the doctor about the possible psychological causes of fatigue.

I recently asked my GI specialist for a referral to the psychiatrist that works at the clinic.
 
Maybe a side effect from your medication? Pills help one thing but normally cause a lot of other problems. I also get very tired, about halfway through the day I need to rest or take a quick power nap. I have extremely low iron levels and b12, also my meds. I also strongly believe stress plays a huge roll in how we feel. Hope you get a little burst of energy :)
 
I've had pretty nasty fatigue as well, but my iron levels have been shaky at best due to a continuous flare since June. I am on Asacol HD as well and I do think that might be a factor as well
 
Not sure how it works for you, but even if my iron levels etc. are normal, I am sometimes fatigued as well. However, this pretty much is only limited to weekends, while during the week, I have no problem getting up at 6:30am and working throughout the day, sometimes past midnight.

When are you fatigued? Generally, even at work, or only if you do not have a regular schedule for a day?
 
I guess I haven't really paid much attention to when I am not feeling this way because it is so few and far between. I sleep well at night, my diet could be better which is why I do a multivitamin. I have noticed something kind of weird though. I gets worse when the seasons change from summer to fall. I have no problem falling asleep in the chair for 2 hours and then getting up and going to bed and sleeping a full night.
 
Maybe Vitamin D??? Someone told me drink more water. I do have a very hard time drinking fluids. I just don't think about it during the day, then when I do drink I feel extremely bloated.
 
AnimalLover said:
I guess I haven't really paid much attention to when I am not feeling this way because it is so few and far between. I sleep well at night, my diet could be better which is why I do a multivitamin. I have noticed something kind of weird though. I gets worse when the seasons change from summer to fall. I have no problem falling asleep in the chair for 2 hours and then getting up and going to bed and sleeping a full night.
Click to expand...

If you get more tired when the seasons change, could it be related to Seasonal Affective Disorder?

Also I find I get more exhausted when I'm cold; it seems like when my body has to use more energy to keep warm, it diverts energy that would otherwise be being used to keep me awake! If I'm tired and cold, I can sometimes manage to wake myself up a bit by getting a hot water bottle.

I know these suggestions are kind of long shots, but it seems like you've already ruled out the more obvious possibilities.
 
Hi AnimalLover,

Well -- If you have a suspect diet, a Multivitamin will not help. We need to drink half our weight in water, not fluids, but water per day. (Lizzie drinks, energy drinks and coffee, do not count as fluids.) And our Vit D3 levels need to be over 40, 60 is best.

If you drink your water throughout the day, you won't feel bloated. (its pretty amazing, the energy you get from drinking the correct amount of water every day!) If you make small changes in your diet, say one change a week, it won't be noticed, and if you take a 30 min walk three times a week, it should help with the sun and exercise.

And SAD can be aggravating all of this. What do you think?
 
I guess I have never heard of SAD. I'll have to do some research on that. I am always cold! Perfect weather for me is 90°. I can be sitting at home under a blanket in the middle of summer, cold in a hot shower and I have to wear a coat into stores and resturants because I just shake in their air conditioning. Winter is painful for me because I am never at a comfortable temp. My husband can't wait until I start having hot flashes :) I have had night sweats since being diagnosed 17 years ago, so in a way I am already having hot flashes.
 
I started Night Sweats at 35, while I was still nursing my last child. HA! AnimalLover, it sounds like maybe, you need about 20 minutes of sun a day, and a full blood workup. Do you do that?
 
Fatigue is a bummer. I have it too.

I have Crohn's and my mother has Multiple Sclerosis. Both of us have issues when the seasons change. We don't have SAD either.

My Crohn's is systemic and comes with an extra-intestinal manifestation of RA like arthritis that is very sensitive to temperature changes - particularly cold.

Immune disorders can cause heat sensitivity and the like as well. I would seek a medical explanation for the fatigue while sharing with a trusted support network like you're doing here ( or with a person nearby you trust ).

All of my tests come back normal but I still feel dog tired sometimes. If I think about it for a while, it does make sense. Our bodies are active and sometimes perhaps too active for the medicine we take to keep up. This is why it is important to get a doctor who will listen to you about this and not say you're fine and have to deal with it. I had a doctor like that... my new doctor is better ;)

Ask yourself these questions and post back if you want:
  • Do you feel more fatigued after eating certain foods?
  • Do you feel more fatigued after a certain quantity of food?
  • Is there a temperature range that you feel ok in?
  • When you are cold do your extremities go numb or tingle?
  • When you are hot, are you flushed and actually feel hot? Or does a person touch you and think you're fine?
  • Does your blood pressure spike during any of this?
  • Are you ever short of breath?
  • Do you ever get dizzy when fatigued and attempting to move?

Also check out some reading on season changes:
http://www.autoimmunemom.com/environment/cold-weather-impact-autoimmune-disease-flares.html

http://specialtyclinics.med.sc.edu/joint_pain.asp

http://en.wikipedia.org/wiki/Rheumatism
 
Hey Animal Lover

A couple of things you might want to research - I have had experience with 'SAD' and fatigue - these have helped me a bit.

Blue light therapy - you can get a blue light box with LED's - use for 15-30 min each morning. - There is a lot of research behind it and I find it helps - but se if you can borrow one to try before you buy.
Melatonin - I only use this when things are really difficult, but it seems to help 'reset' my sleep a bit.

Pilates - helps me relax and also is a bit of exercise.
Exercise - even walking (though I prefer dancing) it is really hard to get started, but after a while (6 + weeks) you miss it if you don't do it. - Do you have a friend you can exercise with and be accountable to?
Magnesium -helps me sleep and gives me energy - not redecorate the entire house style, but can cook dinner before I collapse on the couch


Other things that might be worth a try
- natural cherry juice which I think has melatonin in it?
Camping in a tent in Summer - sounds stupid I know, but there was a really good study on it - aparantly helps reset things.

If you are interested in natural medicine you could try a chiropractor.

Are you getting enough protein?

The other thing is that for me - some days are worse than others - Some days I wake up and the big to do list for the day just won't happen, but other days I can get it all done. It also seems to vary over the day - I try and think - OK, well what can I do right now - even if it is just putting some washing on, then sit down for 5 min and then do another thing - and then trust that it will all happen eventually!

Best of luck - look after yourself:)
 
maggiesfour said:
Hi AnimalLover,

Well -- If you have a suspect diet, a Multivitamin will not help. We need to drink half our weight in water, not fluids, but water per day. (Lizzie drinks, energy drinks and coffee, do not count as fluids.) And our Vit D3 levels need to be over 40, 60 is best.

If you drink your water throughout the day, you won't feel bloated. (its pretty amazing, the energy you get from drinking the correct amount of water every day!)
Click to expand...

Actually, coffee and energy drinks do count as fluids. (I'm not sure what Lizzie drinks are, so I couldn't say whether they count our not!)

Besides guzzling water, milk is a top choice to refuel. Sodas, even diet ones, get a bad rap for lacking nutritional value, but they can still be hydrating. Juices and sports drinks are also hydrating -- you can lower the sugar content by diluting them with water.

Coffee and tea also count in your tally. Many used to believe that they were dehydrating, but that myth has been debunked. The diuretic effect does not offset hydration.
Click to expand...

http://www.webmd.com/parenting/features/healthy-beverages

(That's the link to the first page that came up when I googled it, but there are many others.)
 
AnimalLover said:
I guess I have never heard of SAD. I'll have to do some research on that. I am always cold! Perfect weather for me is 90°. I can be sitting at home under a blanket in the middle of summer, cold in a hot shower and I have to wear a coat into stores and resturants because I just shake in their air conditioning. Winter is painful for me because I am never at a comfortable temp. My husband can't wait until I start having hot flashes :) I have had night sweats since being diagnosed 17 years ago, so in a way I am already having hot flashes.
Click to expand...

Are you underweight? (Sorry for the personal question! Feel free not to answer if you'd rather not.) Being underweight can make you both tired and cold.
 
As a side note, a friend who has lupus told me that her fatigue and insomnia (real pain to have both i know) both seemed to settle some when she got her vitamin D up... My doc thinks low vitamin D (we just learned mine is very very low) might be a cause of some of my issues with various things as well..
 
UnXmas said:
Actually, coffee and energy drinks do count as fluids. (I'm not sure what Lizzie drinks are, so I couldn't say whether they count our not!)



http://www.webmd.com/parenting/features/healthy-beverages

(That's the link to the first page that came up when I googled it, but there are many others.)
Click to expand...

I just don't think about drinking during the day. I am lucky if I get 16oz of fluids a day. Can't do reg milk, lactose intolerant, not a tea drinker, the carbonation in sodas bloat me up, coffee is ok once in awhile. I just need to push myself to do it and see if it helps.
 
aideen33 said:
As a side note, a friend who has lupus told me that her fatigue and insomnia (real pain to have both i know) both seemed to settle some when she got her vitamin D up... My doc thinks low vitamin D (we just learned mine is very very low) might be a cause of some of my issues with various things as well..
Click to expand...

What is a good amount to take? I was taking Calcium with Vitamin D pills for awhile because the steroids over the years has caused pre osteoporosis. I can't even remember why I stopped taking it. Maybe I should start up again.
 
I know there are recommendations around for a general dosage, but I cant think of it offhand... I know my doc is starting initially on a 50,000 once a week dose but thats cause shes freaking out that my level was 11 rather than the 30-100 it should be
 
Hi there, if you are still on steroids they can cause poor sleep at night and tiredness. A factor of Crohns is fatigue too. I go and have a rest during the day, that's o.k You need too. Try new interests, that will give you a boost, a goal to work for. I have gone back to Swimming and just love the mobility I have in water, and making new friends. Yes, I rest later in the evening but it breaks the routine. That helps offset the fatigue. Best wishes.
 
AnimalLover said:
I just don't think about drinking during the day. I am lucky if I get 16oz of fluids a day. Can't do reg milk, lactose intolerant, not a tea drinker, the carbonation in sodas bloat me up, coffee is ok once in awhile. I just need to push myself to do it and see if it helps.
Click to expand...

Do you like juice or squash? Hot chocolate? The only drink that dehydrates you is alcohol. Even foods with a high fluid content help to hydrate you: soup, fruits, yoghurt.

That said, unless you're chronically very dehydrated, getting a bit more liquid in you is probably only going to make a small difference to extreme fatigue at best. I know what extreme fatigue feels like, and if it were that simple to treat, I'm pretty sure I would have discovered that by now! But finding lots of little things can help.

The little things that I've found can give me a bit of energy: making sure I'm not too cold, like I mentioned above; getting lots of sleep at night and a short nap during the day (but not in the evening); getting up early in the morning (it works for me!); exercise (which at the moment for me means just walking), and taking codeine (prednisone also gave me an insane amount of energy, and prednisolone gave me quite a bit too, but I can't take them just for that!). These things only help in the short-term, giving me immediate boosts, they don't do anything that lasts. But maybe if you find enough things that help you it could make things a bit better.
 

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