chronic fatigue...just another one of my problems

[mharvey90]

For the past couple of months now I've been noticing that I've been very tired all the time lately. Now this isn't something that's completely uncommon for me, or for many of you for that matter, cause I had my terminal ileum removed 7 years ago, and I know that can really mess with vitamin b-12 absorption.

However, for the past few weeks this fatigue has becoming very excessive to the point where I honestly would rather sleep in my bed while all my friends and roommates are in the living room or out having a good time. (I'm a college sophomore.) I feel like this is another huge disadvantage to me, along with my crohn's symptoms in general, and that it's really gonna hold me back in school this semester. I'm a biomedical sciences major, and I hold about a 3.6 gpa, and I take my classes very seriously. I've always been a little bit of a procrastinator, just like most of the human race, but these past couple weeks, I go to sleep early (10-11pm) and I wake up for classes, and as soon as I'm done with classes, I come back and take a nap. I wake up a couple hours later, get done what absolutely NEEDS to get done for the next day, eat dinner, and go to sleep pretty early. Normally, I'd go to the library and get work done or study, but I can't seem to get myself to do anything other than just sleep.

I started taking 1000mcg/day of vitamin b-12 about a month ago, hoping that would help to get things on track again. However, I have noticed no improvement, I've actually gotten worse since then.

I need some advice from you guys, if anyone else experiences chronic fatigue, and what you do to help it. I'm currently on a low residue diet for the past 2 weeks, have been having mostly constipation instead of diarrhea for about 6 months, taking humira 1x week, along with a multivitamin, align probiotic, and azathioprine 150mg/day. I'm sure my eating habits with my low-resi diet is not affecting this, cause the fatigue began before it, and I make sure I get protein from fish and chicken, etc. Please help! This is really interfering with my life!

[Peaches]

Hi there - sorry you are struggling!

The first thing I would do if you haven't already is done it, is ask for a B12 blood level check. If it is way off - start taking the shots instead.

The second thing that comes to mind is the Aza. How long have you been on that dose? It could be just me- but they ended up having to take me off Imuran (similar to Aza) because of the fatigue thing. I could have slept 24 hours practically and still been exhausted. I have no idea if this is even plausible in your situation - but maybe they could back your dose down a bit to see if this helps? Again - no idea if that is a bad thing for you to do or not. Is your disease pretty quiet at the moment? Which leads to the next thing....

I get fatigued when I have disease activity or inflammation going on.

That's it for me....I hope you can get it figured out. You are in such a much more important phase of your life than me right now - you need all that energy to get you through!! Good luck!

[katiesue1506]

Other than the bio med science major (im a law major) you just wrote my story. I'm not so tired anymore but I used to do what you did. I take the exact same amounts and meds you take. The only difference is I took an iron supplement with vitamin c to help absorb. It only works after doing it for about a month, but I finally got my hemoglobin numbers up to 12 and was able to come off the supplements. Are you anemic? If so you should consider a gentle iron suppl (like SlowFE) and vitamin c. It really helped me.

I also always get in bed by 10-11 pm and make sure I keep a routine schedule. I wake up between 5:30 (if I work at 6;30 on Fridays, and the other days I'm up by 7:30) Weekends I sleep in till 9:15-9:30.

[Jettalady]

I see you are taking 1000mcg a day, maybe it is not being absorbed, with the Ileum being the most part that absorbs nutrients, you may have to have a b12 shot. I do, once a month. Sometimes the meds do it too, and you are under stress for College. Your Seritonin levels could be low.
http://en.wikipedia.org/wiki/Serotonin

Could be Crohns related too, alot of Crohnies have fatigue one time or another. Another thing is to exercise, brisk walk, something to bring back energy, you are eating well, so maybe check the Serotonin website. Sorry not much help.

Keep us updated. Feel better soon.

[mharvey90]

my last blood work showed that my b-12 was on the low side, but nothing that would really cause any worry to my doc. he told me to just start taking b-12 supplements, 1000mcg/day, and i did. I was severely anemic as a kid, but it got under control. last blood work also showed low iron level, and my doc told me to eat more red meat (which i think would probably kill me, haha) and take an iron supplement. however, the last time i took iron, it severely constipated me, and i have constipation problems as it is...so its like a lose-lose situation.

I've been on aza for 6 months now, started on 100mg, and then a couple months ago went to 150mg. i will be calling my doc tomorrow about this fatigue thing, i guess i'll see what he has to say about it, but i am also flaring right now, having difficulties other than just this fatigue, so i'm not sure if it would be good to lower the dose of aza.

[katiesue1506]

thats why I would consider a gentle iron, they arent as harsh and are extended release... and maybe talk to your doc about a low daily dose of miralax if youre still constipated (i dunno though, definitely ask first)

[Fog Ducker]

I was gonna say iron too, I dont know what options are out there but there should be something that you could take that wouldnt back you up so bad. Sorry I cant be of more help.

[kittykat92]

i hate feeling tired all the times ESPECIALLY when I have friends round and just want to sleep - I'm about to start university so Im in a similar situation...its so annoying to just lack the energy to do stuff hope you find an answer!

[mharvey90]

thanks guys...hopefully i can talk to my doctor tomorrow and see what he has to say. i appreciate all the replies

[shazamataz]

I have been so tired for so long I can't remember being not tired! It has gotten worse since diagnosis and tapering off pred. I think I need to eat more! I hope you get it sorted as it's no fun at all

[KiwiJo]

Hi there

ive officially been diagnosed with Adrenal Fatigue (since having Crohns). Usually the first stage is that your body when under a lot of stress produces higher than normal levels of cortisol to cope with the stress. Us Crohnies are ina worse situation because our bodies are under stress from the inflamation (the body naturally produces cortisol to help deal with it) then our doctors prescribe us prednisone (synthetic very potent cortisol) to attack the inflamation. after a while the adrenal glands get worn out and start to produce less cortisol on their own. You might notice that tapering off steroids is harder because your adrenal glands cant make their own steroids to support you during the taper.

Cortisol has lots of other uses besides helping with inflamation. It helps regulate your wake/ sleep cycle. Which is why people often find it hard to sleep on prednisone (they feel amped) and hard to stay awake when they are coming off steroids or after times of extreme stress. It helps with allergies and also effects blood sugar regulation. google it, it's quite interesting

Another thing that can happen when your adrenal glands get worn out is that your body will "steal" progesterone and metabolise it into cortisol to make up for the defficiancy. this in turn can make you defficiant in progesterone. Symptoms of progesterone defficiancy are: PMS, restless legs and for me worse Crohn's at the end of my cycle. THEN! When you have low progesterone your estrogen is unopposed and you have an imbalance that is doubly bad for crohn's because estrogen is so hard on the gut.

You can get your cortisol tested (24 hour urine test and an AM blood test). if this doesnt show up any deficiancy, dont panic. Doctors only seem to react when cortisol is low enough to induce death/ addisons. My doctor picked up that my cortisol was on the low end, plus with my symptoms and other hormone tests, and was able to finally diagnose and treat me!

well, that is awfully complicated, but if you google it you can find more info that probably explains it better

[razz]

Get your B12 checked again. There are two parts to it, one is I guessed whats stored and one is active. My storage just looked low but my active was CRAZY low.
I always thought once you illeum was gone you couldn't absorb B12 because that was the part that absorbed it? That why the shots are so much more effective. I figured my b12 was so low because mine is scarred.

[mharvey90]

Kiwi, thanks for that, that's pretty useful information! I appreciate it. And Razz, there's a section of a couple of feet that absorb b-12 i believe, and i only had 6 inches removed so i think that i would still be absorbing it, but i'm not sure!

[imisspopcorn]

Good Luck 'M'....fatigue is awful. I hope you feel better soon.

[razz]

Originally Posted by mharvey90

Kiwi, thanks for that, that's pretty useful information! I appreciate it. And Razz, there's a section of a couple of feet that absorb b-12 i believe, and i only had 6 inches removed so i think that i would still be absorbing it, but i'm not sure!

Oh wow I did not know that!! xx

[uab grad student]

I also have a lot of fatigue and one thing my doc told me is to take 2500 mcg of B-12 sublingual every day. If it doesn't help he is going to get me set up to have the B-12 injections. From what I understand, you can't OD on Vitamin B-12 (just excrete it through the urine) so I would increase your dosage and try the sublingual tabs to see if that might help. The sublingual pills are supposed to absorb a bit better.

Good luck! I know the fatigue is very annoying, especially since you are in college and everyone else is having fun.

[Jettalady]

You are right about the sublingules but having said that the B12 shot goes through the blood and system, and absorbs higher and faster. I go once a month 1000mcg. Sometimes it is just the disease itself along with taking meds.

[mharvey90]

I talked to my doctor's secretary today, and I am going on Friday for my first b-12 shot. I guess I will be getting once a week, for a month, and see how that goes, and hopefully i'll feel a little bit better to stick with just the tablets. thanks again guys

[Nic]

I just went to my doc last friday to talk to him about having my vitamin levels checked. I was going to start taking the Slow Fe Iron tablets, but he gave me a prescription for an Iron supplement that has something in it to make sure you don't get constipated. Unfortunately I haven't picked it up yet (I've been having normal BM's and I don't want to go back to D by taking it!!), but when I get it I will post the name of it for you. Maybe your doc could look into that for you so that you won't be constipated while taking the Iron.

[Sue-2009]

I took suffer from fatigue. Being a working mom with two active kids, it is tough I called my general dr today, and asked them to run some tests--my leg muscles also ache-like I've been excersising. So, we'll see. I felt better on prednisone. Now just pentassa and rowasa enemas. (I get B12 shots monthly) Sorry to whine! Sue

[Mountaingem]

Originally Posted by Sue-2009

I took suffer from fatigue. Being a working mom with two active kids, it is tough I called my general dr today, and asked them to run some tests--my leg muscles also ache-like I've been excersising. So, we'll see. I felt better on prednisone. Now just pentassa and rowasa enemas. (I get B12 shots monthly) Sorry to whine! Sue

Sue, could you please share your experience with Rowasa enemas? I've been using them for about two weeks and thoug diarrhea stopped, I'm still having symptoms. Does it take long to reach full effectiveness? Thanks!

Sorry don't mean to hijack the thread, I just noticed your meds and I'm desperate for advice!

[Misty-Eyed]

Be careful if you are anaemic and not taking any iron supplements. I didn't take any as they upset my stomach a lot and ended up really anaemic due to the continual drop of iron stores. Now I go to see a haematologist every 6 months and have an iron infusion to top me up every so often. I'm no longer as pale, cold and tired as I was!

[Sue-2009]

Two weeks isn't that long. I really can't comment about the diarhea because I have a j pouch. I had my colon removed. So, pretty much all liquid and sometimes erh ahh umm sorry its like toothpaste. Which is how it should be. But, what I do notice that after I used it for a month, the pain and achey stuff dwindled. I still get it once and a while. But not to often. I get tired alot. I am beginning to think its the darn disease. I know what you mean about desperate...I hear you! Good luck....Maybe someone with a colon can answer....??? I hope you feel better!!! Sue

[BWS1982]

Vitamin D deficiency can also contribute to fatigue, especially in the northern hemisphere nowadays. Us up at this latitude (you're in Buffalo) are susceptible to this at this time of year, depending on how much exposure you get. Either way, I have had fatigue even in the summer, and it only got worse during the winters, and it is horrendous these days.

I've been doing Vitamin D supplementation for 3 weeks now, hoping to see a difference. I can't say yet though, if there is one, because I've had so much tinkering of meds lately it's hard to tell (I'm perhaps a little more awake during the days, but not markedly).

[mharvey90]

thanks for the info
i don't know if vitamin D deficiency is in any way genetic, but I know both my mom and dad have major D deficiencies and have to take megadoses of it