How do you cope with the fatigue?

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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/25/2009 3:07 PM (GMT -6)   
Although I am heading towards remission, and my BM's are relatively back to normal, I am really struggling with fatigue. All I want to do is eat (stupid Pred!), and sit down lol. I struggled through full days at work most of the last year, just having to ignore how tired I felt and get on with it. But since my flare up got worse a few months ago I have realised I need to be sensible. I went back to work today after nearly 2 months off sick and after an hour on my feet I felt lightheaded and headachey (something I have been struggling with anyway - poss made worse by the Pred) and so tired! I only worked 2 hours and am still tired now 6 hours after being home! I'm worried how long it'll take me to get used to doing full days at work.
 
Why do we get so tired?! Especially now I am very much on the way to remission. Its depressing because I don't feel like doing anything at all. I hope it gets better as I get into remission, but it seems like alot of you on here suffer with fatigue whether in a flare up or not.  
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/25/2009 3:36 PM (GMT -6)   
I rest a lot. And I try not to add extra things on. It sounds like your not adding extra things on either. Sitting down and closing my eyes and just resting for 10m before I'm on my feet for a while, can help me a lot. And then I rest afterwards. It may not be reasonable for you to work full time all the time. Your young enough that you should consider UC in what career you take. I have been doing much better physically, but I still don't feel strong or healthy. I can do pretty much anything now as long as its not physical and I don't do it for very long.
I hope you feel better soon.
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/25/2009 4:05 PM (GMT -6)   
nucid said...
Your young enough that you should consider UC in what career you take.
   This is what is bugging me...I was coming to the end of a management training course until my flare up got really bad at the end of last year and I had have a break from it for a while. I am expected to go back on it once I'm feeling better again but I'm not sure if I'll ever feel 100%, I have not been in proper remission for 18months, so I don't know how my body will act and how well I'll actually feel. And of course there is always the unknown as to when a flare up will happen again. I don't want this to rule my life and end up not doing this management course, but at the same time I don't want to overwork myself. It's hard isn't it, cos its all so unknown!!
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 3/25/2009 4:36 PM (GMT -6)   
Have you had your iron checked? I find that after a severe flare my iron is low and I'm dragging so bad. You may need to take a muti-vitamin or some extra iron. I know the Pred increases your hunger, but are you eating too much sugar or fatty foods? That could cause you to feel tired too. I hope you feel better soon. Be sure to give your body the rest it needs.
 
Is this management course for work and will it add stress to your life? Stress plays a role in our condition.
 
Hang in there!!
Dee-39yrs old wife and mom of 3 boys
UC/PTSD/Panic Disorder/Depression/myofacial pain syndrome 2009-750mg colozal/.750mg clonazepam, 5mg Lexapro-1,000mg canasa/Fioricet/Prilosec OTC-2x daily, Triple Strength Fish Oils/Colonoscopies-4
 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/25/2009 5:38 PM (GMT -6)   
P-Fit said...
Have you had your iron checked? I find that after a severe flare my iron is low and I'm dragging so bad. You may need to take a muti-vitamin or some extra iron. I know the Pred increases your hunger, but are you eating too much sugar or fatty foods? That could cause you to feel tired too. I hope you feel better soon. Be sure to give your body the rest it needs.
 
Is this management course for work and will it add stress to your life? Stress plays a role in our condition.
 
Hang in there!!


Yep I've had blood tests etc done, my iron isn't considerably low, although my GP did say maybe it might be worth getting me on some prescription iron tablets when I go back to see her.

The management course has the potential to be stressful yer, its for a position in a department store. It involves a lot of extra responsibility and can be quite demanding, although they do let you learn at your own pace, and its pretty much learning on the job. I do have ALOT of extra stress with personal issues outside of work and they already interfere with my job by making me anxious and already stressed out before I've even got there sometimes!

Its just annoying because I was nearing the end of the course, having been on it about 9 months and gone through 2 assesments. Like I said, I have the opportunity to go back on it but just not sure if its a good idea, especially this year anyway. Hmm!

Thankyou for your replies :)


22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/25/2009 7:07 PM (GMT -6)   
I eat Cheerios for breakfast. They are high in iron. I also sleep a lot to let my body heal.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/25/2009 7:46 PM (GMT -6)   
Believe it or not, for me I find excercising regularly to help tons with fatigue and my IBD and overall health.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 3/25/2009 9:51 PM (GMT -6)   
I used to have horrible fatigue and attributed it to having this DD. I couldn't get up in the morning, was very tired with low/no energy all day long. I ended up in the hospital this year for severe anemia with 25% of the blood in my body that I'm supposed to have. After being released we discovered that I wasn't making blood as fast as I was losing it and I ended up back in the hospital for more blood a week after getting out. I had a total of 6 units of blood and 1 bag of iron during my 2 hospital visits. I went back to work after 6 weeks off and while I am still building up my muscle strength to what it was before I went into the hospital, my fatigue with no explanation is pretty much gone.

I am now taking an iron supplement (SlowFE) twice a day and am still getting cbc tests done so that the doctor can keep an eye on my hemoglobin number but so far I'm still in the not great but still acceptable range even though I'm flaring and I had my period (first time w/o birth control in years - WOW! I forgot what that could be like!!). I still have plenty of energy. I still can't stay up too late unless if I get to sleep in the next day (exhaustion is one of my triggers) but getting up in the morning is no longer a horrible struggle and that's saying a lot for someone who has never been a morning person. I was dx'd in Nov 2007 and I told my DH last week - I feel better now than I have since before I got dx'd. My doc says that I was slowly but surely losing blood and my body was compensating which allowed me to continue my life - working full time, etc, and get severely anemic. Now that I know what to watch out for I hope to never end up in that state again and I also know that the fatigue that I felt doesn't have to be "normal" just because I have this DD.

I realize that we all have different reactions, difficulties, and responses to UC but it seems like maybe we are accepting the fatigue aspect of the disease without looking further into the cause as it may be curable or at a minimum we might be able to reduce it so that we can have a better quality of life. It makes sense that we are losing blood until our colons are healed/the ulcers are no longer bleeding and we also are not absorbing all the nutrients that we need so by adding the missing items to our bodies we can improve the state of our bodies.

I would recommend that you call and talk to your doctor about getting new blood tests done, and about adding an iron supplement and possibly B12 and/or a good multivitamin to your daily regimen to see if it helps with your fatigue. I wish you luck in finding a solution to your fatigue and to getting healthy. I have to admit that while I'm not back to the energy levels that I had before I got sick, I love having this much energy and being able to do things with my friends and family again without wanting to go to sleep at 8PM.
Ducridr - 35 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/26/2009 1:01 AM (GMT -6)   
Oh. Yeah. I also take lots of vitamins, including B12. I don't take iron supplements though. They give me diarrhea. My body can handle the amount of iron in Cheerios; so I make sure I eat Cheerios every day. Eating Cheerios with milk doesn't seem to be bothering me either (although I don't recommend drinking milk when flaring), but I will often take Lactaid just in case.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/26/2009 7:29 AM (GMT -6)   
Your body is constantly fighting itself which can explain the fatigue. You have an invisible battle waging inside you and your body requires more rest to keep up. Fatigue is hard to deal with but a few tips, be sure to drink lots of water, if you are not taking a multi vitamin - start, vitamin B12 can help give you a natural boost and is not toxic in high doses, whatever your body doesn't need will be eliminated thru your urine, be sure to be in the sun at least 20 minutes a day - this actually works - yes I've tried it! lol If you start on iron supplements don't freak when you see your stool come out black :) This is normal
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/26/2009 1:57 PM (GMT -6)   
Red_34 said...
be sure to be in the sun at least 20 minutes a day - this actually works - yes I've tried it! lol
Haha I'm from the UK...we don't get sun every day :P
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/26/2009 2:53 PM (GMT -6)   
I posted this research here a little while back regarding the medical explanation for fatigue and chronic inflammatory diseases including IBD...

Disease linked to fatigue
Updated: Tue Feb. 17 2009 16:56:42



A research team at the University of Calgary believes they have discovered why diseases, like arthritis, make people so tired.


Dr. Mark Swain has found that inflammatory diseases like arthritis, inflammatory bowel disease and liver disease, allow so-called "immune" cells to infiltrate the brain and it's those cells that cause fatigue.


Dr. Swain says the fatigue can often be the worst part of a disease and that the next step is to reverse the process which in turn will stop the fatigue.


"I think when people have profound fatigue that's associated with inflammatory disease, they'll often say that it's the most incapacitating thing that they're experiencing from their disease and if they could only get over the fatigue, they could deal with the other aspects of their disease," says Dr. Mark Swain from the University of Calgary.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/26/2009 3:16 PM (GMT -6)   
qwerty1 said...
Red_34 said...
be sure to be in the sun at least 20 minutes a day - this actually works - yes I've tried it! lol
Haha I'm from the UK...we don't get sun every day :P

You may get more than us here in Michigan! LOL
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/26/2009 3:44 PM (GMT -6)   
Red is right! A lot of people attribute fatigue to low iron and vitamin deficiencies, but the truth is when you have a disease you may have all the iron and vitamins and still be fatigued. I have this problem depending on how much my UC is acting up. I also have light headedness depending on how my UC acting up, not related to dehydration or meds.

I don't want UC to rule my life. But the truth is when I can't get out of bed, I am ruled by the disease and I feel a lot better about it if I have made allowances in my life for that. I also feel less worried about getting sick again in my daily life when I am feeling good, because I know that I won't be completely dropping the ball on anything.

I remember a post a little while back about whether people have altered their live because of their UC. Many people still held full time jobs in which you could not miss a lot of work. I could not be one of those people. I also did not change my lifestyle because of UC, but I credit the LORD for leading me to where I can handle a very full life even with periods of illness.
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/26/2009 4:20 PM (GMT -6)   
nucid said...
Red is right! A lot of people attribute fatigue to low iron and vitamin deficiencies, but the truth is when you have a disease you may have all the iron and vitamins and still be fatigued.


It would be hard for me to know whether or not I'd still be fatigued if I wasn't anemic, because I always lose lots of blood and pass lots of blood clots when I'm flaring. However, eating Cheerios has really helped me gain back my energy.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 3/26/2009 3:24:23 PM (GMT-6)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 3/26/2009 10:34 PM (GMT -6)   

I deal with the fatigue by working early and hard, with little inactivity during my day.  Then i come home, take a nap, wake up and do dinner/computer/TV stuff, then early to bed.  Ideally I'd be going to gym after work, but I do manual labor for a living so I'm pretty drained at the end of my work day.  One thing that helps, but isn't for everyone, is I have a PRN prescription for Adderall, a stimulant.  I take it on days when I'm particularly tired and it helps me to not fall asleep while at work, plus gives me a little booost and makes me feel close to my old self.  My doc and I only do the Adderall because I tend to nod off at work during meetings and such.  I need to be busy in order to sty awake.  The fatigue is my biggest compalint about UC because I'm not motivated to do anyrhing after work.

 


 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: LDN 3.0mg, Florastor, Lialda, Allegra, multi-vitamin, buproprion, fluoxetine, vit E, D, zinc, and pancreatic enzymes.


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/26/2009 10:35 PM (GMT -6)   
Joy,

That's nice that eating Cheerios works for you. Maybe it will work for qwerty too. I wish I could just eat Cheerios and feel better. Really what I wish is that I could eat Cheerios and UC would go away!
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"

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