I just found this great resource on fatigue

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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2010 12:15 AM (GMT -7)   
and thought many people here might find it helpful too, especially when trying to explain symptoms to others.

http://www.rdns.org.au/assets/research/Chronic_illness_docs/Booklet_Fatigue.pdf


I found that I got a little emotional, seeing myself in some of the descriptions...

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

dreamlady
New Member


Date Joined May 2010
Total Posts : 19
   Posted 8/11/2010 12:44 AM (GMT -7)   
 
Thanks for sharing this Ivy.  I also can relate to a lot of this information - especially at the moment.  Fatigue seems to be an ever present symptom of this disease in varying degrees from day to day!
 
DREAMLADY
 
dx April 2010
Current Meds:  Tapering Pred 5mg (almost over), Imuran 150mg, Vit D, Coversyl 10mg, Somac 20mg

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2010 12:45 AM (GMT -7)   
Thanks, Dreamlady.

I don't think I've ever seen it described so well, or so compassionately and comprehensively.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2010 12:45 AM (GMT -7)   
ps. I'm sorry your fatigue is bad just now.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/11/2010 4:56 AM (GMT -7)   
Thanks so much for posting this, Ivy. I think fatigue is the hardest part of this DD. It reminds me constantly that I am not well. I really appreciate reading this and recognizing that others understand what I feel like. It made me emotional too. I'm going to try to read their other booklets too. Thanks again.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Pregnancy Vitamins for iron etc., Salofalk suppositories as needed.

Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 8/11/2010 9:59 AM (GMT -7)   
Ivy that is amazing. Literally made me cry in parts, as it was like it was "ME" saying these things. No one, sometimes even our docs, understand how fatigue affects the lives of folks like us with chronic health issues. Right now I am having a really hard time recovering from this last surgery. All my tests results are coming back normal, but that doesn't explain why I feel so BAD. Its not in my head!! Something is wrong with me, but unless you have some screwy tests results, they blow you off. I could go on and on, but I won't. But just wanted to let you know that booklet really resonated with me too. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 8/11/2010 7:04 PM (GMT -7)   
Thank you for posting this Ivy :-)  
 I too felt teary reading it and finding like-wise people. I feel like printing it and showing all those people in my life who expect so much from me.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2010 8:19 PM (GMT -7)   
I feel like printing it and showing all those people in my life who expect so much from me.

So do I!!!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 8/11/2010 9:31 PM (GMT -7)   
It's good to see that what we're going through is not in our heads! I feel so lazy and unmotivated all the time.

CD diagnosed in 2007
Spent a whole year wondering why no drugs worked for me, only to find out it was probably c-diff (which didn't show up with the regular tests) the entire time. Now I'm retrying all the meds and finding success!
Started Imuran in June 2010

grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 8/12/2010 10:21 AM (GMT -7)   
Thanks Ivy! Like so many other symptoms of this DD, it felt wonderful to feel validated! I can and have dealt with the D, the pain, the gas, the urgency, but it's so hard to fight through the fatigue. I feel like I give so much to everyone else, taking care of my family, work, friends, that I have nothing left at the end of the day to give myself except to lay on my bed and just try to give my body the physical, mental, and emotional rest that it craves.
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, Glucosamine, D3, calcium, potassium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!

exit 4
Regular Member


Date Joined Apr 2009
Total Posts : 148
   Posted 8/12/2010 12:26 PM (GMT -7)   
Wow, I fell it spoke about me!!
Always remember to forget the troubles that pass your way;
BUT NEVER forget the blessings that come each day.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/12/2010 3:05 PM (GMT -7)   
Did anyone else relate to the part where it said that you're so busy *making* yourself do things and *getting* through things that you don't have any energy left to actually enjoy them?

Boy! did I relate to that.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

gumby44
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Date Joined Nov 2007
Total Posts : 4101
   Posted 8/12/2010 3:24 PM (GMT -7)   
The booklet was really well done. I am a mental health therapist. I am going to contact the authors to see if I can order some of the booklets for my office. The other topics look interesting too. Thanks for sharing it!
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics

CrohnsCrone
Regular Member


Date Joined Jun 2008
Total Posts : 25
   Posted 8/12/2010 8:40 PM (GMT -7)   
I've saved a copy - thanks for the link.

I've stopped talking to doctors about it because their attitude seems to be - we've done the tests, everything is fine so it's just in your head. My favourite was (when I was in my 30s) you are burning the candle at both ends - when I told him if I didn't have the shopping cart to lean on, I wouldn't have the energy to buy food.

One of the parts that really resonated with me was sleeping away half of the weekend just to recuperate from the week.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/13/2010 5:48 AM (GMT -7)   
Thank you for this article Ivy. It was comforting to me to read others have the same issues. Since having fatigue, I have gained 50 pounds. My PCP totally doesn't understand it. The GI does. I used to think it was depression before I got diagnosed with IBD. I realized that I just don't move around and do as much physical activity as I once did. My work atmosphere doesn't help. They expect people to be married to their job and work all kinds of hours. They look at people who don't do this as slackers. I have tried to explain to my boss that I just can't do so me of these weekend duties and all this traveling. I think they are starting to get the message.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/14/2010 10:26 AM (GMT -7)   
Bumped up for Drake:)
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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