HELLO FOLKS,
I HAVE DEVELOPED MUSCLE FATIQUE AFTER 3YRS SINCE J- POUCH & GALL BLADDER REMOVAL AT SAME TIME. LARGE # BLOOD TESTS ONLY SHOWED AN ELEVATED CPK(270-320)OVER 6 MONTH PERIOD TESTED 5X WHICH IS AN ENSYME.I HAD A EMG WHICH CAME BACK ABNORMAL FOR NEUROPATHY, ALSO MUSCLE BYSOPY DONE THIS CAME BACK NORMAL. DOCTORS ARE SAYING EITHER VIRAL OR ABSORTION PROBLEM HAS DEVELOPED. DOES ANYONE HAVE FATIQUE PROBLEMS AND REMEDIES FOR BESIDE STEROIODAL WHICH DOC'S WANT TO SAVE TILL LATER IF I CAN'T DO ANY THING. RIGHT NOW PROBLEM HAS SLOWED ME DOWN A LOT IN ACTIVIES I CAN DO. I DO TAKE NUTRIENTS SUCH AS VITAMINS: B-50,ESTER C,CALICUM,B-12,FRUIT PLUS,FISH OIL 6000MG DAILY FOR LOW CHOLESTEROL. DIDN'T HAVE PROBLEM UNTIL 6 MONTHS AGO I ALSO EAT YOGURT DAILY INSTEAD OF PROBIOTICS I WAS TAKING COULD THIS CAUSE PROBLEMS DOC'S: SURGEON,RHUEMATOGIST,NEUROLOGIST & GP SAY NO. I WOULD LIKE TO GET SOME RELIEF. ALSO USE LOMITAL DAILY FOR BOWEL CONTROL.
THANKS,
GOD BLESS YOU ALL
BILL

This is what I found when I did a
Google search. I don't know much about it, but there seems to be many reasons related to high levels that could cause fatigue. You might want to add a cardiologist to your mix of doctors just to rule out heart issues. Have you been checked for Celiac disease? Here's the link. You can click on some of the conditions to find out more too:

http://health.allrefer.com/health/cpk-results.html

I hope they find something soon so you can feel normal again.

By the way, is there a reason you have typed in all caps? It's very hard to read, but sometimes people do it because it's hard for them to see or something like that. If not, please don't use all caps. I'd rather read sentences without capital letters in the right place than all caps.

Take care and keep us updated (even if it IS all caps ! )
Lori

Sorry about caps never really type much EKG and other levels in the numberous blood tests so for are normal will bring up Cardologists to Gp
thanks for input

CPK is not specific to heart problems, but is elevated whenever there is any muscle damage. This can be in a variety of places, and is more likely to be skeletal when it is ongoing. I am certain they would have done isoenzymes to rule out heart, lung, or brain damage.

So, if you are having long term elevated CPK and associated fatigue, this would be consistent with something going on in your muscles. If you were on a statin drug, I would suspect that first. If you are having generalized muscles aches and pains associated with this, I would lean towards fibromyalgia. Muscle biopsy ruled out polymysitis, rhabdomyolysis

If they are suspecting a viral origin, I would hope you have been screened for Epstein-Barr, mononucleosis, hepatitis, to name a few.

Once all the common stuff has been ruled out, what is left is the uncommon stuff, such as metabolic problems. I won't get into the details of that, but here is a link to some good information:

http://www.arthritis.org/research/bulletin/vol51no3/51_3_printable.asp

It sounds like you have a good team of doctors working on this and I am sure eventually, they will get it sorted out.

Jan

Jan thanks for input Doc's leaning toward a viral myopathy or a metabolic myopathies still looking. Go to GI Doc 6/5 hope to get more answers later. Real tired causes leakage when up and moving I do take lomital daily to help.
Thanks for input
Bill

I'm tired and sore all the time. Coffee and energy drinks keep me going.

I give terrible advice. Don't listen to me But no really, I know someone who had all types of cancer and was exhausted all the time. He now takes L-Carnitine at 330 mg every morning and said it's been a lifesaver. It's the same stuff found in energy drinks. I have no idea as to how safe this stuff is, so again, don't listen to me

Hey Bill,

Yeah I've been fatigued since October 2002. I've had just about every test know to man done, and they just keep telling me I'm fine. I feel very drunk and confused ALL the time. I can barely do my job and I can NEVER have fun. I am a living piece of meat. Exercise, diet and lifestyle changes don't fix it. You are one of the few people I've seen on here that has a similar problem to myself.

If you find that anything fixes this, or the docs find out what's going on please lemme know. Good luck bro. Keep in touch.

Krazy Kenny

Krasy Kenny'
I will post if Doc's find anything also glad some one else feels tired and run down all the time. It gets tough some times but life is worth living so we have to push on. Go to GI Doc on 6/5 I am sure more test involved.
GOD Bless
Bill

I read this post with great interest. I have suffered from extreme fatigue in the past. However, I have made some gains. I'm not, and never really was, a "ball of fire" and the majority of the time (although the size of that majority is slowly declining) lack the ability to be "all day tough".

I still have a great deal of inflammation present in my body (from whatever pathogen that obviously has not yet been eradicated). I believe this inflammation is one of the reasons for much of the fatigue. It definitely wears you down. Doctors with which I have consulted have always told me this "background inflammation" is "normal" for someone who had UC. This "normal" comment still leaves me greatly unsettled.

I can assimilate with a lot of the comments made. I felt very zombie-ish for the longest time, couldn't concentrate, felt spacy, felt like I existed and wasn't truly living, could barely get through the day at work, and my social life continually diminished due to the overwhelming fatigue and desire to rest. The gains I have made I attribute to many of things that Krazy Kenny has found to be ineffective. Dietary changes, exercise, and lifestyle changes. While I would continue to work with the doctors for a proper diagnosis, the following have helped me:

1) Elmination of any offending foods. While the need to eliminate dairy become rather obvious to me after my operation, wheat was not. I always used to feel so sluggish and tired after a meal. Once I eliminated wheat (and took it a step further to completely eliminate gluten), I no longer suffer this post-meal lethargy.
2) Proper hydration. I can't always determine, through urine or lack thereof, lack of saliva, etc. when I'm on the road to dehydration. One of the biggest indicators for me is that I start to lose a lot of energy and get very sluggish. Drink! I'm sure that this may get mired in some controversy, but I add 1/4 teaspoon of SEA SALT per quart of water for better absorbtion. Otherwise, plain water will likely go right through me. If water doesn't work, drink the sports drinks.
3) Use of supplements. If you incorporate supplements into your daily routine, seek out the MOST ABSORBABLE form that exists. I highly rely on liquid forms, and powdered forms mixed in a liquid. Talk to your local health store owner about which forms might be the best for you. I found that the poor quality, mass-marketed supplements did nothing for me. Focus on the fundamental vitamins and minerals. Disease and medications can wash essential vitamins and minerals out of your body over time. I don't recommend getting carried away and over-ingesting supplements. You'll waste a lot of money otherwise. It may take a little experimenting to find which forms of supplements work best for you.
4) I know it sounds cliche, but listen to your body. Exercise, but don't exercise to the point of exhaustion. Strive for consistency of duration and frequency in your exercise routine. If you are just starting, fight through the accompanying fatigue. It's very likely to get better. Rest when you need to rest. Get more sleep when your body tells you that you need more sleep. Slow down and give yourself a break from time to time. Eat quality foods, your body will thank you. The cliches could continue ad nauseam, but I believe that my body is not going to treat me well if I don't treat it well.
5)Give it time. None of this happened overnight. It won't be corrected overnight either.

Good luck.

I also had a real fatigue issue, which turned out to be related to my spondylitis. As above, chronic inflammation leads to chronic fatigue. After diagnosis and proper treatment, things improved a lot, but I still have those days where I get overwhelmed with fatigue and just have to take a nap. I agree 100% on the sleep, nutrition and hydration front. You have to rule out those things before you can zero in on medical issues.

I also do not buy the concept of background inflammation as being normal if you have IBD. It may be common, but I do not think it is normal or should be accepted as the final word (especially after you have your colon removed). That's like taking your car into the shop for a problem and the mechanic's line is, "They all do that." Well, that may be true, but fix it...

Jan

Have you been tested for pernicious anemia yet?

It's amazing but I was just about to post and ask for help about Chronic fatigue. Yesterday I met with my surgeon to discuss the possibility of a cuffectomy because I have been suffering from unreslovable cuffitis now for 2 years.My symptoms are of rectal pain which has gradually improved to a 1-2/10 now, mild rectal bleeding off and on which improves with rectal steroids,and extreme FATUIGE with muscle ache. A recent biopsy showed active mild colitis in the cuff.
So,my GI doc. thought that my fatigue is related to this inflammatory process and since this cuffitis has not really responded to steroids, a cuffectomy may do the trick and my symptoms of fatigue may dissapear.
But here is what my surgeon told me:
1. There is no way to know that my fatigue is from my cuffitis which in itself is questionable, he says, because there are a lot of people with similar findings on biopsy etc. who are doing perfectly well. He says that doing a cuffectomy may not resolve my fatigue.
2.He thinks that fatigue may be a part of the syndrome of IBD and doing a cuffectomy will not help,even if I have chronic cuffitis. And there are no specific tests for this.
I am feeling so depressed because I have to take oxycontin to work and function and the fatigue is still very debilitating. I had thought that doing a cuffectomy may help get rid of the inflammation and I would feel much better. There is no way of delineating the cause of fatigue and I hate to go through this major surgery to have the same old fatigue.
Anyone with any answers or experience with this? Jan, can your proffer some advice? I plan to get bloodwork for cortisol levels, vitB12, c-reactive protein and ESR. But I still don't know if that will help with knowing whether to go ahead with the surgery.
Sorry for the long post---
Rani

Hi Jan,
In response, I was told that even though my colon was removed I still will always have UC and inflamation from it cause it's in my bloods.
And yes, I am always complaining I'm tired. I am not sure if it's from the chronic inflamation ie pouchitis, or just age, or that cause I was very sick for a long time that I will never ever be back to full speed. I find that I have to pace myself throughout the day. I eat good foods and take vitimins and have my bloods checked every 6 months for signs of anemia but I'm still tired.
PS Rani-I sent you a private message
susan

Susan, I see what you are saying and you are right that your genetic make-up remain the same regardless whether or not your colon is out. But, if you have a colectomy and do not have pouchitis, you need to keep looking. If you have chronic pouchitis, there is a source of chronic inflammation, so it makes sense.

My point was that if you are being told that if you have this diagnosis of UC, just live with chronic fatigue and stop looking for answers, then that is not acceptable. Blood counts for anemia only look at one possible source of fatigue.

Rani, I would want the full work up to rule out other causes of fatigue(such as lupus or other systemic collagen diseases, rheumatic diseases, viral causes like Epstein-Barr, etc.), before undergoing pouch advancement surgery to remove the rectal cuff. But, even if everything else is negative, they really cannot guarantee that the surgery would solve the problem. It is likely that your surgeon is just being very honest with you and does not want you to have unrealistic expectations, because he does not have the same confidence as you do. But, you do know one thing- you have chronic cuffitis that is not well controlled with the current treatment. The fact that you have had as much improvement in pain as you have probably makes your surgeon more willing to continue with the status quo. Of course, he is not the one living with it every day.

Think of what your options are (once you have ruled out everything else as a contributing cause), then go with the option that makes the most sense to you. My only other suggestion would be a second opinion.

1. Continue as things are now.
2. Have pouch advancement surgery to remove the rectal cuff.
3. Have a complete pouch reconstruction.
4. Have your pouch removed and revert to either a continent ostomy or end ileostomy.

Jan

This message has been edited. Last edited by: Jan Dollar,

Hi Jan,
You definitely have put things in perspective in the most logical manner.
The first thing I have already done is come off all narcotics cold turkey---I read up about it and felt my fatigue may be due to withdrawal symptoms in between doses and then I would take my oxycontin and feel energetic again. Shell Worrall has helped me tremendously and showed me some older posts with similar symptoms etc. Yes, it is very difficult to deal with the withdrawal from physical dependence, I can only imagine what it would be like to deal with psychological dependence as well which thankfully I don't have.
Anyhow, now that the worst part is over and now my main complaint is weakness/tiredness and hopefully my own endorphins will start kicking in within a week; the rectal pain is a 1-2 and quite bearable. If it stays like this, the next step is ???? I don't think i want a reversal even if the pain is a 1 because of the real potential of an increase once stool passes thru'.
So I think I am heading for a cuffectomy. I shall definitely get all my tests done to rule out what you have suggested Jan. Thank you so much!
Susan thanks also, you are so encouraging and I am heading towards the cuffectomy you are suggesting but with everything else ruled out . Thank you for your support.
Rani