The continuing battle with fatigue

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Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/18/2017 3:15 PM (GMT -6)   
I've posted on here before about my battles with fatigue, and while I thought I'd gotten to the bottom of it, the root issues are still there.

From about October last year, I've been having terrible fatigue in various forms. Earlier this year, when it was far worse, I decided I'd focus on one aspect of it - the diet-related component. I was being smashed around by what I now believe was carb addiction, causing terrible lethargy and lightheadedness when I was hungry, and a 'carb flu' (feeling completely wiped out, incapable of doing much other than lying down) after I had fulfilled my hunger. I managed to get rid of that by reducing my carb and sugar intake, and replacing with more whole foods, fats, and proteins. The improvements were pretty quick initially, but then I went back to where I'd come from for a while. Eventually, my body adjusted and has come away a lot better as a result.

However, I'm continuing to experience fatigue and brain fog after most kinds of physical exertion.

Pretend you've been sick with a heavy cold or flu. Now imagine how it feels when you start exercising too soon. You have way less energy, very little stamina, you heat up prematurely, you sweat a lot, your brain turns to mush, and afterward you're left feeling far worse than when you began. Ok... THAT is how I feel after I exercise. I've read in a few places people suggesting 'just dig in and do it, you'll feel better eventually'.

The problem is, I don't. I feel worse eventually. If I do even moderate exercise every week day, by Friday morning I'll be struggling to get out of bed.

My doctor ran a lot of bloods but found nothing. Thyroid, B12, Cortisol, Electrolytes, Iron, CRP, liver function, creatinine, Calcium//Phosphorus and screening for Type 2 Diabetes, and there was no cause for concern anywhere.

I'm not even sure this is anything to do with UC. It all started last year after I had two really bad illnesses over winter, and never went away. I've thought about getting something to help boost my immune system, but looking at the science on that, all that's really proven is Vit D, sleep, eat healthy, reduce stress, and exercise (the last one's ironic).

Does my exercise experience sound familiar to anyone else with UC?

Post Edited (Gitch) : 6/18/2017 3:20:17 PM (GMT-6)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10023
   Posted 6/18/2017 5:05 PM (GMT -6)   
Sorry to hear that you're still struggling. Have you ever been tested for lupus? /butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Lialda, and rowasa

I swore to myself that once i was off of prednisone that I'd burn both the pills and bottle with great hedonistic enjoyment: booze, food, and dance. And if I ever need a colectomy... ;-)

Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/18/2017 6:42 PM (GMT -6)   
iPoop said...
Have you ever been tested for lupus?


No I haven't. However, looking at the list of symptoms, the only ones that apply to me really are fatigue, and malaise.

Natof9
Regular Member


Date Joined Jul 2016
Total Posts : 81
   Posted 6/19/2017 7:08 PM (GMT -6)   
Are you on any medication at the moment or tapering off? If it's not a vitamin deficiency/anemia it could be that your adrenal system is just fried. Maybe you can do a ACTH test to determine if it's adrenal fatigue.
Months after tapering off prednisone I still had pretty bad adrenal fatigue, but once I eliminated processed sugar/bread and supplemented with herbal "adrenal targeting" teas my energy slowly returned to me and was able to run/swim again. Good luck!
http://colitishealingnat.tumblr.com/
27 F- Summer 2015 diagnosed Ulcerative Colitis
Past medications: Sulfazine, Sulfolax, Prednisone, Remicade
Currently: No meds, Paleo, plant and fruit based diet, fermented food, intermittent fasting, juicing, vitamin IV therapy.

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5538
   Posted 6/19/2017 7:31 PM (GMT -6)   
I'm sure you've had standard tests done but just in case I'll add my experiences.
The times I've had extreme fatigue were: anemia unrelated to UC, RX med for UC (6mp was the RX), extreme constipation, and most recently high blood pressure. All were fixed and no fatigue now.

I've heard that fibromyalgia causes extreme fatigue.
But the one I think you should look into is chronic fatigue syndrome because it's an auto immune related condition.
/en.wikipedia.org/wiki/Chronic_fatigue_syndrome

Before you go deep into it though scroll down to "differential diagnoses" to see what other similar conditions need to be ruled out before focusing on that. There are quite a few including Epstein-Barre which I did not know was infection-related.

What about Lyme disease? That seems on everyone's radar and this year is a boom year for ticks.

You may need to see a specialist beyond your general practitioner. Good luck.

peachlover
New Member


Date Joined Apr 2014
Total Posts : 14
   Posted 6/19/2017 8:33 PM (GMT -6)   
Hi Gitch,

I'm having the same thing. I feel like I'm going to fall asleep at my desk or driving my car sometimes. I went on a hike on vacation and sat down for a rest and nodded off. Some days there isn't enough coffee in the to resurrect me. I'm having a mild flair now so I figured it must e from this disease.

I've tried exercise, higher protein/lower carb diet, and 7-keto DHEA. My bloodwork (CBC & Chemistries) are normal. I take 100mg Imuran, Lialda, 60mg Cymbalta, & Protonix.

Any suggestions would help me too.

Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/19/2017 8:37 PM (GMT -6)   
The only meds I'm on right now are mesalamine (2.4g daily orally, and a 1g suppository once a week). I've never been on pred for my UC. Only ever mesalamine.

You have triggered a thought, however. One of the two illnesses I had last year that set this off resulted in me going on antibiotics for a sinus infection. It could be I need to REALLY work on boosting my gut bacteria.

I've had glandular fever before (Epstein-Barr virus) and the crashes I experienced for years after that weren't unlike those I've been having recently. Adrenal Fatigue was another thing that came up a lot when I googled my symptoms. The thing is, I've been treating myself for that the way I've done it before, and things haven't really been improving.

On Lyme disease, I've not had any skin issues that would suggest that.

The other thing I'm considering is that the whole thing could have a major psychosomatic component to it. I know this turned out to be the cause of the mysterious back pain I came down with after I started noticing UC symptoms. I was sent for x-rays, and there was nothing wrong. Yet I was in agony at nights. It turned out to be what's known as TMS (tension myositis syndrome) which is cured by mindset and lifestyle changes. This may well be the same. So far, it has all the hallmarks of that nasty condition.
Proctosigmoiditis, DX 3/2/2016
Mesalamine 2.4g/day orally, 1.0g/week rectally

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1542
   Posted 6/19/2017 9:19 PM (GMT -6)   
The fatigue could be from all sorts of things - the UC itself can cause bad fatigue in some people. Other conditions, viruses such as mentioned (EBV), thyroid problems, unrecognized sleep disorders, etc. The list is practically limitless.

As for the back pain you mentioned being TMS, keep in mind that TMS is not acknowledged by mainstream medicine as a real condition. I've read Sarno's book - and I think it's bunk. You mentioned x-rays not showing anything, but an x-ray alone can't see nearly enough detail to determine whether or not a person has a physical issue causing back pain; even MRIs often aren't enough to determine the cause. But TMS? I'm skeptical, very, very skeptical.

Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/19/2017 9:58 PM (GMT -6)   
Natof9, can you let me know what teas you were taking that you found helpful in your recovery?

beave, whether TMS is acknowledged by mainstream medicine or not, there's no denying the fact that reading Sarno's book and applying the principles cured me of my back pain, while mainstream medicine took my money but shrugged its shoulders. It's a bit like the old statement "xyz was found to be no more effective than a placebo". But why was a placebo more effective than nothing?
Proctosigmoiditis, DX 3/2/2016
Mesalamine 2.4g/day orally, 1.0g/week rectally

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1542
   Posted 6/19/2017 10:02 PM (GMT -6)   
Sounds like you recognize that it's placebo effect. I agree.

Do you also agree with him that ulcerative colitis is a psychosomatic condition? He says so in his book.

Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/19/2017 10:26 PM (GMT -6)   
Give a builder a hammer, and everything looks like a nail. I think it's easy to over-diagnose everything as being psychosomatic. That's one of the dangers of TMS, in that it's easy to apply that title to virtually every symptom you experience and miss getting a correct diagnosis and appropriate treatment when it isn't. I don't know what UC is caused by, but let's be honest, nor does western medicine. They really just know what it is, and how to treat it. I don't personally think it's psychosomatic, but that's just an irrational choice I have personally made.

This (ease of applying the title 'psychosomatic' to everything) is the reason why my first approach has always been 'see a doctor', then look for other possible factors if they can't identify anything. Unfortunately, my track record of treating chronic fatigue through doctors so far has been unsuccessful every single time. When it was post-viral adrenal fatigue, I got that advice from a health store after repeat visits to a doctor and tests showing nothing. This time round, I'm no closer to having a solution. I've made improvements myself by changing my diet. Ultimately, however, I'm still suffering.
Proctosigmoiditis, DX 3/2/2016
Mesalamine 2.4g/day orally, 1.0g/week rectally

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2993
   Posted 6/20/2017 5:10 AM (GMT -6)   
I'm continuing to experience fatigue and brain fog after most kinds of physical exertion.

I would get my blood sugar tested for hypoglycemia. Also brain fog is a classic symptom of those of us who are sensitive to gluten.
Male, born 1951, DX IBD Feb08. No meds, allergic to Mesalamine. Food diary instead of SCD or Paleo.
When needed VSL#3DS sprinkled over powdered psyllium seed is very helpful.

Lactobacillus Reuteri (NCIMB 30242), Culturelle, Saccharomyces boulardii.
Fish oil, curcumin, extra D3, magnesium, multivitamin, glutamine when gut repair needed.

Resistant Starch and lots of fruit & vegetables (but no cruciferous), No Gluten, no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, no carrageenan, no GMO foods saturated with Roundup.
Nature created all of the locks, therefore Nature has all of the keys

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4608
   Posted 6/20/2017 5:44 AM (GMT -6)   
I would ask for a b-12 shot and see if it helps, no real downside to it. I just moved from once a month to twice a month and it's making a difference. My b-12 levels were borderline but good, ever since increasing my levels I've felt much better.

You could go to a hematologist and ask them to do a complete work up, or at least discuss your systems with the dr.

You could also try an infectious disease doctor, might be Lymes or something else.

Are you depressed? Since we have chronic illnesses we are more at risk to battle depression.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/20/2017 3:46 PM (GMT -6)   
I bought myself a blood glucose meter and used that when I was having the heavy crashes and brain fog episodes. Oddly, even when I was ravenous, it wasn't showing anything particularly low. 'Brain fog' was perhaps not the right phrase to use to describe the post-exercise symptoms. It's more of a 'hot and flushed' feeling.

I may have another shot at cutting back on gluten for a week or so and seeing if it makes any difference. I tried going GF before I was DX with UC, but somewhere along the way, I switched back to my regular diet. The timing of that may well coincide with the onset of these symptoms. It's certainly worth a shot anyway.

I don't think I am depressed at the moment, although I know I have been on and off since UC hit. But I do know that sometimes, a feeling of complete overwhelm can drag me down pretty hard and sap my energy. So I'm aware of the mind/body connection in that aspect.

That is a good point that this may need to go beyond my GP, and to a specialist.

Over the last few days, I've been forcing myself to exercise, but have been deliberately keeping myself a) cooler and b) ideally below 140bpm. I've been feeling a lot better. There is also the possibility that, because I stopped exercising for so long after I was sick, my fitness simply dropped to levels it hadn't hit for years, and I began to associate a normal unfit exercise response with 'I'm sick, I have a problem'. All this problem really is is a much lower ceiling of how hard I can push myself. I'm hoping that, by weaning myself back into it, and getting plenty of sleep, I might be able to turn this around.
Proctosigmoiditis, DX 3/2/2016
Mesalamine 2.4g/day orally, 1.0g/week rectally

Gitch
Regular Member


Date Joined Jan 2016
Total Posts : 34
   Posted 6/21/2017 3:24 AM (GMT -6)   
ks1905 said...
Are you depressed? Since we have chronic illnesses we are more at risk to battle depression.


Actually, on reflection, I think you might well have nailed it there. It would explain an awful lot of things. I think it's time for some deep self-reflection, as I suspect I know what may be the cause of it.

Thanks so much!

ElpisUnbreakable
Regular Member


Date Joined May 2015
Total Posts : 468
   Posted 6/21/2017 6:53 AM (GMT -6)   
I struggled with fatigue for 2 years. I used to have to sleep 10 hours a day. I still worked out. I ate well. My blood work (once out of the flare) was like an 18 year old. But, nothing seemed to lift the fog.

Then one day I got these healthy versions of Redbull called Hi-ball for my boyfriend. I was trying to get him to at least drink caffeine without all the additives. So I tried one. Now, I already drink a lot of coffee (I know bad) but I found that this drink really gave me a boost that was different from coffee and I was able to eliminate my 2 hr naps which was killing my career. I think it is the B vitamins that gives me a boost. All those caffeine drinks on the market are loaded with B-vitamins. I am not going to recommend drinking Hi-ball because it has enough sugar in it to send a horse into a diabetic coma. But maybe try some B vitamins?

I also think that my naps were hurting me emotionally. I think when we give into the fatigue it makes it worse. If you can find a way to push through it, then you might have more energy.

And I know anytime someone says "push through it" you want to punch them in the face. (at least I did) but if you can find small ways every day to not give into the fatigue, I do think you will feel better.
Remicade every 4-5 weeks.

Past medications: Asacol HD 800mg, Pred, Uceris, Imuran,
Current: Remicade, Canasa
Aloe Vera Enemas
Gluten Free low carb diet, Green tea extract
VitD, Fish Oil, Grape Seed Extract, Adrenal Fatigue, VSL #3
Hope. Lots of Hope

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4608
   Posted 6/21/2017 7:12 PM (GMT -6)   
B-12 injections work much better than b-12 pills, it has to build up in your system so the injections work better.

Ask for a b-12 injection and see if it helps, there is no risk with b-12.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226
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