Cyclical Fatigue

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teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Cyclical Fatigue

Postby teachpdx » Mon Apr 25, 2016 1:45 pm

Hi All. I'm trying to rehab myself after HFS and a pevic adhesion and keep funning into the fatigue thing. I have a great PT and she suggested that I go to my PC and get blood tests to see if maybe I have low iron....I'm not convinced that's the problem because my fatigue is ALWAYS related to my level of activity. I can go for multiple days in a row of activity (when I usually don't cook dinner or do chores - food had been prepared in advance) and after my activity stint I usually have one day when I don't much get off the couch. I don't do alot of surfing on the internet, don't read, don't do much of anything other than what I HAVE to. Next day I get up with pretty good energy and get things done.

MY QUESTION:

Anyone have this experience? Stamina sucks and when you're down it's not like other people when they say they're tired. This is whole body/mind tired and I think would be very detrimental to having a fulltime job. All I see is:

- Work for 5 days
- Prepare food for work
- Rinse and repeat

This will not leave me time for anything else. I live alone and am responsible for every aspect of my life. Even those of you who have help. Would it be almost impossible if you did not have help?

Just trying to gain a perspective - not particularly looking for solutions.

Peace :?

Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Cyclical Fatigue

Postby teachpdx » Mon Apr 25, 2016 1:46 pm

I like "funning into fatigue" meant 'running into fatigue" Where's spellcheck?
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Jachut
Posts: 1134
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Cyclical Fatigue

Postby Jachut » Mon Apr 25, 2016 4:20 pm

Oh boy yes, this has been my life for five years. It is sooooo frustrating and depressing. I honestly cannot be the person I was and want to be again since cancer treatment.

I can only empathise because I dont have a lot of tips to cope. What I find is that any bout of activity results in a rebound fatigue that leaves me needing to sleep for almost an entire day but the worst thing about it is the moods - I get cranky and teary exactly like a small child and I just cant take pleasure in anything. I find it really hard being a teacher because working with small children is exhausting which means that my job qualifies as tough enough to leave me in that condition. On holidays I feel so much better! The biggest thing I miss is keeping fit - but any attempt to do more than I currently do will result in fatigue, bad moods and usually, if its intense enough (say a spin class), I actually get sick.

My tips for coping are few but this is what I do

Supplement with a multi and omega 3's religiously
take HRT (makes a huge difference to my mood)
I take a supplement called Sam-e off and on - when I really need to power on, it gives me a lot of energy and improves mood incredibly but it becomes less effective over time so I need to take it off and on
I bother my doctor constantly over iron - I had an infusion a few years ago and my ferritin level was 157 after that, its 33 now. I consider losing that much iron a problem, my gp only cares if I dip below the reference range. I am currently supplementing iron even though I am menopausal because I have noticed hair loss and feeling cold and I have no wish to get to the state I was in when I had the infusion. I"ll take it for a few months, get my storage up and stop for a while kinda thing. I firmly believe you can feel the effects of low iron without being anemic, low ferritin can be a big problem, and doctors are not a lot of help
Check out your sleeping arrangment - we bought a new bed, a king size, and its made a huge difference. Its not as hot as our previous thick pillow top and my husband is half a room away from me and doesnt disturb me as much, I'm sleeping much much better
adjust your life where you can - much as it pains me, I cannot exercise every day and I cannot run like I could a few years ago. Also, depending on some financial arrangements that may or may not come to pass, I'm thinking of cutting back on work next year.
I did make a huge improvement a year or two back when I was diagnosed with a bacterial imbalance in my gut (by an integrative gp) and took a course of antibiotics to kill off the bad stuff.

When I'm working is like you say - work, go home, barely have the energy to get dinner together, go to bed at 8.30 to the disappointed/disapproving glare of your spouse, rinse and repat for five days. Friday night have a fight with spouse about being too tired to do anything at all bar lie comatose on couch. Saturdays, get up, snap, cry, grumble through food shopping and go back to bed for four or five hours. Sunday, feel OK. Living with others doesnt offer much in the way of help, only provides people who dont understand that you're not lazy and not just tired and makes you feel guilty because you're not much fun to be with/live with. Forget any sort of romantic life!

None of that may be of any help to you but I really sympathise with how you'e feeling. I've been able to discover no reason for it and nobody has anything to offer (gp, surgeon) but antidepressants or counselling because well, if a woman is complaining of feeling worn out and exhausted constantly, well she must be depressed right?

Nik Colon

Re: Cyclical Fatigue

Postby Nik Colon » Mon Apr 25, 2016 4:37 pm

I have had CFS for so long that I don't know if it was because of undiagnosed cancer or not or my apnea. I still have it. I would say I only have maybe a couple days a month I feel decent. (I have no iron issues)
Last edited by Nik Colon on Mon Apr 25, 2016 9:00 pm, edited 2 times in total.

tif2112
Posts: 114
Joined: Wed Jul 04, 2012 4:23 pm
Facebook Username: tif2112
Location: Henderson, NV

Re: Cyclical Fatigue

Postby tif2112 » Mon Apr 25, 2016 4:49 pm

I have the same issue, tired as heck all the time. I have talked to Dr's and they keep saying Iron. I keep taking Iron, Folbic (Folic Acid + B's) and nothing is any different. Nobody understands and they just don't get it. I am also alone and do most everything on my own.
51 year old female
Henderson, Nv

T3N0M0
2012 DX - Rectosigmoid Mass, Colon Resection, rx - radiation and chemo
07-24-2014 NED
2014 englarge lymph nodes, biopsy of 1 negative
07-07-2015 even bigger enlarged lymph nodes, shown on MRI & CT
2015 biopsy of bone marrow, lymph nodes-negative
3-6-2018 still enlarged lymph nodes, no diagnosis

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sun-sparkled waves
Posts: 83
Joined: Wed Jan 10, 2007 4:27 am
Location: Canada

Re: Cyclical Fatigue

Postby sun-sparkled waves » Mon Apr 25, 2016 8:22 pm

I also have CFS and it is cyclical. I think having the chronic stress or fear of cancer coming back is one cause of CFS. Also having a dysfunctional immune system.... chronic stress and chemotherapy could be the cause.
I'm so exhausted right now, I can hardly write this.
There are three things I try to do every day
1 take a high quality omega 3 fish oil
2 walk outside in nature with my dogs
3 mindfulness meditation or some form of deep relaxation
Stage 2b in ascending colon age 34
Right Hemicolectomy 1994
5 FU and Levamisole for 6 months
Lynch Syndrome mutation MLH1
Bilateral Salpingectomy 2010

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Cyclical Fatigue

Postby teachpdx » Mon Apr 25, 2016 11:00 pm

Thank you for your replies. I think it's interesting that so far all women. Jachut I do think I had a low ferreting level but wouldn't you think it would be an issue ALL the time, not just when you've been working? I also kinda get sick when I do too much.

I get migraine type headaches without the aura. Actually went to ER after pushing too far because my head hurt so bad and nausea and actually threw up in ER. I almost never barf. Migraine med only thing that makes headache go away.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Jachut
Posts: 1134
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Cyclical Fatigue

Postby Jachut » Tue Apr 26, 2016 2:30 am

I don't find it strange that I don't have issues all the time as I see my body as being weakened by treatment - see I don't think I have chronic fatigue syndrome. I don't fit the mould apart from the tendency to get sick after exercise. Its not like I can barely function after having a shower and drying my hair. I just don't have what I consider normal energy and stamina, particularly given how fit I was pre cancer. I look at those people that are powerhouses, always on the go and I really envy them. I cant do that. I cant work AND keep house AND keep fit without something giving. Its the full on all day with 22 kids in my care kind, fifty things to do at once then dinner and cleaning after work demands, or the I'm going to run 5kms every day (and that's downgrading significantly for me) demands that wipe me out. Then I get teary and moody because I cant do what I want to do.

We're off to London for a holiday in 10 weeks time. My hubby has put together a fabulous itinerary and I'm really worried that I'm not going to be able to keep up with it. Even just the first few days - I fly on my own from Melbourne to meet him there, we have one easy day and then we're up at 5.30 on a train to France for a tour of the Somme battlefields, back to London that night and onto a full itinerary after that - I believe I"ll need two easy days to recover just from the trip to France after a 24 hour flight. Full on sightseeing day after day will be very difficult for me. It's that kind of fatigue. I also tend to say no to social events fearing tiredness afterwards. In fact, I think I have developed an anxiety disorder over the fear of being tired! I worry ahead of time about how I"m going to feel.

I also feel great on breaks from work because I go to bed at 8.30 and get up at 8.30- 9.00 rather than going to bed at say 11 and getting up at 6, a routine that was fine for me pre cancer but now I seem to really need 12 hours sleep a night and who has time for that?

Nik Colon

Re: Cyclical Fatigue

Postby Nik Colon » Tue Apr 26, 2016 7:50 am

Jachut wrote: In fact, I think I have developed an anxiety disorder over the fear of being tired! I worry ahead of time about how I"m going to feel.

I can understand that. I was and still am that way, with the added bathroom issues on top of it now.

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elise
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Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Cyclical Fatigue

Postby elise » Tue Apr 26, 2016 7:55 am

I get what you're saying. I do have low iron but even when addressed it doesn't solve the overall fatigue I have. For me, it cycles every day like this:

6:30am get up/shower/eat
9:00am BECOME USEFUL
- walk dogs
- do paperwork
- clean house
- go to the gym
- run errands
3:00pm HALF USEFUL
4:00pm FADING FAST
5:00pm DONE (do nothing time)
8-9pm get ready for bed

I plan my days and weeks knowing that I'm really only energetic for 5h a day. I am still on LTD and on disability. Will likely be forever.

I do find that meal prepping all my food for the week on 1 day helps a lot. I cook enough chicken, veggies and rice to get me thru the whole week. So all I have to do is heat and serve (or eat cold!)

I hate fatigue but I've accepted as part of my life :roll:

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

User avatar
elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Cyclical Fatigue

Postby elise » Tue Apr 26, 2016 7:58 am

Jachut wrote: the worst thing about it is the moods - I get cranky and teary exactly like a small child and I just cant take pleasure in anything.


Ahhh YES! I've been known to crumple to my kitchen floor and weep out of sheer exhaustion and inability to function. SUCKS!!!
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Cyclical Fatigue

Postby MissMolly » Tue Apr 26, 2016 8:18 am

Anyone who has had glucocorticosteroids (dexamethasone) as part of their pre-med IV infusions and is experiencing unrelenting fatigue should ask their MD to have a blood test to measure their baseline cortisol.

Use of dexamethasone (or prednisone or hydrocortisone) can cause suppression of the pituitary gland's communication with the adrenal glands = secondary adrenal insufficiency. Secondary adrenal insufficiency is not something on the radar of most MDs but should be for anyone who has been on long-term or high-dose glucocortisocsteroids.

Symptoms of secondary adrenal insufficiency: unrelenting fatigue (not relieved by rest); generalized muscle/joint pain; low blood pressure; nausea, low appetite; generalized malaise, feeling like an ongoing case of the flu.

A baseline am cortisol (before 8 am) will given an indication if further testing is warranted. A baseline cortisol lower than 5 ug/dl would be suspect for secondary adrenal insufficiency. An ACTH stimulation test would be the next step to define a diagnosis.

Adrenal insufficiency is a serious condition, not to be taken lightly. I, myself, have primary adrenal insufficiency (Addison's disease). It is no picnic to have low serum cortisol.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Cyclical Fatigue

Postby teachpdx » Tue Apr 26, 2016 9:36 am

Nik Colon wrote:
Jachut wrote: In fact, I think I have developed an anxiety disorder over the fear of being tired! I worry ahead of time about how I"m going to feel.

I can understand that. I was and still am that way, with the added bathroom issues on top of it now.


I constantly change my plans at the last minute due to fatigue & keep waiting to be kicked off a meetup group. Hard to plan in advance for fatigue. As a substitute teacher on SSD I can o my work 6 days per month and if a good job comes up I take it risking throwing off plans I thought I could do. I have bathroom issues as well & have been lucky enough to have had prep the few times it was a problem. But it is a big worry for me.

Don't want to eat the same food all the time to make sure I don't have any pro Lem's
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Jachut
Posts: 1134
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Cyclical Fatigue

Postby Jachut » Tue Apr 26, 2016 4:23 pm

MissMolly wrote:Anyone who has had glucocorticosteroids (dexamethasone) as part of their pre-med IV infusions and is experiencing unrelenting fatigue should ask their MD to have a blood test to measure their baseline cortisol.

Use of dexamethasone (or prednisone or hydrocortisone) can cause suppression of the pituitary gland's communication with the adrenal glands = secondary adrenal insufficiency. Secondary adrenal insufficiency is not something on the radar of most MDs but should be for anyone who has been on long-term or high-dose glucocortisocsteroids.

Symptoms of secondary adrenal insufficiency: unrelenting fatigue (not relieved by rest); generalized muscle/joint pain; low blood pressure; nausea, low appetite; generalized malaise, feeling like an ongoing case of the flu.

A baseline am cortisol (before 8 am) will given an indication if further testing is warranted. A baseline cortisol lower than 5 ug/dl would be suspect for secondary adrenal insufficiency. An ACTH stimulation test would be the next step to define a diagnosis.

Adrenal insufficiency is a serious condition, not to be taken lightly. I, myself, have primary adrenal insufficiency (Addison's disease). It is no picnic to have low serum cortisol.
- Karen -


Its frustrating, but my gp wouldnt have a bar of that unless Addison's was suspected! We're surrounded by bulk billing clinics here in Melbourne (massive, super clinics where you don't pay out of pocket, staffed by a huge variety of barely English speaking doctors). You can't formulate any long term relationship and there's no quarter given for anything "alternative" and the whole adrenal fatigue thing just isn't considered real by mainstream medicine. And from all my reading, there's no real treatment anyway other than lifestyle alteration which i the most frustrating part of fatigue in the first place. I find going to a doctor to complain about fatigue - even my surgeon, I don't see my oncologist any longer - is a waste of time.

The only way I can see to test cortisol for the average person, is to buy one of the kits online and well, you risk self diagnosing, being wrong etc. And again, if cortisol is not normal, what do you do about it anyway?

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Cyclical Fatigue

Postby MissMolly » Tue Apr 26, 2016 8:20 pm

Adrenal fatigue is the case where the HPA axis and adrenal glands are working, but the response is sluggish. Truly, the adrenal glands are exhausted - exhausted by unrelenting stress or other effect that causes the adrenal glands to be on overdrive.

You are correct. Adrenal fatigue is generally not recognized by mainstream MDs and mainstream medicine.

Adrenal insufficiency is not adrenal fatigue.

Adrenal insufficiency is a recognized clinical diagnosis. It has an IDC-9 code. It is a serious, life-threatening endocrine disorder.

Primary adrenal insufficiency is known as Addison's disease. It is due to failure of the adrenal medulla to produce cortisol, a life-essential hormone.

Secondary adrenal insufficiency is due to suppression of the pituitary gland to produce ACTH. ACTH communicates with the adrenal glands to instruct the adrenal glands to produce cortisol. Pituitary ACTH and the adrenal glands act in a feedback loop.

One cause of secondary adrenal insufficiency is brought on by the use of glucocoritcosteroids - as is often the case in the pre-meds for chemotherapy. Excess serum glucocorticosteroids (ex. dexamethasone) is interpreted by the pituitary gland as cause that it need not produce ACTH. Pituitary suppression results.

Clinical adrenal insufficiency will not correct through "lifestyle changes." Clinical adrenal insufficiency requires that one take hydrocortisone at a replacement level, generally for life. Cortisol is needed by every cell in the body.

My endocrinologist has mentioned to me that the number of cases of clinical adrenal insufficiency is one the rise, in part, due to the common use of dexamethasone as an IV pre med for chemotherapy.

A blood serum cortisol level of 5 ug/dl or less (morning blood draw around 8 am) would be suspect for clinical secondary adrenal insufficiency. A low reading would give reason to undergo what is called an ACTH stimulation test. This test is the "gold standard" for diagnosis adrenal insufficiency.

A morning baseline serum cortisol level is an easy test to ask your MD to add on the next time you have routine blood work done. The test does need to be done in the morning +/- 8 am - this is because the level of cortisol in the blood is not a fixed/static value but rather varies in a diurnal pattern through the day. The 8 am blood draw is compared to an expected statistical value for cortisol.

If only one person who may read this post is correctly diagnosed with secondary AI and successfully treated then this is reason enough to have increased awareness of the condition to those reading.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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