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Tiredness roundup - Rachael
woodpijn
woodpijn
Tiredness roundup
Description of symptoms:
  • Tiredness/fatigue
    • chronic (many years - which rules out several acute or short-term conditions)
    • variable (some v bad days, some v good)
    • despite getting plenty of sleep - now Z is sleeping through, I usually get 8 hours, sometimes even 9 or 10 - but still often feel sleepy and need naps
  • Thirst - I need to drink much more than most people, and often feel thirsty or dehydrated
  • Appetite - I feel very hungry by, or before, mealtimes; I cope badly with hunger; I eat quite a lot, but am fairly thin.
The tiredness is the important problem. If the tiredness went away and the thirst and hunger remained I would be satisfied; I only mention them in case they're relevant diagnostically.

Subjective description of tiredness:
Low energy, inability to do things, need to sit or lie down or sleep even though I want to be doing things. Foggy head, heavy limbs. Difficult to be patient with the kids (they make noise and demand things, which is perfectly reasonable of them, but I want to rest). Difficult to be creative and proactive with the kids (it takes too much effort, so I end up letting them watch TV far too much). I procrastinate on chores, admin, etc - I feel like I don't have the energy, and hope I might do later. I don't get to do things I want to do because I'm too tired - I sometimes go to bed straight after the kids, and miss out on an evening, and sometimes I have to cancel evening plans with friends because I'm too tired (just plans to sit around chatting for a couple of hours, not go clubbing until 2am). Often I really want to be doing something creative or playing a game but I don't have the energy so just surf the internet. I feel like Alex is taking up a lot of the slack - taking the kids so I can have a daytime nap or break - and I would be coping a lot worse without this.
On good days, it's so much better - I can be both patient and proactive with the kids, and we actually do things together, and I get things done around the house, and I get to do things I enjoy.

Possibilities:
  • Something blood sugar related - not diabetes, but something similar? I'd be curious to borrow a blood sugar test kit and see if there's a correlation with subjective tiredness.

  • Sleep quality - I did an overnight test at the sleep clinic in Papworth, and there my subjectively perceived sleep quality was better than the recorded data (apparently with most people it's the other way round - they say they didn't sleep a wink, and the recordings say they did). So maybe I think I'm sleeping well, but am actually sleeping badly, so am tired. Would explain day-to-day variation, if some nights I sleep better than others. So maybe I should take sleep-quality advice I've previously ignored because sleep is subjectively good. Sleep clinic just said I'm a "long sleeper." They prescribed amphetamines but I didn't take them because we were TTC Zoe at the time.

  • Depression - doctors often suggest this, but I don't feel depressed, or have any other symptoms of it. I've read descriptions of what depression is like and really don't recognise it.

  • Atypical depression - apparently this is like depression except you cheer up when good things happen (which makes me wonder how that's different from just not having depression). That fits with the non-constant nature of my condition, and its symptoms also include hypersomnia and increased appetite - but also some symptoms I don't have, like weight gain, and oversensitivity to rejection (I don't think I have this - what do people who know me think?) And again, I don't feel "depressed", even on the bad days, just tired. I am still able to be happy and enjoy things on those days, within the limits of the tiredness; and any emotional effects, like irritability, seem to be a consequence of tiredness, like they would be in anyone who's tired. OTOH, I do find the tiredness seems to alleviate for a few days whenever I come up with an Exciting New Theory about it, so maybe that's the atypical depression responding to hopeful events?

  • Chronic fatigue syndrome. I don't like this because it's kind of a last-resort diagnosis - like "you're tired, we don't know why, we've ruled out most other things" - and there's no actual test for it, and no cure. I don't have the other symptoms that often go with it, like joint pain or bowel problems. No one really knows what causes CFS, but there is the "central governor theory" - the mechanism which normally shuts off functioning and forces you to rest at a point short of actual exhaustion (but could be overridden by adrenaline if you suddenly get chased by a tiger or something). The hypothesis is that this is set too sensitive in CFS patients, so their body thinks they're close to exhaustion when they're not, and shuts down. I wonder if it's possible to change this set point? Hypnosis or something?


Ruled out:
Diabetes (this has been ruled out multiple times, but they keep testing for it anyway because the symptoms seem to match so well)
Anaemia
Diabetes insipidus (kidneys removing too much water, causing dehydration)
Celiac
Thyroid levels (checked with GP today; already tested)
Tiredness caused by waking in the night with kids and/or breastfeeding (no longer apply)

Tried:
Cutting out sugar
Cutting down heavily on carbs and eating more protein and veg
Increasing exercise
Drinking even more water
Eating more (this seemed to be going well for a few days, but then I had a really tired day on Sunday and slept all through church)
Folic acid (high dose supplement - random GP suggestion)
Modafinil
Keeping sleep and food diaries - not spotted any obvious patterns, could apply techniques of big data, recording loads of things (don't even know what things could be relevant)

Things maybe not been checked:
Absorption of oxygen - VO2 max?
Absorption of energy from food
Some kind of food allergy
Some kind of nutrient deficiency

Current status:
Saw the GP today. She's sent me for yet another round of blood tests, checking the same things they always test, but she thinks something might have changed (?) If those come back normal, she will refer me to the chronic fatigue clinic (which I didn't know existed before today). I had trouble ascertaining whether it's a chronic fatigue clinic (as in, for people with fatigue which is chronic, to try and figure out the cause) or a Chronic Fatigue clinic (for people who they believe have Chronic Fatigue Syndrome specifically, giving them coping strategies).

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33 comments or Leave a comment
Comments
gerald_duck From: gerald_duck Date: May 1st, 2015 12:01 am (UTC) (Link)
I assume the sleep clinic monitored enough to ascertain you don't have sleep apnoea? If not, that feels like an obvious thing to check.

Have you checked vitamin B levels? What about vitamin D and/or more sunlight and/or seasonal affective disorder?

Have you tried less sleep? I tend to need about 7½ hours of sleep now (down from 8½ pre-CPAP) and I know that two hours more makes me feel every bit as grotty as two hours less.

Is your bedroom dark enough? Are you getting bitten by bed bugs? Is the temperature of bedroom and bedding stable and comfortable? Do you sleep any better when Alex isn't there? (I note that Papworth won't have recorded any consequences of sharing a bed.)

From what I know of depression, I'm not sure it can be discounted simply because you're not unhappy, if you see what I mean. Though, increasingly, I'm coming to feel that health is a holistic combination of spiritual, mental and physical health, each affecting the others. If you are fatigued and depressed, trying to say that one has caused the other might be a chicken-and-egg problem.

As for the spiritual dimension, God has His place in this situation; how could He not? But I don't know how much to say about that in a medical-themed posting!
woodpijn From: woodpijn Date: May 1st, 2015 08:44 am (UTC) (Link)
Thanks for the helpful suggestions/comments.

I assume the sleep clinic monitored enough to ascertain you don't have sleep apnoea?

IIRC, both when they lent me a monitor to sleep with at home, and when I slept at the clinic, the machine failed to record data, so they couldn't be sure, but they went "well, you're the wrong age and weight and sex to have sleep apneoa." Also I thought you said that if I did, I'd snore loudly enough that you'd be able to hear it downstairs at GamesEvening.

Have you checked vitamin B levels? What about vitamin D and/or more sunlight and/or seasonal affective disorder?

The GP said there were some B vitamins included in the routine blood tests, which they've done before and are doing again next week. The tiredness doesn't seem to follow a predictable seasonal pattern, so I don't think it's SAD.

Have you tried less sleep?

Having had two babies in the last few years, I have a lot of experience with less sleep. I'd say it's worse, but not linearly worse.

The bedroom is fairly dark - thick navy-blue curtains, purple walls - and again, there's no seasonal pattern, i.e. I'm not less tired in winter when it's dark in the mornings. OTOH, there are a lot of electronic devices (two phones, two digital clocks), and we don't shut the door (if we do, cats scratch at it and wake us up).

I haven't noticed any sign of bed bugs. The temperature seems fine. Alex is a mixed factor - occasionally he snores and wakes me up, but if he's not there I noticeably sleep less well because of the unfamiliarity (and semi-consciously worrying if he's OK).
gerald_duck From: gerald_duck Date: May 2nd, 2015 02:55 pm (UTC) (Link)
Well, with typical sleep apnoea you'd snore loudly enough to be heard from downstairs if you were actually asleep rather than merely resting, winding down, tossing and turning or whatever.

Is there any indication why the pulse oximeter twice failed to get a reading? To me, that in itself is surprising having used one several times now without incident. Is there something strange about your fingers, or about how you move about in your sleep?
woodpijn From: woodpijn Date: May 1st, 2015 08:50 am (UTC) (Link)

Depression

If you don't have to be sad to have depression, it... doesn't seem like a very useful category? My cynical side thinks that the pharma companies are deliberately expanding the definition.

I already feel that our understanding of mental health is about where our understanding of physical health was pre-germ theory. They don't know what causes depression, and people often have to take several different ADs before they find one that works, and it's a bit random. And they take weeks to start working, and my tiredness varies so much anyway it'd be hard to tell if it was the drug or not.

I'm also cautious about the side-effect profile of SSRIs - they have some which last a lifetime even after you stop taking them, and some which would make me much less functional than I am at the moment (especially concerning when in sole charge of kids most of the day), so I'm reluctant to take them, especially when any diagnosis of depression is so speculative.

I posted some more about possible depression here: http://woodpijn.livejournal.com/44633.html
gerald_duck From: gerald_duck Date: May 2nd, 2015 03:23 pm (UTC) (Link)
Well, this is the NHS list of symptoms of depression, but this is the Wikipedia article on differential diagnosis. I seem prone to mild depression, and the onset is so gradual that I'm never exactly conscious of being sad. It's more that fun things don't seem quite as fun as they ought, problems seem more problematic than they should, everything is a little daunting, there's a sense of coping day to day rather than any more fulfilling trajectory to life, etc.

At the same time, I end up eating more, exercising less, sleeping more, aching more, being generally slower mentally and physically. Now that I'm a Christian, on a sample size of one episode I've also noticed my ability to engage with God is impaired.

To be clear, I'm not advocating drugs. I've refused SSRIs twice, now.

Out of interest, what do other people say about your mood? I notice that previous posting about depression is from before I first got to know you, so my own experience may not be terribly useful.

What are your milestones and ambitions at the moment? It occurs to me that Z starting school is still almost 3½ years away (?) which could at some level be feeling like a thousand days stretching out in front of you. On the other hand, though it seems we think very much alike in some respects, you appear far more keen on the idea of watching an infant grow up than I will ever be. (-8
pigwotflies From: pigwotflies Date: May 2nd, 2015 07:40 pm (UTC) (Link)

Re: Depression

I've taken SSRIs (fluoxetine initially and in the last 2 years, sertraline as it's safer for breastfeeding and we were TTC when I started it) on and off since 2008 with few side-effects. I had very vivid dreams on fluoxetine, however, they didn't diminish as much as I thought they would when I came off it, so might have been part of the CFS (which can mess with REM sleep). My eyes are a bit dry, which has only been a problem recently since I've been trying out contact lenses. Other than that, no downside, lots of upside. I suspect I'll keep taking something long term as it seems to keep me stable and happy.
Obviously that's just my experience. But I'm a big advocate for anti-depressants as they helped (and continue to help) me a lot.
What makes you think some would make you less functional?
woodpijn From: woodpijn Date: May 1st, 2015 08:51 am (UTC) (Link)

Spitirual dimension

Feel free to talk about it on here.

I do pray about the tiredness.
woodpijn From: woodpijn Date: May 1st, 2015 02:33 pm (UTC) (Link)

Re: Spitirual dimension

Sorry for rushed replies; was under pressure from kids. I agree physical, mental and spiritual are interlinked. I don't know if my physical-and/or-mental problem has a partly spiritual cause. I'm pretty sure it has spiritual effects; it's hard to be mindful of God, remember to pray, etc when I'm tired.
gerald_duck From: gerald_duck Date: May 3rd, 2015 09:51 pm (UTC) (Link)
I feel I understand — through life experience and through revelation — a little of how things are interlinked. On the one hand, much remains mysterious and I yearn to know more. On the other, I'm forced to admit that what I do know is enough — sufficient unto the day, sufficient to fill me with wonder at God's… texture and subtlety. It's not that God is changeable or diverse, more that billions of people can each lean into thousands of situations with Him and time after time He shows His perfect nature in a different light.

This is amazing grace; this is unfailing love.

I feel I understand. Putting words to that understanding is another matter.

Somewhere out in l-space is the posting I cannot write. It talks about health, and medical science, and faith healing, and the placebo effect, and miracles, and what wellness is for.

I have been in a room with two fellow Christians. Each had a relative involved in a serious road traffic accident in the past year. One thanking us for our prayers and saying the relative can now walk again after the second bout of surgery; the other is talking about how hard it is to come to terms with the death.

Once upon a time there was a couple where the husband was an atheist and the wife a Christian. One day, the husband was injured at a party. The wife and her church prayed for him, but it gradually became clear he was permanently paralysed. She divorced him. The husband's brother saw this situation unfolding and drifted from agnosticism to emphatic atheism.

And, of course, I spent many months too close for comfort to someone whose health problems were pretty baroque.

They say — those generic people who always comprise the them — they say that we see such situations and it's hard to believe they all form part of God's perfect plan.

Going back to C. S. Lewis, "There is no neutral ground in the universe. Every square inch, every split second is claimed by God, and counterclaimed by Satan." On good days, when my faith is strong, when I talk with God and am at least trying to love Him as much as he deserves, He speaks to me and loves me and helps me understand and calms my fears about what remains a mystery. On bad days, I don't feel like talking with God, I feel unloving, unlovely, unloved. I still know that everything I experienced on the good days is real and true, but I am distanced from it. Such is Satan's guile.

On the good days (I've waited for a good day before replying!) I have clarity concerning how great a gift is what wellness I possess, how great a gift is my very life. I cannot undo past mistakes and I have wounds that will never heal, but I praise Him because I am fearfully and wonderfully made, with life and health enough to satisfy the purpose for which He made me.

The good days are a win-win situation. I am equipped to cope with whatever happens, and what little we know of the placebo effect gives a glimpse into how powerful grace might be in improving health. And, of course, I win anyway, because I'm Saved.

The bad days are a lose-lose situation. But at least I'm still Saved.


My hunch is that if I work to improve my physical health, my mental health and my spiritual health, they will all improve. If I try to concentrate on one to the exclusion of the other two, they will not.
pigwotflies From: pigwotflies Date: May 2nd, 2015 07:32 pm (UTC) (Link)
When I had CFS, I didn't have joint pain or bowel problems. A lot of stuff you describe like brain fog, general lack of energy fits my experience.
I expect it's the Chronic Fatigue clinic in Peterborough. They were moderately helpful to me. Lots of stuff on pacing, managing energy levels. I also went to group therapy for a couple of hours and did some CBT. These days I don't think I have it anymore. I'm not sure if any one thing made the change. Time, slowing down to recover and then re-starting work part time which helped to give me a routine again. It was about 5 years between when I first got ill and when I felt I wasn't ill any more.
These days I'm as tired as you'd expect the mother of an 8 month old to be, but not more than that and I find I can cope on less sleep than I used to without crashing out too often. That was a surprise as I expected new parenthood to trigger off exhaustion and inability to do stuff again, but it didn't, reinforcing my feeling that it's gone.
woodpijn From: woodpijn Date: May 6th, 2015 11:37 am (UTC) (Link)
Thanks, that's informative and encouraging.
woodpijn From: woodpijn Date: May 5th, 2015 04:18 pm (UTC) (Link)
Something else I considered at one point and forgot to add - adding for completeness.

Something external to me, like atmospheric pressure or humidity. I thought of this because subjectively it feels like high pressure in/around my head when I'm tired, and when I'm not tired it feels like the opposite, like a cool fresh breeze is blowing through my head (yes, I know).

I mentioned this possibility to a GP once and he fairly sensibly pointed out that even if it is that, there's not a lot I can do about it.
gerald_duck From: gerald_duck Date: May 6th, 2015 11:13 pm (UTC) (Link)
I'm grouchy when a thunderstorm's brewing.
toothycat From: toothycat Date: May 18th, 2015 09:12 pm (UTC) (Link)
I'm a bit late to the conversation, but this just came into my head after Alex mentioned he's been really tired recently. Have you been checked for glandular fever and its many relatives? It causes bouts of extreme tiredness and it has been known to recur, although my encounter with a relative at university was a one-off. It's a viral infection, so could be catching. I'd be surprised if they hadn't checked for it, but it's not listed, so I thought I'd ask.

Anyway, I'll keep praying.
woodpijn From: woodpijn Date: May 21st, 2015 08:49 am (UTC) (Link)
Thanks.

I don't know. It's difficult to get the doctors to tell me anything, and even harder to get them to tell me anything true (e.g. when I recently asked the GP if I'd already been tested for thyroid, and she said yes, but the phlebotomist looked on my records and they said I hadn't).

I haven't heard anything back yet from the blood tests (and I don't know if they would include glandular fever or not). I might need to phone and chase. I assume not hearing anything means they didn't find anything interesting, but the GP did *say* she'd phone me either way to discuss next steps.
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