Fatigue & A New Baseline

Fatigue is one of the most common symptoms people have as part of Adrenal Insufficiency. The problem is, it’s also seen as a really trivial symptom by people who don’t have it, and often dismissed as ‘just being tired’. I’ll try to explain what it feels like using comparisons I know from before I was diagnosed, but there really isn’t any comparison.

My ‘normal’ state is to wake up with fatigue which doesn’t really ease off during the day. It gets marginally better around medication times, but it doesn’t improve by much. It’s a similar feeling to jet lag, being hungover, having the flu or having stayed awake all night. That wiped-out, your body has run out of fuel and is so tired it doesn’t really know what to do with itself feeling. Teachers might feel like it at the end of a long term, or runners after they’ve run a long race- that feeling where each step is a challenge, you feel like your limbs are moving through water or tar or you’re struggling to keep your head above water. Some days just sitting up is too much work, and it takes me a minimum of half an hour to get out of bed every day.

It doesn’t get better even if you sleep or if you have lots of caffeine. That’s the ‘normal’ every day feeling, which gets worse if you push it. I was stubborn and thought if I bullied myself enough and put my mind to it, I could overcome it. You can’t ‘just ignore’ the fatigue. Instead, I spent most of my time shaking, dripping with sweat, my eyes started to blackout from the sides inwards as if I was about to faint, I got really bad pain and muscle spasms which made it hard to walk, horrendous stomach ache and upset stomach, nausea, I found it hard to breathe, brain fog, I found it hard to speak, emotional and irritable, headaches, racing heart… Truth be told, I’ve ‘forgotten’ a lot of the symptoms because it made my memory so poor I don’t really remember. I got very creative in managing it so I (mostly) looked OK and seemed cheerful- I got married and taught classes feeling like that. Eventually I realised it was killing me. I have many of those symptoms most days as well, along with fatigue, but if I overdo it even a little bit, and that threshold is very low, those symptoms get worse. 

So ‘fatigue’ isn’t ‘enough’ of a word to explain it properly. However, the good news for me is that my endocrine nurse says I can change my baseline from 10/5/5mg to 15/5/5mg, and that 5 mg will make a difference. It’s like going from running your car on petrol fumes, to having something in the tank. Or going from permanently having 0 in your bank account to having 10 quid left to spend on something you want rather than just bills. It won’t fix or cure my condition, but it’ll mean I might start the beginning of the day in the plus rather than just paying off my overdraft back to 0. Because there are no Hydrocortisone doses at night, I’ve been mostly starting each day ‘topping up’ the deficit from overnight when taking my morning dose, rather than actually having any cortisol left to do anything with. An extra 5mg will hopefully help with this. I’m very excited by this!

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3 thoughts on “Fatigue & A New Baseline

  1. CosmicGypsy says:

    I am at 25 per day, I do mine slightly different. 10@8am/5@11am/ 5@4pm/5@10pm and if I wake at 3am needing a dose I do 2.5! That is 2.5 over the suggested, but if my body needs it the dr let’s me have it.
    I am sorry you had to increase but I’m happy you will find some relief!

    I hate how people think we are “just tired.” Or I wish that’s all it was was just “tired.”

    Liked by 1 person

    • Ok Then, What's Next? says:

      I’ve been saying for over a year I think my baseline was too low. They repeated my Synacthen (stim) test because im SAI and now I’m allowed to increase my baseline, so I’m pretty happy! I was saying to my husband this morning I was tempted to try that dosing schedule- the problem I had with 20mg baseline was the fact that I don’t have an option of anything smaller than a 10mg tablet (they don’t issue 5mg ones here) and even breaking it into 5s makes the tablet disintegrate most of the time, so 2.5mg aren’t really an option. Are you USA based? Most uk endos seem against circadian dosing for some reason.

      Liked by 1 person

      • CosmicGypsy says:

        I’m in the US, yes. And 10 is all I can find too! I cut them in half except I keep 2 – 1/4 cut pieces for when do need them! Yes they disintegrate, and ewwww when the get stuck in my mouth or throat- but they get me through to my morning dose.
        I’m SAI too.

        Liked by 1 person

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