How badly does fatigue affect your life?

KylieGirl
KylieGirl Community member Posts: 17 Contributor
in Mental health and wellbeing

hi there,

I have spastic diplegia. I used to be able to walk up until the age of 33 when I decided that I was just in too much pain. And made the decision to become a wheelchair full-time.

I am on a cocktail of meds, including gabapentin at the highest dose as well as a baclofen pump.

I live a fairly active life and I’m very determined. However, my fatigue has got so bad over the last couple of years, that it is stopping me from doing activities that I really love.

For example, I can wake up in the morning and have a feeling in my head that tells me it’s going to be a bad day. I’ve tried my best to rest as much as possible particularly leading up to important events. That doesn’t seem to matter, I can stay in bed for an entire day and just binge watch a series, have an active day the following day and then have a ‘crash’ day the day after.

I’m just wondering if this is something that is familiar to anyone else. When these days happen, I can do nothing but sleep. It doesn’t matter how much someone is talking to me, I can fall asleep right in front of them. I can sleep for hours at a time and still get a good nights sleep that night. Before I found out tonight that fatigue is a big part of CP, I was considering looking for a diagnosis of chronic fatigue syndrome, because it is so bad.

I’ve been on the so many years, I don’t think it’s that.

thank you all so much for reading.

Zoë

Comments

  • Nightcity
    Nightcity Community member Posts: 1,146 Trailblazing
    edited October 8

    Hey Zoe

    I have "waves" of up to a week at a time where I'll fall asleep constantly every time I sit down, lay down or am not moving, this will go on a loop all day waking up then falling back to sleep within minutes.

    then I'll go into a period where I can stay awake normally for up to 10 hours.

    blood tests never show anything untoward that I'm not already aware of.

    it's been going on since I was 14 (1996) and it's very rare I don't need an hour in the afternoon.

    I can't walk anymore because My back tightens and my legs wobble and give out if I go too far, I suspect it's spinal stenosis the GP says after my next vitamin blood tests he'll check for SS as for now it may simply be the levels again of vit D.

    anyway It's mentally and emotionally draining to be physically tired so ridiculously often.

    Best Wishes

    Rick

  • KylieGirl
    KylieGirl Community member Posts: 17 Contributor
    https://forum.scope.org.uk/discussion/comment/919884#Comment_919884

    thank you so much. I am so incredibly grateful to you. I’m sorry that this is also affecting your life, and it appears to be much more often than it happens to me, so sending you best wishes and admiration for coping with it with such grace.

    Best wishes

    Zoë

  • smokey18
    smokey18 Scope Member Posts: 29 Connected

    Kylie Girl

    I just wanted to express that I can relate to how you experience your pain and fatigue. I had a stroke 6 years ago and as a result I still today continue to experience fatigue along with chronic pain.

  • luvpink
    luvpink Community member Posts: 374 Empowering

    Yes my fatigue has worsened so much since January time.

    Blood tests showed vit d and vit b12 deficiencies and supplements have proved to be infective.

    I am permanently exhausted and I can barely raise from my sofa let alone function.

    I literally have to fight to stay awake during the day because my sleep at night

    Is already poor and it would make it worse if I do sleep during the day.

    Its a miserable exsistence and I miss out so much socially because I don't have enough energy.

    I am due to have more blood tests this Friday. X

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