I’ve been discussing with friends what fatigue is - here’s my description.
Im interested to hear how others describe the fatigue they experience.
Fatigue is horrendous- I’ve struggled like that for 28 years getting progressively worse as my condition deteriorates.
The way I describe it is:
Imagine that you go in for an operation. They give you the full dose of general anaesthetic-then the surgeon decides not to do the op.
They wake you up in your bed. Nothing has been done so there’s no post op pain. The nurse tells you to get up and dress and go home. (And quickly they need the bed.)
You can’t keep awake, every cell of your body just wants to sleep. They get you up but your legs collapse under you, because they are so fatigued.
You think if you could just sleep a while you will be ok. So you have a nap but it doesn’t help.
People talk to you but it’s like your brain is floating around somewhere else and the words make no sense! You reply but your words make no sense either when they leave your lips.
The normal light is suddenly blinding, noise is defining, smells are overpowering often making you feel sick (perfumes, animals, cooking - even things others can’t smell) also you can still taste things you ate hours ago, which again makes you feel sick. The worst in my opinion is that your skin hurts to touch and you are freezing cold. , even in summer.
I also experience an ‘electric shock’ feeling in my limbs, and sometimes pins and needles too (Warmth eases that discomfort so I use an electric heated throw).
There’s things that you need to do but the overpowering urge to lie down and sleep is all consuming. In the end you have no choice except to go away from stimulus, hide under a warm cover and lie down.
You feel lazy and frustrated because there’s lots you want to do but you just cannot fight it.
Fatigue isn’t made better by a nap though! So somehow you learn to function like that and lie down periodically.
Thanks for reading, I’m looking forward to reading your definitions ❤️ x
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WendyWoo50
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Fatigue is a bodily state where every cell is exhausted by a “dis-ease”. There isn’t a medical or non-medical explanation or definition.
Fatigue is NOT understood by medicine or doctors.
I have a wonderful rheumatologist and haematologist who “get it”! I am one of the lucky ones.
Many don’t “get it”, not just doctors but friends & family. This can cause many problems in our relationships and marriages when people don’t understand and calls us “lazy” or “selfish”.
Often this is an unconscious reaction because “if it can happen to you, it can happen to me”! It’s a form of denial that is very cruel.
It’s very important to have a safe space to talk about your feelings. Here or a therapist. It’s not a sign of “not coping” but a healthy response to something that is cruel and stolen part of your life: our health.
I get to the point I can't lift my arms to wash my hair, it's not just tiredness - it's extreme. I do tend to use the spoons theory, this was introduced to me a few years ago, good to follow and really useful to explain fatigue to others.
I used to use my version of that to explain it to my son when he was young. I get the hair washing mum came and washed mine on Weds (26th) it was the first time this year and needed three washed. X
My problem is I’m not sleeping, I just lay staring at ceiling, keeping my spine aligned and heat on my body. I understand what you saying but even naps are impossible for me. Was prescribed sleeping pills, no help, doc said try double dose, I think I’ve made it to 4 hours of sleep. Learning to understand as I look around at my home…I just can’t…I want to “DO”… maybe one day I will…😞
Aw. I understand I’m usually woken by pain, usually after 4 hours. Or a hot sweat! Then that’s it. Sometimes I’m extremely lucky and get 6 hours!Have u tried s proper relaxation meditation? I’m a meditation tutor and talk them through physically relaxing their body, then mind, then relax a while… if ur interested let me know. Xxx
Have you read about the " spoons" metaphor? Its like: you only have a certain number -say 10- spoons to give away each day. So-- cooking breakfast, getting dressed, and a trip to the grocery has cost you 7 spoons. Then your friend asks you to go to the movies with her this afternoon. Well... you know that trip will cost a good 10 spoons, but you have already used up 7. Had you known earlier you would have traded a cooked breakfast to opening a yogurt carton and no grocery trip. And though you try, you just can't explain why you must refrain from that theater trip. Your friend is offended, and by the time you hang up the phone, that difficult conversation has cost you more than your 3remaining spoons. All you can do is crawl up to bed. And now friends and family members are even more convinced that you are just lazy.
Thank u. I totally get that. I used a similar story to explain to the kids when young. I used sweets instead of spoons. They understood and even refer to it sometimes now. I hadn’t read the spoons theory then.
It’s so true about others not understanding. I lost many friends at first. Have a few amazing ones now! Xx
Yes, very tricky the level of fatigue with our condition and a lot of other autoimmune conditions. I still have severe fatigue at times, but not continuously, having ordered private and detailed blood tests, I was able to prove I had a slow thyroid and B12 deficiency, both of these cause dire fatigue and often get dismissed as Fibro!! So, better than I was in terms of the fatigue, it is more manageable. MaryF
I’m pleased u r more balanced now. I had the same detailed tests (u gave me the details) and I was spot on perfect except vit D. Which I take D3 daily at max dose anyway x
Good, glad you did that, also I have to pace myself, if I don't exercise, (even if I do have to divide it up into 10 minute chunks, or shorter walks), I am more tired, today is a very tired day! Hope you feel better soon. MaryF
Thank you. It’s a constant juggling act isn’t it! I was dreadful yesterday. Only managed 3 hours sleep last night. But feeling awake this afternoon! No rhyme or reason to it is there ? Take. care x
That’s it. I’m done. Like a light has been switched off. Immediately I go from having “my personal” normal energy level to “none at all.”
Time for bed- end of story.
Oddly- I have to be horizontal. “Just sitting down” doesn’t cut it. I literally have to go to bed.
How did we figure this out? Some time ago actually- even before diagnosis.
Family movie night- over holidays for example. Children in- I still had youngish children- plus ccoudins of my youngest child, ( ages 8, 10…)
I literally had to get blow up mattresses and put a foam topper on- and propped sheets, blankets, down pillows… and put same out for kids so they could snuggle and be actually comfortable. ( fall asleep so I could too.)
Nice fire in fire place- movie- living room would become an actual second bedroom. I still have to do this during holidays sometimes!
As for the other sounds, smells, speech. I do/ did this - before diagnosis.
It was temporal lobe epilepsy. Aphasia/ agnosia, olifactoray hallucinations / auditory hallucinations ( only music) … EEG showed seizures in the amygdala/ hippocampus area. 2012
Anticonvulsant didn’t help much until APS was discovered, and now warfarin and anticonvulsants keep those seizures at bay.
Wow we all go through it don’t we.I understand what u r saying. Luckily I have a reclining chair that goes as flat as a bed. Or I’d have to do the same.
I read in one of the suggested APS books that it can cause seizures too.
I was glad to read this post about fatigue. It actually made me feel better. I had forgotten about fatigue being a factor in Hughes syndrome, and I was feeling very disheartened. I had been through more than three months of being ill, as a reaction to new meds for my diabetes. While recovering I felt pretty darned hopeless of ever being able to do things that matter to me again. Like seeing my grandson. Or ever vacationing in the Caribbean on my own again. At the ripe old age of 65 I was giving up. I mentally compared myself to how active my Mom was at the same age, and found myself lacking.Only two things helped keep me going; my Mom didn’t have Hughes, and I had been told that even though my birth age makes me 65, the assaults my body endured make my physical age up to twenty years older.
With the fatigue in mind I just have to remember to pace myself to achieve my goals!
I’ll meet you in Aruba in 2023. I may have to bring a helper with me, because of the muscle mass loss. I can get in the water to snorkel but I can’t get back onto land without help. 🤪
Is it common for aps to cause so much fatigue? Haven't been diagnosed yet but I'm just good for nothing at the moment. I'm tired just being upright for more than 5 minutes
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