How do you deal with fatigue? - Hughes Syndrome A...

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How do you deal with fatigue?

10 Replies

Just wondering how everyone else deals with their fatigue. I'm 32 years old and struggle to get out of bed every day. SSRIs have helped some, but I still have a ton of fatigue every day. Any tips?

10 Replies
Gadgets profile image
Gadgets

Hi

Its horrible isnt it! I started my own business and work full time since my stroke and APS.

The Fatigue is the hardest thing for me but I have found as crazy as this sounds that the busier I am the better I cope with it as I have things to do that need doing and customers need looking after etc. I am sure it takes my mind off the APS fatigue as I have things I need to attend to.

Before I would just sit and watch daytime TV, I became very lazy, no thats not the word I am looking for, less enthusiastic to do anything as I was so tired just couldnt be bothered.

I find that keeping busy works best for me, I keep my INR in mid target as much as I can (INR 4.5) and just get on with things. That is ok often for several weeks and then in comes that horrid feeling of dread and cold, then it is time to rest up for a day or 2 and then get back into a busy life again.

Pace yourself!

Dont get me wrong I am not saying everyone with APS can manage this but for me it works ok far better than lazing around the house.

Thats how I cope with fatigue (but of course I do still get fatigue I have not found an answer to that yet and I have also posted asking but no one came up with anything)

Regards

Gadgets

Storky profile image
Storky

Hello

Really sorry you are finding this difficult, it is hard and its like a vicious circle. The more fatigued you are the less you do and the more tired you feel!!

Pacing is really important and learning to say NO to friends and family.

You need to start slowly and set yourself a little target of doing something. Then try and achieve that every day. Even if it is that you will get up at a certain time. It may mean that you move from the bed to the sofa for the first week but at least you have done that and be proud that you have and been consistent about it. Then you set yourself a task in the house thats not too demanding, make the bed, put some washing on - anything that you feel is do able because if it is not you will fail, give up and go back to square one.

What you are doing is gradually building up and then allowing yourself to have a little rest in the afternoon in exchange for your new routine.

The other thing is to see if there is hydrotherapy near you and if so join and go to a class if possible. Do 10 minutes to start with and build up. Being in the warm water helps and it gets you moving with the help of the water. Word of warning - be prepared for the drag effect when you get out, its quite alarming to some but if you just get out slowly giving your body time to adjust, its not so bad.

Bottom line Pace Pace Pace all the time and hopefully the fatigue will become a little more manageable .

MaryF profile image
MaryFAdministrator

Hello... I have fatigue for everything I have... and now find out that I have hypothryoid and stressed adrenals as well, (low cortisol). My fatigue is off the scale and my sleep is poor.

Firstly I maintain and excellent diet, on top of this I maintain exercise, but it is broken down into segments of 10 minutes, so I do not do it all at once.

I save up particularly boring jobs for when my fatigue and concentration is poor, and pace my way through these... and save more energetic and interesting jobs for when I am up to more.

I also cook quite elaborate meals when coming out of a really nasty psoriatic arthropathy attack... as I know what I am doing and the creativity gets me going.

I have had a hydro bath fitted which i retire to with decent music when I can't do anything... when my brain fog is particularly bad i try and learn Bulgarian... which i am finding difficult... to try and push my way through it.

My husband is very funny and makes me hysterical with laughter on a regular basis and and do watch and engage with funny things.

And yes the fatigue is awful.... and most do not understand it, other than on here!

CindyCB profile image
CindyCB

Gadgets,

Have you had your thyroid tested recently too? Just a thought.

Mine does come and go, I'm just going through at bad spell lately. The house is a mess and all I have the energy for is sleeping and work. I changed jobs from an active healthcare worker to a sit down desk job working 8 hrs instead of 12 hrs and I have much less mental fatigue. Lately my physical fatigue is terrible. My boyfriend does the best he can but isn't always the most understanding. I've only been diagnosed for 3 years and I think he's still adjusting and thinks I can just use "mind over matter" and think myself out of being tired. We both work full time, he actually works enough hours to be working 2 full time jobs, so asking for help with the housework is sorta out of the question. It's just tough sometimes.

Hi

I have to agree with gadgets, to avoid fatigue catching me I keep busy - really busy. I work full time in central London but live 1h40m from there. I walk the dogs before and after work most days, I also have a horse and am trying to improve my house all the time - I play stoolball for the village team and do charity work too. I have a godson and spend a lot of time trying to catch up with friends. I make presents and Christmas cards.... on top iof that i plan on setting up my own busniess one day. some times i wish i didn't do so much but actually I sleep better than almost everyone else I know!!

Good luck

Tx

julie99 profile image
julie99

I ageee about pacing yourself. That was the main thing I Iearnt when I went to a Pain Management seminar. Like most women I have an overactive sense of guilt so it always felt wrong before then not to complete every task. Now I realise if I do part of the task, break off when I can't do more (whether that's 10 mins or an hour) it's easier to finish the task than "soldier" on.

You say the house is a mess. I know that feeling! And the more fatigued you feel, the worse it looks and the less you can cope with it! You and your boyfriend are working hard, so finances may not run to this, but I found having a cleaner to do a full clean of the house weekly and change the beds made a big difference. She comes for 4 hours weekly at £10 an hour, but because she is just concentrating on the cleaning (AND she has energy she can get through so much. I still, after 10 years, hate to be resting whilst she's rushing around, but she knows I will do things when I can. Also, I ply her with her favourite coffee!

I also make lists. I have a chronic back problem and have found over the years that I need to lie down flat for an hour regularly at intervals throughout he day. Whilst lying down I make lists of what I will do (or hope to do) on my next "up". I divide things between Must, Should & Could. That way if I only get to stay up a short time only the Musts will get done. And, yes, on many bad days very few Musts get done !

I am "lucky" in a way with the aspect of my husband understanding the dreadful draining fatigue, in that he has also had a lot of ill health at various times in his life. It sounds cruel but his having had fatigue makes him understand mine! Looking back to before I became ill and knew what fatigue was, and he was ill himself, I bless the number of times I bit my tongue and didn't say anything when he seemed to be just lying about the house and not trying to help. Little did I know what he was going through.

Hope you feel a bit better soon. Best wishes and hugs to everyone JP

kathyD64 profile image
kathyD64

Hi ;-) fatigue is one of the biggest challenges i have faced as it so effects your mood and for me i get so irritable when tired. I hated the thought of napping during the day and use to beat myself up but one doctor i saw said if your body says rest do so! i was pushing myself and im not a lazy person by nature so hated feeling so fatigue... exercise is a defo its true sometimes i just dont want to walk the dog but i go out with a friend we chat as we walk and i must admit i like the tired feeling you get as compared to the fatigue! i have now got more use to my body when i feel tight chested or my heart is going fast i dont push it that was what i was doing and it got me know where! just ever so frustrated and moody!!!

listen to your body pace yourself that famous word ;-0 keep your mind busy if you feel to exhausted to do physical work.... but the biggest difference i have noticed is my INR.. my gp just saw the fatigue as part of my newly diagnosed fibro but i kept saying its the APS! my ACL antibodies are high and that helped me understand my body and how i have responded to an inr above 3!...

if i got a busy day i then make sure the next day is free to rest,, i found if i arrange to see friends etc that put me under added stress cos i then worried i might be too tired so it caused me more stress and fatigue.. i have learnt to be more laid back, dont make big plans when you got some energy...

my job as a nurse has an unpredictable work load i always give work all, then find it can take 24-48 to recovery so i now watch my shifts to ensure i get rest days.. diet is imp but im the worst culprit i eat so much choc but i know when i eat sensibly i do feel better... hope you feel better soon hun my fatigue hit me more in my 40's so i feel for you as you are young but if you can reduce your hours do so i did life's to short work is good but like everything in moderation including that well deserved glass of wine on an evening xxx kathy xxx

ciaronsmum profile image
ciaronsmum

Hi

All i can do is echo what the others have said, a good diet, gentle exercise and pacing yourself. The best investment i have made is a wii fit as it is gentle and fun with lots of variety and i can exercise in the comfort of my own home, particularly in the winter.

Take care, it will get easier

Louise x

Thanks folks. I am feeling a bit better the last week or so. Guess I'm over the hump on this round of fatigue. My new job working in an office environment versus in the hospital has helped a lot. Happy Thanksgiving!

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