Sticky Blood-Hughes Syndrome Support

How does your fatigue feel?

Sounds daft, I know, but how does your tirdeness fel? For me it's lik e lking though mud and as if I want to just put my very heavy head down and never lift it up again. Read l;ast night ina book called 'stonger after stroke' that it takes 100% more energy for a stroke survivor to do any physical thing than someone of same age and avergae fitness who's not had a stroke. Can't work out difference betewen what's srtoke fatigue and what's APS. However, hav been doing lots o left hand exercises ad my typing is sloy improvign despite the typos here.....!

11 Replies

Hi Eliza, sometimes I have described it as my blood aching, and that was before I was diagnosed with Hughes. Unfortunately for me, the doctor told me he had never heard anyone say anything like it before and didn't know what I meant, but it makes me feel slow and heavy, like carrying weights, but in your blood! What an odd condition this is!!!! Larraine x


Well put Angelpaws i understand what you mean great description :) xx


Interesting wording but it is a good description. Everything takes more effort & motivation and even that is not enough sometimes. There are days when getting out of bed & picking your head up are difficult tasks. I push myself harder & try to live a normal life. If no one can tell how i feel I am doing a good job pretending lol. I feel like I have slipped a long way down the slope in the last year (more in the last 2 months).

At the worst times I get tired, but when its time for bed I feel restless. When my fatigue is really bad its like my brain starts shutting down. Like I could fall asleep walking or talking & there's gaps in my consciousness like a blank. I usually look around see if anyone noticed & carry on like nothing happened.

I used to joke around that "I'm so tired I could fall asleep standing on my head eating popcorn" To be honest I have no idea what that means, but basically there's no activity that would keep me from dozing off. Maybe I am nuts :)~ So far I still have a lot of good days but I do know what you mean.


Hi Eliza,

Yes it is nasty the fatigue, when I was in town yesterday I had a bad case of it, I just managed to go around get the weeks shopping, went outside to wait for hubby & literly had to slump over the trolly to keep me up, I had to crouch down a few times & sit on my feet as I couldn't physically stand up!

A lot of us get this & maybe we all treat it differently, I decided to give in to it for a couple of hours & had a nap, then I managed to continue to clean & feed pets after then I had an early night.

Keep well & happy Sue xx


I describe my fatigue like not being able to wake up , I'm awake but feel like I've just woken up.


Hi Eliza

The fatigue is awful. Some days I find myself dragging myself around from morning till night.

I know lots of us have multiple diagnosis, for example lupus, thyroid problems, sjorgens, fibro, vit d deficiency, etc that also cause fatigue.

I find the plaquenil and vit d plus bucketload of other meds help a little, but We still have to accept our limits and rest when our bodies say so.

It`s just so frustrating!!!

Glad we can share on here.

Hoping for better days for us all.

Take care gentle hugs love Sheena xxxxxxxxxxx :-) :-) :-)


Hi Eliza

I feel a sense of dread and a coldness creeps up my body and my speech goes wrong, exhausted and then just have to rest. Sometimes I can go now several weeks and I think I am over aps at last but then in comes that horrid feeling and I have to rest up.

I will add that I have a thinking that beacuse I work full time in my own business that I started since my stroke and aps that my adrenalin is working hard as I am motivated to get up and go to work, jobs to do, meeting to have etc that the adrenalin takes the edge off the pain and fatigue (to a certain point) however if I go away for a weekend break or have a holiday my adrenalin reduces as I relax and then I feel totally and utterley fatigued.

For me I am sure adrenalin plays a part in reducing fatigue and pain along with plaquenil, gabapentin and warfarin.




What is gabapentin?



I feel most days so tired and listless that, If I came across someone who was throwing £50 notes around for free. I could not be bothered to pick them up, just too much effort!




I have spent too much of my life snared in this chronic tiredness. (though even 1 day is too much time in that snare.) And I fall into it so gradually, and the fatigue is so "normal" to me that at times I am in denial about my fatigue. My rule: if I absolutely can not sit through a TV show, or a movie, or read a book without falling asleep within 5 minutes, then its fatigue. If I take 2 naps a day as well as sleep 10-12 hours a night, its fatigue. But just a few months ago while filling out doctor forms I checked "No" on the tiredness question because even though I got a positive all the above indicators I was again, in denial. The chronic tiredness is so normal to me by now that it, sadly, seems "normal, " and I must force myself to rely on above parameters. But then I fall into denial again -- "Tired? Me? No, no more then usual." (The punch line being that "usual" for me is "tired" for most people.)


Im having a lot of fatigue problems at the moment ive never felt so exausted i cansleep all night n stay in bed till dinner or really late dinner say 2 pm n then force myself to get up and im not awske longer than half hr n i feel like ovr not slept for bout a week my eyes burn my body goes really weak i cant b bothered taljin or movin everytgibg seems soo hard i just feel like im gpnna collaps i go dizy n grumpy sometimes tearfull till eventually i go sleep mad how this affects u its a horrible thing to deal wirh on a day to day basis hope this helps u and look forward to hearing from every one xxxx


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