Ok so ive been really tired for a long time but its not just tyred im always exausted and i dont even have to do anything i sleep loadssss n when i wake up within half hr im shatred again its having massive impact on my life and ive read something about cronic fatiuge syndrome apparantly seventy percent ppl who have this also have hughes im just wondering if any one else suffers extreme tiredness and also terrible mood swings i guess im trying to figure out how much is due to my hughes n how much my bipolar any info would b great help xx

20 Replies

  • Hi Kezebabe, Fatigue is something that is difficult to fight. I get bouts of it, I am not always tired. It was the worst during my pregnancy to the point where I could lose consciousness standing. Try looking up vitamin B & D deficiency and MTFR blogs & questions. There have been many discussions lately. Maybe some of the symptoms will sound familiar. Have you been tested for any of the above? Sometimes just taking vitamins is not enough. Hope you get to the bottom of it soon & start to feel better.

  • Aww nice one i will do its mad how all these things come at once my family thought i was just making things up cos i am always ill but ive heard hughes is responsible for so much just ashame my mum seems fink its a condition ive just invented lol x

  • stay strong it sucks luv

  • Hi hon

    I know many of us suffer awful tiredness/fatigue. Bone tired and legs feel like lead. Type in symptoms Olympics in search box its amazing how many of us suffer so many symptoms in common.

    A lot of us have multiple diagnosis, mine is Aps with lupus symptoms overlap and fibro plus vit d deficiency which all cause fatigue/tiredness. I take plaquenil and vit d amongst a load of other meds. They help a little but if I do too much one day I know I will pay for next few days.

    Go with your body and rest when you can and pace yourself.

    Awful brain fog today, so if waffling i'm sorry.

    Take care gentle hugs love sheena xxxxx :-) :-) :-)

  • Ps have a look at Hughes foundation website at hughes-syndrome.org and print stuff of to show mum etc. I did and my mum has spent hours researching so she understands and helps. Hope she will listen and be supportive hon it makes such a difference.

    Love n gentle hugs sheena xxxxx

  • Hi there

    I have Post viral syndrome with Hughes Syndrome /Lupus/ Sjogren's the fatigue I have is terrible I sleep all night and part of the day I have learned to treat my body like a battery I pace do a bit sit do a bit lay down I have tried everything in the past 28 years all lotions and potions Chinese Medicine Reiki Hypnotherepy healing I could go on nothing has worked yet I live in hope though the fatigue I get is like when a baby get's very over tired so bad that you can't cope n you just crash any life is sweet x

  • 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!

    I take plaquinil for the joint pains etc, they did seem to work at first....but I'm not so convinced its working at mo'.

    Yes I would say its down to Hughes or maybe even the sister disorders that we hear about on here & other sites.

    Keep well & happy hun xx

  • Cheers all n i will print that off for my awkward mother lol just hope this tummy pain fades now altho sat in hospital now waiting for surical team look at me i really get feeling my last drs been to lazy as ive had this yrs n dr just daid oh its sticky blood was last dr who went into detail so maybe i should seek mre help xx hope u all ok thx again xx

  • N noo u want wafflin lol was very gd advice hun x

  • Hi hon

    I hope the docs where you are right now help!!!

    Do keep pushing too, important with this condition is we have to be our own advocates!!!

    The wheel that squeals loudest gets oiled!!!! We just have to squeal louder than anyone else!!!

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

  • You knw summet ure right i never thought of it like that thx hun ure all so lovely n helpfull im not used to ppl being nice like this lol thank u xxx

  • We all faught the system so long, if we don't care and help each other no one will. So many of us felt alone is great to have this place to come where we know we're not alone!!!

    Love n hugs sheena xxxx :-) :-) :-)

  • I also think Plaquenil isnt working for me most of the time but my specialist said I would feel like I was right back at the start if I came off of it. The fatigue is the worst part of APS for me, just wish we had the magic cure!!!!!

    Keep going, it will pass and life will seem ok again.



  • Sadly not all medical doctors even some specialist in rheumatology agree with patients fatigue is part of hughes. What I found useful and perhaps admin will be able for you to be directed to where I found this info on the site but it was a comparison page with symptoms comparing hughes & lupus.. I take it with me now as it states something like 76% of APS pts get fatigue against 82% lupus!

    My problem was being told by a specialist I couldn't have fatigue due to hughes because I did not have lupus! Research tends to concentrate on the clotting effect of hughes that fatigue rarely gets mentioned but sludgy blood going through our brains with less oxygen than non sludgy blood is bound to cause alertness & fatigue issues.

    But as mentioned some people have more than one condition to deal with to add to whats already been mentioned is thyroid function & adrenal gland. Cortiscone low levels can make waking up a nightmare :-) :-) when I was on steroids was the only time I could wake up early feeling alert!:-)

    It must be hard if your mum is not very supportive - but unless you suffer from fatigue sometimes it is hard for others to understand because tiredness is a totally different ball game! Give her the chance to perhaps read the comparison table & see other peoples accounts on fatigue might help her understand - good luck hope the docs get to the bottom of your tummy pains as well Kathy xx

  • " bone deep tired" is how I try to describe the autoimmune funk fatigue. Bone deep tired. As in, ( I really had this conversation with myself): "I'm thirsty, but I'll have to lift that 8 oz glass all the way to my mouth to get a drink. I don't think I can.". .

  • I like that gina so true....

    Love n hugs sheena xxxx :-) :-) :-)

  • U knw ure so right and funny u shud mention the waking thing my fella can not wake me at akl its like im in a coma i can not wake early n even tho i sleep all night most of time i then sleep half day too n im still shayred n i was also thnkin that gina i wanted fag n brew n i couldnt bare get out of bed even when i needed loo i had talk my self into gettin up to go it took ages till i eventually went xx n yeah hospital sorta lookin into it got a stupid dr who tried tel me ovarian xyst rupturing isnt dangerous but hospital say is n i knw it is so just waitin for scan now lil rop it off im even more tyred due to tramadol co codamol and morphine thats without all my normal meds oh well thx every one for all ure jind wrds many hugs kez xx

  • I have hughes and take asprin, also diabetes treated with tabs, but i also have had chronic fatigue for about 4yrs. I sleep alot and like you say i am shattered some days after being up a short while. I find if i have to go out for a day i then need to stay in for a couple of days to re-charge. I hope u feel better soon or at least get a diagnosis. Take care x

  • hi lcol, the exact same thing for me. when I get up in the morning I usually feel ok and then about 45 min later I'm wiped and can barely breathe or stand up. I try to never plan anything for the mornings. I have more energy in the evenings although if I have even just a few sips of wine a few minutes later, wiped again, so I'm usually careful to enjoy some wine after dinner when I don't need to stand up or do chores. One nice effect of the wine though is after a glass my usually bluish purple feet turn a shocking shade of red! I'm assuming you have been diagnosed already. Have they tried anything for the fatigue at all?

  • Hi yes have been diagnosed a few years now, not on any treatment for the fatigue just have to pace myself, they offered me tablets coz i get tingling and numb fingers but i refused at this stage because i already take a cocktail of tabs. Glad the wine helps you, i cant drink any more as i have diabetes so not reccomended, but it just sends me straight to sleep anyway. Take care Lins x

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