Is anyone as fed up as I am about being told that they are deconditioned and that doing exercise will help with fatigue, when actually, it doesn't. I feel like I am screaming, exercise does not make me feel better it makes my fatigue worse. but no one is listening.

It feels like the doctors don't really know the whys of lupus fatigue, but they are quite happy to blame the sufferer for their suffering. its like they have their finger in their ears and refuse to listen to any counter arguments that proves otherwise.

Before I became Ill with lupus I was very fit. I swam once a week, went to the gym twice a week and walked practically everywhere, I was not deconditioned.Yet from the onset of my illness I have experienced constant extreme fatigue.

Over the years since I have had lupus, I have tried all sorts of manner to exercise and I always get the same result, complete exhaustion. after trying so many different methods and getting the same result, I have resorted to short walks on my better days.

If lupus fatigue is due to deconditioning, why did I have it from the beginning, when clearly I was not deconditioned and why does it get worse on bad days and during flares? Does anyone have the same dilemma, or can anyone please enlighten me.

9 Replies

  • short answer...sometimes I think Doctor's just talk rubbish!

    MD yes...but also still human....all humans are capable talking rubbish

    If you disagree with a doctor it's actually often a good thing to tell them so...they are NOT always right!! :) :)

  • What drs are telling you this? Seems to me they know vvvvv little about lupus.

    My v lupus experienced rheumy, & even my gp seem able to tell the diff btw an individual who simply has stamina probs due to lack of excercise, poor diet etc, and a person whose autoimmune condition's active inflammation causes chronic fatigue & low stamina

    I can say this with some confidence cause I spent 30+ years being told by all my health practisioners (establishment/NHS & alternative/complementary) that the deterioration of my stamina + my chronic fatigue were due to the strain of managing a chronic spine condition. So I focused and getting the spine condition adequately treated/pain minimised, which took 20 yrs....and, ultimately, off nsaids & prescrip pain killers I launched into 10 more years of conscientious regime of anti inflammation diet & supplements + bespoke excercise regime (Pilates/yoga/Alexander technique) + meditation/mindfulness + psychosynthesis therapy etc even then, because my lifelong sle was undiagnosed and untreated, the lack of stamina & chronic fatigue reminded at a fairly static level.....UNTIL finally my feet/hands symptoms were bad enough to get me fully I diagnosed with lifelong sle at 58.

    Only THEN (2 years ago)was I medicated properly in a way that took the edge of my chronic fatigue nd gave me back a few degrees more stamina ( 400 mg plaquenil daily)? But, perhaps because my SLE had been allowed to progress virtually untreated all my life, my impression was that I was stuck with the lack of stamina & the fatigue...until finally recently my rheumy & gp talked me into trying a prednisolone taper (10mg, dropping by 2.5mg weekly) which has shown me what it's like to be even less tired & have more stamina...ok, I still have to go gently mostly due to my feet probs, and can't be as active as my more healthy friends/family, but finally I feel as if I can confidently believel there are treatments I can try with the help of an intelligent compassionate lupus experienced rheumy & gp..l.which means I feel less low....and this in itself gives me a bit more umph/spark...or is it just hope? Even at nearly 60!

    Well, field, I'm v glad you asked your ? !...... a ? I've been asking myself...and only now am I feeling my way towards an answer that doesn't depress, take heart, and, as steadilymf says: question your doctors....and i'll add: don't hesitate to seek other doctorly opinions too. Of course, I don't know your whole story....but I hope this bit of mine helps you even a little

    Good luck! Take care!

  • PS sorry: those are my 2 deletions cause messed up using ipad to add this PS! anyway, just want to add: to give credit where due: I've been on this forum since it began and found grrrrrreat help & solidarity....lately it's the encouragement of wise, compassionate forum members that made me brave enough to try this pred taper...and this is after 2 years of my rheumy & gp urging me to try various formats of pred taper...I'd been put off by watching my husband tale pred 30 yrs for crohns, and witnessing him come off it over the course of 3 years...he is fine now, though!

  • When I was off work for a number of months with SLE flare up and fatigue my conslutant referred me to a 'rehabilitation' group for an 8wk course of intensive physio, hydro etc to overcome the 'deconditioning' from being ill for so long.

    I attended the course (4 x wkly for 3 hrs each time) although most weeks couldn't get past 2 days! I did all the physio, hydro, relaxation and exercise (even doing exercises at home) to no avail, I'm sure it proved that I wasn't 'just' deconditioned it was extreme fatigue, exhaustion and pain that meant I could not keep up with the levels of fitness they had hoped for. All that resulted was more tiredness, more pain and no increase in stamina, energy or fitness.

    Not sure why people don't understand the fatigue/exhaustion and often feel that i'm being judged as 'depressed' or simply not motivated!

  • I have been so exhausted for the last two weeks, I have only managed to leave the house once and even then I got a lift there and back. I think I am in a flare due to catching an infection, however I cannot tell where the infection stopped and the flare started, can't tell the difference between the two, if I am honest. Generally I feel tied constantly and everything I do adds to it, there is no let up. All I want to do is lie or sit down all the time. My fatigue is so debilitating.

    I saw my rheumy recently and have asked him for a referral to St Thomas', which he has agreed too. I am just waiting for the appointment now.

    Thanks guys for all your responses, its much appreciated.

  • fatigue is so so hard to explain to others; whether its family,friends or at work. ive felt extremely worn out since falling ill will lupus in 2005. I was fit and well before and could do 12hr shifts at work on my feet with ease and had bucketfulls of energy left after, whereas now I don't have enough spoons for one day :( x

  • Yes its the same with me, I worked full time and went swimming and to the gym as well. Since becoming ill, all of that has gone out of the window, just attending a hospital appointment can be hard going and I take a taxi there and back.

    thanks for replying.xxxx

  • Hi all,

    Hate to say but it's the same with me.

    Being an ex athlete, mixed hockey player and walker I think I know how my body works, sorry used to work.

    I was always told that Physio is all about strengthening. I don't think they understand the effort it takes to actually get through a day, let alone exercise.

    Had one lot of physio that ended up with me crying in pain...I do that enough without someone torturing me!

    Then was given a six session hydrotherapy course by another.

    That didn't help, just meant I spent the following 6 days paying for it!

    I was determined to show them that it wasn't through my not trying, that treatment would not help. So have subsequently been told by physios in two hospitals that their departments can't offer me any more treatment that would help my condition.

    Hope you all feel better soon

    Gentle hugs to all


  • Maybe one day, when they have exhausted all means, they may finally decide to listen to lupus sufferers and in doing so, gain more insight into the disease and actually find a cure. We live in hope.

    Thanks for your reply.xxxx

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