Good morning lost original post try again, how do most people cope with fatigue. I am still on 5ml Predisolone daily 4years in due for injection tomorrow which will help short term but I wish there was a mor suitable drug available as I have said before the best drugs do not suit me e.g. Meth and Embril thank you for reading.
Fatigue: Good morning lost original post try again... - NRAS
Fatigue
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tyncwmmarchhywel
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I experience regular episodes of fatigue, I don't fight it or even try to anymore, as fatigue always wins. In my experience trying to push through results in a longer more debilitating episode. I just give into it, do little, eat prepared food from the freezer and take things easy.My fitbit is set to remind me to get up and move every hour, which I do. A wee walk round the house or garden, otherwise I do little.
I'm on oral prednisolone and can't manage without it.
Thank you for advise, are you unable like me to take the Bios enc.,and do you feel a terrible amount of heat and warmth with the predislone. thanks again.
I didn't do so well on biologics, I'm on toficinitib and lefunomide just now along with prednisolone. I'm hot, I'm hot all the time even before I started prednisolone , with hot, slightly red hands and feet my hot feet wake me during the night.
I'm presently changing rheumatologist at the moment, hoping for improved care.
Hi Mmrr has anyone given any indication why you’re so hot. I too get very hot ,neck and back wet, this can happen even when not doing anything most uncomfortable and annoying. X
No, I'm weary reporting the heat that comes off my body. It has been ignored since I reported the issue at my first rheumatology appointment over 5 years ago.One rheumatologist I saw on a temporary basis said she had never heard of such a thing 🤪.
My partner can feel the heat coming from my body when sitting beside me.
When my RA is better controlled I'm cooler.
It’s like going through the menopause again 🙄 perhaps we may get an answer one day.
Are you seronegative by any chance?
No I’m seropositive
The reason for asking is I've often noticed that seronegative people seem to have some 'strange' symptoms that seropositive folks don't. Thankyou for answering.
That’s really interesting. When I saw my first rheumy (a one off private appointment) he checked which joints were affected by feeling for heat. I always do this now if I have a niggle. heat = inflammation.
Interesting. I’ve just been diagnosed as potentially seronegative, after two+ years battling severe symptoms. The only real rhyme/reason to my particular array of symptoms seems to be that it’s mainly concentrated in body parts I’ve broken or strained in earlier life (professional horse-rider). Biologic currently seems to be working in my case and I’m down to 2mgs prednisone daily (at last!). But fatigue and hot flashes for sure still a plague and I guess will be with me long-term. But I can walk, so trying to appreciate the upsides
Are you taking RA medication along with the steroids ?
Yes I can understand that.
Oh I have heat rages almost every day at the moment as in the middle of a flare and fatigue gone nuts! But still get the heat when not in a flare just slightly less of it.
Me too!
It seems to be a common theme with auto immune disease
And me. Yesterday I was so hot that my hair was totally drenched and dripping down my back. It’s purgatory
What made you want to change your rhumatologist
My present NHS rheumatologist has lost interest in my increasing symptoms, would not offer a medicine review, was rude, unkind and dismissive. My last appointment with her was spent with her talking about sleep and me starting yoga.Previously she offered me antidepressants, opioids and sleeping tablets when I was only on half dose medication, she blamed me for not reminding her that I was on half dose.
I've seen the new rheumatologist once privately, now changing to seeing him as my NHS consultant. He has ordered MRIs, suggested a DEXA scan and will offer a medicine review.
That sounds very incourging
I hope so.
I am always fatigued and i just have to sit down when it gets too bad. I sit with my colouring book and pens. Mmrr has some sound advice as well. I am 5mg of steroidsm for mall the good they do me. xxx
Thank you Sylvi,what a hard going illness, some thing new all the time. take care hope things improve with your hand.
My energy levels are a lot lower generally, but I also get periods of fatigue usually lasting at least a few days (or weeks) at a time. Being honest with myself about my limitations is the starting point. Then honest with other people around me as necessary. As Mmmr says, I’ve found there is no point trying to push through it or force the issue. If I’m struggling, I look at my diary and to do list each morning, work out which things are genuine necessities, then plan my day around that, knowing that a power nap in the afternoon also usually helps. I don’t tend to firmly plan anything in advance, and those close to me know and accept that my attendance is always subject to how I am on the day. Even the youth volunteering I do, they understand there that the decision is day by day, and that when I’m there, I may need to go early, or have a break and sit quietly for a bit. The other thing is not resisting the urge to go to bed. I’m a bit wilful at times, but if I need to go to bed at 9pm, then I need to go to bed. Simple as that.
In terms of housework, I’m a single dad, and my standard is to ask myself ‘if social services walked in here right now, would they have a problem?’: as long as the answer to that is no, I’ve learnt to let the rest go. I have also recently got someone to come in once a fortnight and do the jobs I find really challenging, like mopping my kitchen floor, and she can do other bits and pieces if I need her to.
tyncwmmarchhywel in reply to
Thank you for your time , sounds like yoy do a good job of s parenting.
Piggyinthecraftroom in reply to
We’ll done you 💕
Hi. I have found that stress is the killer for me energy wise. Giving up work did me the world of good 😂. Also, I used to try and do ‘too much’ which I always had to ‘pay for’ later.
Starting on Amitryptaline 20mg at 7pm helped as I usually sleep ‘deeply’ now.
Pain can be an issue; I slept badly a few nights ago because my shoulder really hurt. Was wiped out for a couple of days.
I am also solar-powered so have more energy in the summer. I have RA and Fibro.
Fatigue has been a major issue for me over the last two years. I used to battle with it but learnt not to eventually. I take a siesta usually after two pm and listen to radio 4 and the afternoon play that l don't often hear the end off. The r and r and short sleep seem to make the world of difference. I definitely don't go out or do anything strenuous these days when l am really tired.
I’ve spent the past year sitting around with my feet up! At least that’s what it seems like! Rest, mindfulness, early nights, meditation, long deep sleeps, doing very little, ignoring the housework, getting out for a walk in nature, sitting in the garden - these are all things that help me. It has been a massive adjustment, and sometimes I hate it so much I want to scream, but sometimes I allow myself to relax and enjoy it 😍
Sounds kinda like me.
Most gps and rheumatologists say fatigue is the one symptom that seems difficult to manage. I’m like Mmrr in that I don’t fight it, and either buy quality ready meals for those days or defrost something I prepared previously. If I need a nap I take it. I also have a Fitbit to prompt short bursts of activity. If your on a PPI you may find your Vit B12 is low. PPIs reduce the amount of Vit absorbed. I took oral and found no difference, then I changed to sublingual and noticed my energy levels improved, confirmed by blood test results being at upper end of range now. I’m also on 5mg prednisolone for life as the long term use of them for polymyalgia has caused my adrenals to atrophy and stop producing cortisol. This brings its own issues, as when cortisol gets low I get very lethargic and have to updose. Basically I have to think for my adrenals, and dose accordingly or I can end up in an adrenal crisis. I had a severe stroke 4yr ago at 52 due to an adrenal crisis, so don’t wish to ever repeat that.
I'll be honest - I cope Really badly with fatigue. It just annoys me so much! No matter how much sleep I have, it seems that I can only do one task at a time before I have to sit down. I have never been a patient person ( recently diagnosed with ADHD) and find it so depressing I'm not the energetic spontaneous person I used to be.And as for the sweating and feeling hot - this seems to be a common symptom- I can spend days with sweat streaming off my hair- yet EVERY consultant send to deny it exists!
Hi so comforting to know others experience similar symptoms. Sweating on my head at this time of year is a nightmare, just going for a short walk and my hair is wet through and I don't know what the cause is. I shower twice a day and am continually drying my hair. Fatigue annoys the hell out of me! Does anyone find the winter months easier re pain, fatigue and obviously sweating? My RA is well controlled on Prednisolone 5mgs and Imraldi biologics but the fatigue still comes and goes.
Yes, the feeling hot is ignored by lots of rheumatologist.
They don't need to be able to control it to acknowledge its existence.
I also have very curly hair since it grew back after the methotrexate. I look like a LLAMA if I start sweating!
When I went for my follow-up appointment with the rheumatologist & said I'm so so tired, even after getting 9 - 10 hours sleep, he just said you're not in a flare, I was dumbstruck & didn't say anything, I could have kicked myself after, I didn't say I was in a flare just bloody knackered all the time, I thought it could be the meds but reading the replies it seems its par for the course 🙄
It does not help a bit when they dont even talk about it,and lets face I think we all need to talk at times,dont we.
I have found that I struggle on for as long as possible and then I end up just having to have some considerable time just sleeping. Last week I had a day when I was just too exhausted to even get up so I went back to sleep. My husband was absolutely amazed that I slept all day, waking only at 5.30 in the evening, then still went to bed at 9.00 and slept until next morning. Sorry that probably doesn’t help you much but at least you know you’re not alone 💕
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