Is this normal / to be expected? No return of symptoms, but not much energy. When I look at all the things I need to do in the garden and in the house I feel submerged. I'm just trying to break it up into manageable bits and get on with things, but it's not always easy to feel I'm not sinking! I'm thinking this is the adrenals trying to kick in and that it's just a stage I need to get through. Anyone else feeling overwhelmed?
Feeling overwhelmed by things on 4 mg of Pred, ph... - PMRGCAuk
Feeling overwhelmed by things on 4 mg of Pred, physically ok, but need to make an effort not to despair!
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Dochaz
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Yes, feeling overwhelmed by nothing and lots of crying was a familiar issue on low doses of Pred. It’s not the adrenals trying to kick in, it’s that they are not producing enough cortisol at the moment. When they are working, you don’t think about your day, you just do it. I just had to try not to over do my capacity to cope as much as I could until things improved.
DorsetLadyPMRGCAuk volunteer
Adrenals not helping for sure, but as SnazzyD says low Pred dose as well….
Yes! I identify with everything you've described - for me, it did get better after about 3 months on 4mg. But, as soon as I felt in a better place, it was onto starting the next reduction and the cycle started again.
I'm now down to 3mg and on the really bad days I feel tempted to go back to 4mg for a few days just to have a break! Trying to persevere though! 🙃
This so very familiar to me - a struggle at every drop in Pred. and feeling swamped. However, I'm now at 2mg, so feel I'm hopefully getting there. I've taken it incredibly slowly thanks to this forum.
I am familiar with these feelings. As you approach recovery all your responsibilities are crouching, waiting to spring. Would it be feasible to employ cleaners to do a one off spring clean and a gardener to break the back of the gardening work? Of course your anxiety, caused by the taper to low doses will still look for a hook to hang itself on, but at least you will have a manageable house and garden.
I gave up my cleaner when I retired. My income took a serious hit! But it's just me and OH at home now, and what doesn't get done one day can wait. It's just that on down days like today I only see what needs to be done and not what HAS been done. I'm sure tomorrow will be different.Same in the garden, it's small and manageable as long as I stamp down on my ingrained desire for perfection!
Thank you for your suggestions 🌼
I have been trying to sort out drawers and wardrobes, it is an endless task but I have no storage left and it must be done. I have sent heaps to Charity shops and recycling. All clothes from different lives, working etc and different sizes I’ve been. It is very satisfying having half empty drawers with things neatly rolled inside. Exhausting too, but liberating. The spring clean will be expensive but worth it I hope.
Come and help me sort out my one wardrobe!!!!! I just keep looking at it ...
Exactly … It’s the difference between what needs to be done and what has to be done. On down days what needs to be done really does get you “down”.
Talking of “ down “ the bending down jobs are the hardest of all. They make me feel exhausted and exasperated. Impossible for others to understand that just reaching down into the back of a cupboard makes you feel so awful.
That's why ALL kitchen cupboards should be replaced with a set of drawers - then you can get at that heavy casserole at the bottom at the back without killing yourself! I put that in my last 3 kitchens - lifesaver!!!
Same! Smooth sliding drawers in my kitchen and a corner rack that pulls right out. As near paradise as I can imagine!
Tenant, so no choices, including the cooker. Fortunately there's a top oven in which I can brew up veggie concoctions and put them in the freezer. Heavy casseroles are out for me because even if I can lift them empty I can't lift them full. Narrow shelves on castors are a huge blessing, all the jars of dry goods, veggie rack, store food containers and so on, just pull out as needed.
Hopefully we are having a new kitchen later this year so I shall make sure it’s designed with that in mind. Thank you for the suggestion x
They are very common in kitchens over here - I had my first sets in the kitchen I designed courtesy of IKEA in 1991! A local kitchen designer had scored a resounding FAIL so lost the job, I do notice they seem to be a feature in kitchens that I see in ads on TV in the UK now. You do need to look at the devices you have - a relatively tall processor that you want to put away to clear worktop space may need a cupboard where you can alter shelf spacing - my ideal then is a tall not full depth cupboard so you can put heavier things a bit higher and not have one thing in front of another. But there are also cupboards with a shelf that you can pull up to line up with the worktop for heavy items so you don't have to lift them.
Lots of examples for sliding units and shelves if you would rather have normal doors rather than a set of drawers
Age UK will certainly arrange a one-off and say this: 'As a non-profit organisation our Help at Home Service charges are based on the actual cost of providing the service.' I'm retired too and definitely not high income but my flat has taken a hit during a winter that wasn't good and I'm thinking of getting them in also for the psychological value. Fresh start!
I'm not sure I would qualify for that here in France. Not handicapped enough 😂
Hallo Dochaz,Take heart.
It will get better.
One day you will find that things you have not been able to do seem easier.
We all get the down days.
Do what you can . Don't strive for the impossible.
My hands, after six months, are usable once more.
A kind soul on here told me they would get better.....and theyhave...I can feel my hands again. They function and are warm .
I still take the original 15 mg per day prednisolone . Cannot manage with less. Is 4mg enough?
So I say if you feel better on a higher dose then your body knows best.
Only you know how you feel.
Be patient with time....it is the only way.
I'm reluctant to go back up to a higher dose. I feel ok on 4 mg, no pain, just low energy. As everyone here says, it's something you just need to get through. It's good to know things will get better eventually. I've read all the advice about pacing. Now I need to put it into practice!
When you get to these low doses the fatigue bit is something most people have to go through to allow the adrenal glands time to wake up and realise they need to do their bit too. It isn't a lightswitch moment from not working to working, it's more like a dimmer switch working its way up and sticking now and again! Taking more pred might well make you feel better but it also only delays the evil day - the only thing that persuades the adrenals to wake up is a low enough dose of pred.
good days, bad days - it’s become a pattern of my life 1 am still on 5mg of pred & have almost given up even thinking of tapering as it’s more about coping & managing life day to day. I know it’s all about pacing & trying not to overdo it but after nearly 7 years it is wearing. Totally understand.
Thank you for your post. I am somewhere between 4 and 3.5mg (tapering using DSNS method). I long for the days when I was on a higher dose. I live alone and there is so much to do....I try to do 15 minutes housework stuff twice a day....and I have to work (all online) but I can't believe how hard it is. I feel like I am depleted the whole day, every day...lots of helpful comments here...we will get through it...one day...though I hardly believe it at the moment.
Sending positive thoughts your way. Thankful for all the people here who know it gets better in time. 🌼🌿🌸
Can so relate and comforted by your post. Was on 4 mgs for 2 years then made it to 3.5. However after major downsizing move 2 years ago I still have things in boxes. Made decision to stay at 3.5 and leave boxes! If I haven't needed that stuff for 2 years......?
Oh yes! But I feel like that anyway! I have a house to redecorate - we moved in 2018 - and I don't want to spend my whole retirement doing it. A year with worsening PMR and GCA before diagnosis when I did very little didn't help. I can't afford to pay someone else, except to paint the ceilings which would totally finish me off. Hubby works full time and has another hobby job evenings and weekends. At this time of year there's lots to do in the garden so I'm torn between painting and gardening. Then there's my car MOT due, house insurance, doctors appointments, chasing the roofers, chasing the solicitor for getting the money we were awarded by court (been waiting 2 years now) etc etc. I start every day with determination to get this and that done, but rarely achieve it. After breakfast I do emails and that can take 2 to 3 hours. But it's comforting to know that I have the support of people on this forum and that I'm not alone!
absolutely! I was thinking about moving house yesterday, & we love where we live! Then I realised weeds & dust don’t really matter! I’ve had a guy come round & he’s going to manage some of the bigger garden projects that, normally, we would love to do ourselves! I’m at 2mg & have symptoms of adrenal insufficiency, & assume this goes with it!
Great news there's no return of symptoms! I am feeling agitated in the day and depressed in the morning on 4 - very easy to be overwhelmed and throw a wobbler. The best way of dealing with this, I find, is to keep telling myself it is only temporary, and one day I will wake up feeling better. This has happened so many times, I know it's true! Also keep practicing positive mental health techniques.
Well Dochaz you really started a thread there ! So many of us can relate. 🦋🦋🌺🌺
Bless you Dochaz . I love this forum cos makes me feel that I am not alone for feeling some days just trudging up hill and not getting far . I think we just have to try as women to not feel guilty about needing to rest . I think society has programmed us to carry on even if feel rotten . I dont mean just giving up but if need to sit down or have a snooze its ok .
I am lucky i have not had or got severe pmr but i have struggled to reduce from 5 over many months . I have had minimal support from gp . I ring for repeat prescriptions and get them and gp panics every so often and asks me to ring to make an appointment which as you know is the 8 oclock scramble . Took me two days to get one not with gp who asked for it as she was off and i was nearly out of medication . I was down to 2.5 mg and felt doing well tapering each month by 0.5 but got usual lecture from a locum about need to get off pred just felt like saying "you are teaching grandma to suck eggs "but not rude by nature and know gps are very stressed so reassured gp that i am trying my best and aware of risks but also didnt not want to feel ill by stopping completely all of a sudden . I explained that I did come off in January but by february when leg aches and back pain and tiredness returned i went up to 3 and was better . I have felt tired and for some reason the constipation that i got when first went on high dose of steroids over two years ago has returned but better past two days . I wonder if this is adrenal related .
Anyway I am down to 2 mg now and hope to go to 1.5 in June but I know this is not a race and wish doctors recognised that . Sometimes I feel like they think we are addicted to prednisolone which is not the case . We know there are side effects and risks in the long term but we have to be able to live with minimal or no pain from this if we can . Sorry to go on . This was supposed to be about you Dochaz !! take care xxx
Thank you, Mofred. I had bloods done today. Slightly raised CRP (9.4 mg/L) and ESR (20 mm) which are both up from last time a month ago, but not through the roof either. I feel ok, but have had a good old-fashioned cold for the past week, so that probably influences the results. Good for you getting down to 2 mg!
Dochaz I recently reduced by 2 mgms from 5 mgms over about 5 weeks. I felt EXACTLY the same : Overwhelmed . I have committments and projects and family life and felt no energy , paticularly mentally and emotionally . Unable to manage keeping up .. Sleep went astray . This week my body came back to normal though I do have backlog .
Interesting how sleep settled .I tried to break things down and believe it would be worth it .
2 words came to mind to describe the experoencr
I felt Awful . I felt Overwhelmed .
Thank God , back on track , a few steroids less , and zero sign of PMR .
I can see this is going to take time , a few years even .
Cheers
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