at the moment I am on week three of tapering my Preds from 8mg to 7.5mg all is well, I am comfortable and no pain anywhere, BUT , I am so tired all of the time, I am so so sleeping at night - some good, some bad nights but during the day I am like a Zombie staggering around, literally all I want is my bed, even if just to lie there feeling so comfortable. I have neither the will or ability to do anything not even my knitting and Patchwork , I have to force myself to cook anything to eat, I am just not interested , within 15-20 mins of being up I only want to crawl back again, If I make myself stay up I just drop off to sleep on my chair!
|Can anyone please give me a kick up the btm and help me to get motivated again, this is so not me
Thanks all xxx
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seamaid
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I know what our advisors are going to say! Too much too soon. !!! I’ve had just that reactio n and have had to learn.. that whatever your gp or Rheumy say! It has to be oh so slow.. ! Have a look at the tapering advice. I don’t know if us in our eighty’s ( am 84) are more impatient than younger ones.., not so much time left perhaps?!?!?I have been doing 9 one day and 8.5 the next… just managing but nothing like energy before pmr! Going to try for 3 weeks.( No actual pain in arms and shoulders since starting pred a year ago) but overwhelming fatigue some of the time.. brain fog, dizziness.. blearyeyed! Such fun!!!!
Just as well I didn’t get the last job I went up fir( I’m an actress) as I don’t think I’d remember my lines.. and this is as well as muffled ears after Covid. Ok I’ve said enough!!! Byeee
Thank you Bedwell I think I may have mislead you but I am reducing so slowly - 0.5mg every 5 weeks following Dorset Lady.s tapering plan, it has taken me 12 months I started on August 10th last year , to drop from 15 mg to 8/7.5mg and am pleased with that . (I am 81 knocking 82 in December LOL)
Ah sorry seamaid! You’re being very patient. Patience is not my middle name.. but it is a hell of a struggle! My sister has pmr I’m sure but she’s not going on steroids because she seen what it’s done to my life! She’d rather take painkillers and ask fir help when dressing or trying to open a tin!!!!
I will start my taper from 8 to 7.5 soon, I hope! . It has been taking me about two months to taper just .5. The taper from 8.5 to 8 was very slow. If I didn’t feel ready to do an 8 on any one day, I stayed with 8.5 another day, and tried again.
This is the sort of dose that many people start to experience their adrenal function lagging behind the reduction. They will tell you it doesn't happen until 5mg or less - but in practice from 10mg on can leave people feeling totally wrung out.
You have just encountered the Deathly Fatigue!! Your adrenal glands have been happily asleep while the steroids did their work and now they are being told they have got to start back to work and they are complaining! A zombie is a good description.
You could be my twin sister! I’m at the same stage as you, and feel just the same way! I’m blaming the hot weather although shouldn’t moan - it’ll probably be minus 2 in 4 months time! Let’s be gentle on ourselves. 🌺🌺
Well, I recognise that exhaustion and bed being my only comfortable place. I am hovering around but on 6 mgs currently. I have been experiencing dizziness and nausea too. It has to be adrenals but it feels flu-like. I have tapered by half mg drops since 10 mgs. I cut 1 mg plain tablets with a sharp pill cutter. Unusually I am sleeping until 11 am with a few wakeful times, one I use to take Pred which used to be 2 am but now seems more like 5 am. I usually have a 90 minute nap after lunch this is slipping to 4 or 5 pm. It would be easier if these times stayed the same but they are on the move. My Endocrinologist wants to see me when I am on 5 mgs. I know he will want to move me to hydrocortisone 4 times a day to stimulate my adrenal function. It is weaker than Pred and more closely resembles a natural adrenal function. I worry that GCA/LVV is not quite done with me and there will be PMR type pain. My GCA is extra cranial so the key symptoms of head pain, jaw claudication and sore tongue are absent. Just constitutional symptoms that make me feel significantly ill. Hydrocortisone is not much help with this. Perhaps you need the input of an Endocrinologist too? I don’t honestly think any of our specialists know what to do with fatigue. Regular sleep and naps have given me an element of control. I suspect the use of steroids over a 6 year period has worn me out.
My sleep is playing up again! Are adrenals confused by reduction?! I wake at 4.30! Can’t go back to sleep. 😠 I’m doing DL 7 week reduction plan and on week 3. All going ok … few niggles yesterday with bilateral shoulder and neck so rested with paracetamol on board and felt ok.
Thanks very much for posting this SeaMaid as our current experiences are very similar (as indeed are our ‘names’!)I have been using Dorset Lady’s slow taper with a number of pauses and slight steps backwards at various crises including my wife’s death in November. Since then I have resumed and was giving myself quite a few pats on the back as I reduced down to 7mg. I then started to experience a few aches which I put down to some over-energetic yacht racing! Then decided it was time to take half-milligram steps down to 6.5 but that has simply not proved popular with the adrenals! I’ve decided to stick on seven for a few more weeks before trying again as pauses on Week 5 ‘full new dose’ seems to work quite well for me.
The fatigue and lack of energy seems to be an ongoing problem and I wonder all the time is it PMR or the steroids or simply the fact that I am 76 this month and not 56! Considering that I’m back since Easter helping out at our church as Rector off sick, ‘Hopingsail’ should now read ‘Goingsail’, my garden is producing veg and looking good, and my prostate seems to be behaving - things could be much worse!
Am so very grateful for all the wisdom from our Gurus on here and for this posts timely reminder of the ‘7 Barrier’ which as ever requires patience and listening to our bodies.
I am not quite as sleepy as you but I find the less Pred I take the worse it gets. When I sit down I fall asleep especially if I am watching tv. I wake very early and only get a few hours of good sleep. I call I cat napping.I have just had a flare but am coming thru it now (panic always sets in that I won’t).
As someone suggested, be gentle on yourself, but don't give up, keep pushing with some activity a little bit every day. I would suggest avoiding stress as a stimulant and sticking with physical activity. It will pass.
I can understand how you feel. Twice I’ve managed to get below 10 mg and twice I’ve ended up off work due to the chronic fatigue. A zombie describes it very well. I’m just back at with after two months off and I’m staying at 10mg for more. I always know when I’m really tired as I have no motivation to do anything and that includes knitting and eating. Oh well at least I’ve lost done if the weight I put on lol…
There is light at the end of this sleepy tunnel. We’re just taking out time getting there.
Poor you, Seamaid. Patchwork is my saviour!Just a thought; there are other reasons for fatigue. Perhaps a blood test would be a good idea?
Earlier in the year I was experiencing fatigue which I put down to tapering etc..
BUT, my blood sodium levels were low, and I collapsed, and ended up in hospital having fractured my shoulder when I hit the floor.
I had I.V. saline to get my sodium up, and was on restricted fluids for a while.
I had been on Lisinopril for hypertension which was thought to be the culprit. But Omeprazol can also lower sodium. I'm still taking that , but having "conversations" with GP about stopping it. (I'm on 4.75mgs of pred at the moment.)
I'm ok now, but yesterday requested another blood test as I'm feeling tired again, but not quite The Deathly Fatigue that you have.
It’s the same for me as nearly all the above contributors. I was uncomfortably on 7mg when my husband died 18 months ago. So I stayed on 7 for awhile. Aching. Then tried 6 and literally went to pieces. Vision double, aching, staggering gait, etc. Back to 7, where it was better but not good. Up to ten with worry over eyes, then down slowly to 7mg with same results which got worse and worse. These judged to be unsupressed disease. So back up to 10 mg. Don’t sleep well, staggering through the day in my chair! Doing little. Only anger seems to get me going, but that never lasts long. I’m not sewing, gardening, or cleaning. Not sorting too small clothes or books I can no longer read. I chair a Local group, and think I will have to ditch that. I cannot drive, feel like my life is over. It seems to be disease at 7-10mg. Clearly adrenals at 6mg. Dr watching GCA. But what I was going to say is that I was found to have very low Hb. When treated, I was able to wake a bit more, but not much. Activity is the only thing that gives me sleep. Otherwise it is 4 or 5 hours a night, and I am truly exhausted by that. It takes all day to make it up to 8 hours, and then I feel almost human, just in time for another sleepless night. I’m 83. Retired teacher. I truly have no hopes of ever getting better. I have been on Pred for over 3 years now. My mother had it like this, too, and eventually got better. But it was years long. She lived to 103, though.
Speak to your GP - because lack of sleep is almost as bad as being ill. Even if it is only something to take occasionally to break the pattern of poor sleep you will almost certainly find it helps a lot.
Lots of people will have tips that help them - but one is not to lie and toss and turn, Get up and do one of your hobbies until you feel sleepy and don't consider sleep has to be in a single dollop between 11pm and 7am - our natural sleep pattern is actually to be wakeful after an initial sleep and then to sleep again.
I had the same response at around 7mg. I went up again for a while, but when I got down to 7mg it all happened again. I knew it wasn’t a flare so battled through. Sometimes, if it’s possible, you just have to go with it, turn on the telly, get simple food delivered and snooze through it. It does get better, until the next stumbling block, for me that was getting under 3mg! Take care of yourself seamaid.
I know there is talk about the tapering having cause. Can I just say that I have been stalled at 7mg for 2 years now due to covid. My sleeping has not improved and I am totally with you when you say you are like a zombie during the day. I was also diagnosed with fibromyalgia alongside the PMR which accounted for the profound fatigue, especially in the morning. I have difficulty sleeping at night and have tried lots of different strategies to no avail. Oh, and my Rheumatologist has retired and they can't find me a new one. So at the moment, I am my own Rheumy. I hope you get to the bottom of your issues. Give me a shout if you do.
I am so sorry to hear about this, it is the non sleeping which bad, but then again , the Zombie hours are pretty rough, even more so for you with the Fibro as well. what is your GP like ? I am very lucky as my GP and I are on the same wavelength , much better than the Rheumy I had. I am just gently jogging along and hope I reach zero one day LOL but no rush, I hope all goes well with you. All best wishes.
You are a companion indeed. After 3 years I am at 7 mg and we are feeling exactly the same. I posted when I was at 8 mg, I believe, I felt I was nearly comatose. Just a short while ago,I was sorting some things to place on new shelving and suddenly I felt so tired. I sat in the recliner...that was 3 hours ago...not such a short time. I've felt so much better after taking advice and let my body be my guide. Tired=sit=rest=sleep=appreciation from your body. There are good foods to eat with out cooking ~!! As the forum says.....Never Alone 💕💕
So true. Pure gold! One gets so discouraged. Have completely stopped cooking, not least because the heavy food is not appealing. Have to really focus just to get dressed. Showers are anathema!
Good for you! Don't cook. Use your energy for what you enjoy....unless you are expecting company, order a few comfy things from Amazon that 'pass'...like those nice loose dresses. Keep the good attitude...that is medicine in itself.💕💕
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