Hi all. I am in need of your wisdom and experience again please:
I have slowly(Dorset Lady way 🙏) been reducing pred for some months now 0.5 at a time from 10mg. Am now at end of slow taper from 6 to 5.5mg. No real problems until last few days when began to get very very fatigued, generalised ache all over like flu (I couldn’t care if there was a £50 note on the floor!) if I do anything; I def dont have flu and it goes if I sit down for 45-60 mins and have no other symptoms. But comes back as soon as I do something like load dishwasher. Also much more significant than usual pain in upper arms (possibly my tendinitis and bursitis or PMR??? ) and at top of thighs/ groin and very bad pain from osteoarthritis in hands and wrists, all especially in the mornings on waking. Which is much worse than usual.
Overall I feel dreadful, worse than I have since the “does she doesn’t she have PMR “* debate began in May 2021 when first had all this. * I think I do have it btw!
Background to this is that over the last 6 - 9 months my wife has needed more and more care and support, culminating in a stroke at beginning of Sept. So I have become a 24/7 carer with disturbed nights and little time away from the role. I have had a carers assessment etc etc and we have a package of care which is morning visits and I get 6 hours of respite a week. And some help from family and friends. So better than some have I think. But rest of time it’s me.
Up till September I was pretty active for a PMR-er. Spending much time as possible outside in nature. I am now restricted to barracks most of the time. With little exercise or energy and v low mood to be honest.
I have read all the fantastically useful FAQs but still can’t fathom how to tell if aches pains and fatigue are carer stress and exhaustion, a PMR flare or AI starting that just has to be suffered till adrenals wake up properly. I had a 5 min consult with rheumatologist on phone a few weeks ago. she has traditionally been unsympathetic and doesn’t think I have PMR as I didn’t respond immediately to 15mg pred and I don’t have blood markers!!! Wants me to reduce pred asap.
Any thoughts or advice experiences on how to unpick what is what and how to mama get it very welcome . Thank you all very much.
BW GA
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Grannyasbo
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I would definitely go down the adrenals track re fatigue...and the only way to nudge them into working is a small steps/ very slow taper as you are doing (although you could extend taper from 5 week to 7 week or even 14 weeks if you wished) - and patience.... (that's probably the most important).
However, and it's a very big however, now you are caring for your wife 24/7 that is putting a great deal of stress on you.. and if your Rheumy is not recognising that then she is a twit..and as for reducing? nah!
Personally I wouldn't be attempting to reduce at all for the next few weeks.. been lot of chat recently about not trying during winter, body is under a lot of stress from cold & wet without adding in illness.
Can you get more support from GP on your PMR , you seem to have help with your wife which is a blessing, but you need help as well.
Sure you've read, but if you haven't more info on adrenals etc in FAQs -
Hi DL, thank you for your reply. I was wondering if fatigue and generalised ache was adrenals but wasn’t sure. Next week is first full week at lower dose (5.5mg). So think I’ll stay at that for some weeks to see how I go. Hopefully it may settle and the suggestion that the cold is a contributing factor is a good one. Hadn’t thought of that 🙏And I do have a lovely GP but she follows rheumy’s advice 😫. But I do think I’ll go and see her and talk it all through.
Wishing you a very merry Christmas and happy new year. With much gratitude for your wisdom. GA
I think it is a bit of everything and definitely a big bit of the pred dose is too low for the PMR.
While in the same position as you last year during my husband's final illness I needed more pred to function, after some considerable time at 12mg or so it eventually got to me needing up to 19mg. Luckily I have doctors who KNOW and accept I needed more than average pred anyway and while OH was ill I had to function - it was Covid from just weeks after his fall that started that final decline as he couldn't have the rehab he so desperately needed until it was too late to improve things. The only help I had was an hour once a week to shower him - everything else had to go hang or I did it. There is no option for online food shopping here except for expensive food and my family are all in the UK. The girls were able to visit once the quarantine regs after travel were lifted - they arrived in a Wednesday evening and he died the end of the following week, they nursed him to the end. He waited for them. I know exactly where you are coming from - when there is no other help - it must be the pred.
I think DL was very polite about your rheumy - I hope your GP is far more helpful.
Hi PMRPro, thank you for sharing your experience. And I am so sorry you had such a tough time caring for you husband. I think I am rather lucky in comparison, but still struggle physically and mentally so I really appreciate the huge struggle you must have had.
A mix is likely as you say and maybe it’s impossible to unpick as they all impact on each other. As DL suggested I think I’ll stick at 5.5 for some weeks and maybe then an increase if no improvement or condition worsens as you advise. And will see my GP as I think that’s wise just in case something else is going on ( I do feel dreadful and a little sorry for myself I admit not my usual stoic self 🥺)
Wishing you a very merry Christmas and happy NY. GA
Of COURSE you feel dreadful - never mind anything else, your life partner is in a mess! All your life has been predicated on is upside down. You are allowed to feel sorry for yourself. But not so sorry for yourself that you forget yourself. If you break - who looks after your wife? That was the scariest part for me as because of Covid there were no residential beds available anywhere. There was a week in the palliative care unit 50 miles away where they did sort him out enough to ease having him at home but nights were awful because he kept getting up. The girls are both frontline NHS staff - if they did come there was the risk of them having an unwelcome travelling companion!
Have you been able to get some mental support? Counselling was available to me but I didn't take advantage of it while he was ill - I should have.
Very wise. And if anyone else is reading this I would encourage them to consider counselling too. None of us are immune to mental health problems and there’s no shame in it. Just normal to need it sometimes. My name is on a waiting list for counselling. X
it’s her mobility that the issue so wobbly and falls over a lot. So has to have me with her all the time for everything. Very grim for her very exhausting for me. Doing exercises and hoping for slow improvement. 🤞 life is very different now as you say.
I went into the village to shop one day and decided it was a lovely day, I'd sit outside the pizzeria and have a Birdy (aperol spritz).in the sun. Payback - I got home to find him lying in the floor in the living room, unable to get up. So I
got a fall alarm from the White Cross - he never used it in the day but did use it one night when he fell in his room and I didn't hear. I was woken by them calling me to check what was happening - he couldn't hear the base unit calling him. One night before he'd fallen and I called 112, our version of 999, and an obnoxious Italian at the central hub told me I should go and get a neighbour to help, that wasn't what 112 was for. This was at 3am! He got short shrift from me and I told the ambo crew who were appalled. Whichever number I'd called it was the same response team and it needed them to assess if he needed to go to A&E as he was on warfarin and bled like a stuck pig!
oh I had a similar experience when I decided to take an extra long shower OH fell over and we spent a night in a very stretched A&E. staff were fab but so over worked. We were luckier as no serious damage done but I now can’t take a shower without worrying….
Oh yes being a carer is not for the faint hearted!
Nights here are rarely overstretched in the ED - but daytimes are really not advisable at this time of year with ski accidents! Can be quite messy at times.
But yes - it's the "what if" thought isn't it. Have you got an alarm? Here you provide them with a key for access and they call you when the alarm goes off so you can explain what if you are at home and where if you are not. It helped a lot.
sorry to read you’re struggling with a lot, grannyasbo. I’m certainly no expert whatsoever, but I’d definitely stay on the current Pred dosage for the time being at least, but I’d no doubt be now speaking to my gp with a view to upping your dosage.
Just get all the tests you can and push for all the help that you can get. You have to look after yourself as well.
Hope you soon get some backup from all the powers that be and I wish you and your wife a happy Christmas and healthier new year.
Sounds very much like I did with my adrenals waking up. I had trouble putting a plate in the dishwasher let alone load it!! It was an effort scratching my nose even. ‘Deathly fatigue’.
Emptying (and loading)the dishwasher is definitely a big part of my daily exercise routine...all that bending and reaching...lifting a kettle is another regular exercise...and vacuuming (that is the most demanding workout...just 10 minutes a couple of times a week).
I was a super fit person before PMR. Now I regard each of these as a triumph! And I don't have any of the mental and physical demands you have. Every little thing that you do for yourself and for your wife is a triumph. Everything.
What you are doing is truly amazing. Don't forget to pat yourself on the back ...if the bloody bursitis allows you to do that! The deathly fatigue will pass (mine is improving after many months).
I have, for one reason and another, had endless challenges in my life and battled through them. I can't battle with adrenals or PMR...that has been hard to come to terms with. And the wise people on this forum have helped enormously in changing my mindset.
You have someone else dependent on you ...do try and get all the help you can. But remember you also need care.
thank you for your kind and understanding words. And I agree the wonderful people on this site are invaluable. And glad to hear the fatigue is passing for you.
Just to add my twopenneth in I was caring for my hubby earlier this years. 24/7 on my own up until I could no longer cope. Because I have other joint issues, it can sometimes be hard to work out what pain is what. My way was to take paracetamol first to see if it helped if it did then I assumed it was not pmr as that pain doesn't respond to any painkillers with me. I actually take opiate painkillers anyway so the paracetamol is my breakthrough pain go to.
However, a caveat, during the heaving and extra caring I managed to damage my rotator cuff muscle in my already arthritic shoulder and looks like I made my disc prolapsed worse too and now have to see a neuro surgeon. So be careful as you may be straining your joints without realising it. I was often fatigued and snappy and grumpy too. That's when I knew I needed some help.
My hubby went into a Hospice following a fall. For the last 4 weeks of his life he was well looked after and we had quality time together. So make sure you keep an eye on your own health and push for as much help as you need. Be gentle on yourself x
sorry to hear about your Hubby and am so glad you had some positive times together before he died, hospices can be fantastic places. Sending my condolences.
Yes i am straining my back and other joints sometimes but as you probably know I have little choice. Am trying to take as much care as I can.
And thank you so much for mentioning being grumpy. It’s such a tough thing but I am sometimes and then hate myself for it. Everyone tells me it’s human and it’s ok so it’s reassuring to hear from someone who has been through similar things
I hope you are also able to take good care of yourself. All the very best wishes GA
See what you can learn about caring for a disabled spouse. Might be something online; I was a trained nurse before becoming an anesthetist. We learned little tricks to save our bodies. Using a lifting device to put person on the commode; using a draw sheet to help position a person in bed. A draw sheet is a squared sheet put under the person’s trunk and hips . Is there a visiting nurse to show you such techniques?
When my mom was terminally ill I didn’t have the strength to change her nappy. She was totally immovable.
Oh yes - I was queen of the grumps. I was so tired!
My nurse daughter showed me loads of tricks at the end but they were no use for an untrained person on her own - even Nat needed someone to help her. She demonstrated some of them to the community nurses who were still lifting in ways the elves from safety would have had fits about.
So much of this thread rings true for me. Deathly fatigue, lethargy, dizziness, weak muscles, and more. I decided, with the help of posts on this forum, that my main problem is adrenals having their two pennyworth (I'm on 4mg on a very slow taper from 4.5) after nearly three years with PMR.
I have decided (thanks to a mistake by surgery I have lots of spare Pred) to stay on 4.5 for the Christmas / New Year period. If that doesn't make life more comfortable I'll speak with my GP.
I also care for my wife who has dementia, thankfully mild at present but progressing slowly.
I wouldn't have coped without this Forum and am very grateful to all.
Amazing, isn't it, how we are constantly having to reinvent our self, coping, then looking back on it asking: "how did I ever do that". I went undiagnosed with PMR for years. I now look back knowing I took care of Mom with terminal cancer, had cancer and surgery myself 3 years later, had another surgery a few years later, then another, then another. All the time while finding everything just a bit harder than those around me; Not knowing it was PMR. I was told by professionals that I was "deconditioned", or that I needed counseling. I have truly come to despise the word: "Deconditioned". Anyone who says that to me can bite me. That is the insidious part of this illness. we don't look sick. But, everything, everything comes harder than with others. It is kind of like running a relay race, and you are the only one with a frigging boulder chained to your ankle. We adapt, we reinvent. We find ways to clean the house in tiny pieces. Those who do not know may call us lazy. When the truth is some days faith means just getting out of bed and putting on our shoes. Any rheumy that does not understand that is whackadoodle, and best left alone . I have been on prednisone for over 13 years now. Am on 5mg. My rheumy refuses to let me go lower. He knows my situation. I am blessed to have him. Have you had your heart checked? I just learned I have small vessel disease, on top of everything else. I also become easily fatigued. In our case I am the sick one, not my spouse. I do everything I can to remain independent. Challenging! Your situation is so hard on both of you. I am so very sorry.
Some days I pray for the strength to make meals. Fortunately my husband, age 88, is healthier than I am . He knows how to use the micro to warm meals up.
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I was caring for my hubby earlier this years. 24/7 on my own up until I could no longer cope. Because I have other joint issues, it can sometimes be hard to work out what pain is what. My way was to take paracetamol first to see if it helped if it did then I assumed it was not pmr as that pain doesn't respond to any painkillers with me. I actually take opiate painkillers anyway so the paracetamol is my breakthrough pain go to. 
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