I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth.
Since being on prednisolone, all of these things have become considerably worse. The poor executive functioning and aphasia are making things tricky at work but I'm most upset about the clumsiness which is costing me a fortune! Since the end of February, I have broken 5 mugs, 2 plates, a jar of jam, a bottle of soy sauce and - most annoyingly - a virtually full bottle of gin. I've started using my least favourite mugs, plates and bowls as I'm so fed up with breaking the ones that I love.
It's all part of life's rich pattern and much better than the alternative but SO FRUSTRATING!
Okay, moan over - I feel better and perhaps someone else out there will feel better for reading this nonsense.
I didn't have the excuse of dyspraxia! I broke loads of things - something I just NEVER did. I could knock anything over, my judgement of distance was off somehow. I didn't like driving the car through narrow lanes - couldn't overtake a lorry on the Brenner motorway!!! I never had an accident but I broke a lot of stuff ...
If it's just a phase it's been going on for my whole life!
I am definitely affected by hormonal fluctuations and was always much more clumsy in the days leading up to my periods however, HRT had smoothed out those fluctuations. Things have become significantly worse since starting on the pred. To that extent, I suppose it is a phase and will improve as my dose of pred drops (currently 12.5mg/day).
You are not alone. I have noticed I am much more clumsy, butterfingered, tend to misjudge distances. I feel quite confident driving, but reverse parking not so good. I think I am perfectly aligned to the kerb and then find I am not! What I wonder is - will things improve as the pred dose goes down? Currently just reduced to 10mg. Pity about the gin!
The gin was definitely a low point! My speciality is dropping a mug or bowl into the dishwasher which has the potential for much collateral damage.
I believe that things will improve as pred reduces. How are you finding 10mg? I'm dropping down to 10 on Saturday and feel a little worried as I don't feel as well on 12.5mg now as I did on 15mg before I dropped to 12.5mg (does that make sense?).
Dropped from 12.5 to 10 on Monday. so far so good, though I felt very lethargic and out of sorts yesterday However I also yesterday had to go to the Older Persons (!) Unit at my local hospital for much overdue Zalendrone infusion for osteoporosis - bus journey and walk in both directions - so that may well have had an effect. The most dramatic day I've had in ages which says something about life these days. Do hope your drop down goes well. Make sure you've got another bottle of gin.....
Before I reduced from 15mg to 12.5mg I felt really well, full of beans and was almost completely pain-free. My consultant wanted me to reduce straight from 15mg to 12.5mg in one go, to stay there for a week and then go down to 10mg, with no taper on either occasion. I have managed to extend the period at 12.5mg to 4 weeks but I'm now under firm instructions to reduce to 10mg.
I don't feel as energetic as before I reduced from 15mg to 12.5mg, I have really, really lethargic days where I feel as though I have been unplugged from the mains, and am experiencing more pain and stiffness - although it's only 3 - 3.5 on a 10 point scale.
The difference is that I am back at work. I am meant to be on a phased-return but it has proved to be impossible. I run a unit for autistic pupils at a mainstream school - it's a full-time, very specialist role and there is literally no-one who can cover for me. There is no-one in the school who has the specialist knowledge that I have and no-one who wants to step into my role. My deputy took to his sick-bed as soon as I did my first day back at school and has been off for 3 weeks. He is now also on a phased return and refusing to do most of his own job, he's certainly not going to be stepping up to ease my burden. Senior management are very understanding and supportive, indeed they staged an intervention at 3pm last Friday because I should have left at 1pm but, the fact remains, that it is not possible to do my full-time job in the 2 full-days and 2 half-days that I am meant to be in. I think that I am using far too much of my limited cortisol dealing with the stresses and strains of my job meaning that there is barely enough to deal with the PMR inflammation.
I'm absolutely at my wits end. I know that, in theory and in law, the responsibility to provide cover for my absence lies with the school's senior management team but I also know that there is just no-one to do it. I was finding going home at 1pm more stressful than staying on because I had to spend most of each morning dealing with things that had arisen in my absence. Much of what needs doing is a statutory responsibility so legally needs to be done but more importantly, I have the responsibility for the emotional wellbeing and mental health of 11 very vulnerable young people. I can't just stay at home.
I know that I need to look after myself. I repeat mantras such as 'first put on your own oxygen mask' and 'you cannot pour from an empty jug' to my team over and over but I just cannot think of a way to prioritise myself. I think that I am just about hanging on at 12.5mg but that as soon as I reduce to 10mg the inflammation will take over.
My GP practice is useless, the rheumatology nurse team at the hospital who have until now been fantastic seem to be having staffing issues of their own and are almost impossible to talk to and the consultant was adamant that I didn't need to slow taper and that I should drop 2.5mg in one go. Her response to my concerns was that if I didn't try, I wouldn't know whether a rapid drop would work. I can't take the reduction any more slowly because I don't have any spare pills - trying to get a new prescription from the GP is like trying to get the proverbial blood out of a stone.
Sorry. I've just spewed a stream of consciousness on to the screen. I hope that this makes sense.
Oh yes - makes sense alright and you have already outlined what I would say so I won't say it again. Believe me, when YOUR health means you are forced to go off long term sick and even retire early no-one will erect a monument to you saying "she gave her all". Six months after you have gone, they will be saying "Who?"
Your rheumy is being a prat - probably never done a job when sick and doesn't appreciate that she is playing with fire at your expense. And probably doesn't have a lot of experience of managing PMR well. With that attitude - which has absolutely no parallel with any recommendations or guidelines I have ever seen - she is making working even harder for you. All you can do is drop and, when it goes pear-shaped, say I told you so. She does have a point - it DOES work for some people. But only down to 10mg - beyond that it must be 1mg at a time. Unless - and I suspect this is the real case, she is convinced it isn't PMR. it is late onset RA and she is hell bent on proving that at your expense.
It really is a shame you aren't under Max Yates - he cares about his patients ...
Thanks PMRPro. You're absolutely right, I know you're right but it's so difficult when there's a job that needs doing. I feel that I'm letting my team, and the pupils down, when I'm not there because it makes life so much more difficult for everyone - when I returned to work after 7 weeks off the place was in absolute disarray BUT if I were hit by a bus tomorrow they would have to manage without me. I have listened to you (and myself) and am not in school today and will endeavour to be much more sensible (and much less of a martyr!) next week.
In general, I have found the consultant to be sensible and empathetic - as has a work colleague who was recently diagnosed with psoriatic arthritis and has the same consultant. I do think that she's wrong about this but have no option but to do as she has proposed and hope for the best. Watch this space ...
Do you have 1mg tablets? If so, you could try dropping by smaller amounts - say to 12mg, 11mg, then 10mg ..... We read here that we shouldn't taper if we don't feel so well. Are you under pressure from a doctor to reduce your dose?
Take care and sorry to read about the breakages. 🌷
Alas, no smaller tablets and very firm instructions from the consultant about reducing from 12.5mg to 10mg rapidly then a month at 10mg before a similarly sudden drop to 7.5mg. She refused to entertain a slow taper or smaller drops.
Oh the Gin! I go through phases of clumsiness, or impaired judgement of where things are, eg reaching out for a glass (of wine). One Christmas I knocked over 3 in succession, much hilarity from my family. That made me really concentrate & it did help. Parking the car too, I rely on my cameras & sensors these days, my judgement is not what it was. But parking spaces really are getting smaller aren’t they!
Cars are getting silly bigger!!!!! I was stuck in the showroom of my VW garage recently waiting for a new battery - I'd forgotten to stick the Kindle in my bag so had to resort to looking at the cars. The smallest normal VW is a Polo, I drive a Passat which is the biggest estate/combi/whatever you want to call it (not an SUV, vile things). The latest Polo is almost as big as my first Passat was some 21 years ago! I'm not sure the new Passat would fit in my garage ...
You're absolutely right. Modern cars look as though they're on steroids (but without the low carb diet). Have you ever compared a 'proper' mini with one of the modern ones?
We have a big Volvo, not SUV, but very very long! However, I parked in a forest car park beside aMini the other day & David said ‘well, look at that, it’s almost as long as Volvo’!! Daft, I call it! S x
I pretty much use only IKEA plates and glasses. Cheap and easily replaced. Have had eye issues (macular holes x 2) so never use wine glasses - so tippy and easy to knock over. You are definitely not alone. I am always walking into walls.
We have lots of Ikea glasses too - they are never the ones that I break!
I bet that those pesky walls jump out to hit you just as the ground deliberately trips me when I manage to trip whilst walking along a perfectly flat piece of lino at school.
Hi. Glad you’re feeling better for a good old moan. They are just things of course but sometimes those things do have sentimental value. I have a few favourite mugs that if I broke I would be sad. And then there’s the effort of clearing up. I haven’t had to do that so far as PMR is new but the thought of having to pick bits out of a dishwasher feels like climbing Everest today. And yes “the gin”!!!! Poor you. Wishing you a lovely and positive day today.
Thank you. So far, the worst thing to clear up has been the soy sauce. The dogs were desperate to try and lick it up and the shards of glass, as well as the sauce itself, went under the fridge.
Nothing broken so far today ... but there's still time.
Thanks Constance13. We do have melamine equivalents but I don't really like the sensation of drinking from them. Also, it's easy enough to make a change once one has identified a need - it's taken a while to acknowledge and accept that I'm worse than usual!
All my life I've had very steady hands, could never understand why people couldn't wrap a parcel or present properly. Since PMR I understand completely. The sticky tape sticks to everything it shouldn't. The paper goes every which way. Something I absolutely HATE. Will this get better? I don't drink/eat anything with caffeine, because years ago I found it made my hands shake. Now they just shake anyway.
I'm sure that things will improve for you as you reduce your pred although if your hands shake all the time it might be worth being checked out by the GP.
I don't have dyspraxia or aphasia but since being on Pred I have noticed increased clumsiness. I have broken/dropped many things over the last 5 years. My most spectacular was dropping cold cooking oil then slipping over and managing to smash my oven door with my elbow. Very expensive fall that one as it resulted in a new cooker as the price of the door was more than a new cooker!
As for aphasia, I was discussing this on the phone with a friend of mine with MS. She is treated with prednisolone infusions every six months and says she's often searching for a word. We had to laugh as we were helping each other find the words. I likened it to chickens scratching around in my brain trying to find a word that I should know really well. Often I find that I am trying to find the word by using other words that describe the word I want! Very confusing for people I am talking too
I guess this isn't just a Pred problem but part of the brain fog of autoimmune conditions.
Hi S4ndyI feel your pain! Your drop/slip/smash sounds extremely traumatic! I sincerely hope that there was someone else to clear up the mess?
I was giving a talk to student teachers this morning and completely forgot the word idiom - I felt such a fool! I also told them that, on the basis that new research suggests that the prevalence of autism is about 1:50, they could expect to have up to unidentified 5 autistic pupils in each class of 30 pupils. I mean, yeah, UP TO 5 but more realistically one or two per two classes. I hope that they didn't discount everything that I had to say on the basis of my evident stupidity!
Luckily a friend rushed over on his motorcycle to help with the clear up. I was bleeding and there was shattered glass mixed with blood and cooking oil on the floor! By the time I had showered off the oil and dressed the very small cut my hubby and our friend had made all the mess vanished. I was an emotional mess but I soon got over it
I sympathize with your brain fog/aphasia. At least when I can't remember a word it doesn't really matter these days as it's usually with a friend or my hubby. I am sure your students worked it out for themselves 🤗
Goodness, that all sounds extremely traumatic! I'm so pleased that your husband and friend were on hand for the clear up.
You’re not alone! I ‘chuck’ stuff! Left hand is worse...pick up a plate of food & five seconds later it’s wobbling like crazy, give it a full minute & it can be all up the walls, over the floors etc! Basically, I’m banned from carrying food and drink these days! As for wrong words, we call it ‘wrong worms’! I have phases of it...& we call it a ‘wrong worms day’...!! Trying to find humour in these situations helps us...most of the time! S x
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My poor face!
dizziness and poor balance
Energy and motivation hasn't really returned after Pred
Feeling a bit strange
First Rheumy visit.
