During this condition we are all on some medication or other. Sometimes we feel really low and what with one thing and another we tend to project this in how we speak. I also noticed that PMR seems to affect the vocal chords. How we sound affects how others react to us in that if we sound "old" or "feeble" then others treat us as such and tend to talk down or believe we won't be as "with it" as someone who sounds more vital or proactive. I genuinely believe this and as such always try to project a more focused and dynamic voice when talking to others. I hadn't realised this until a good friend recently said that he was glad I sounded like my normal self. When we are low and feeling sorry for ourselves it is so easy to fall into the frail voice. Just a thought.
How We Are Perceived: During this condition we are... - PMRGCAuk
How We Are Perceived
Suppose when we are fatigued our voices are not so dynamic!....Sometimes people say to me on the phone...you sound better today.......we can`t sound bubbly on a bad day I suppose...I know I can`t!
my Som knows when I’m having a bad day he says I slump and look smaller .
it's difficult isn't it. If we project an "all's well" appearance people say how well we look even if we don't. If we project a feeling down look then people think we are feeble and out of it. We can't win. However, how we sound most definitely affects professionals and consultants in the way they interact with us. We MUST always strive to sustain a positive projection when communicating. It's probably okay to let the guard down with family and close friends. They know the real you.
A few weeks ago Rheumy rang me, he said I sounded exhausted, I didn`t realise it, because had felt like it for so long....so we can`t disguise it....
Last time I spoke to my Rheumy on the phone, I did my usual thing of making light of everything. Bones showing wear and tear? Well, I am 78 years old, that's bound to happen. Although in fact I'm only 25 (titter). And so on . . . . Then I realised that I'd only met this person face to face once, and she hadn't a clue about me at all, but there I was presenting a very positive "nothing wrong with me" face/voice to her. In the following days I felt very down, but of course this hadn't been conveyed to the Rheumy. I phoned my GP, and didn't put on the "everything's fine" attitude, and ended up blubbing all the time, which is exactly how I really feel. I believe the message got across.
I think there is a misunderstanding in what I am trying to convey. I am suggesting that the tone and positivity in the voice conveys an awareness of self and condition. This translates into whether people see us as able and "relevant" or feeble and therefore "past it" I am not suggesting we project ourselves as OK. By having an authoritative tone and not sounding feeble we are taken more seriously by professionals and others. This then permits us to inform them of how we truly are. They are more likely to take us seriously. You must still self-advocate, but the response will be better if you sound serious and focused rather than despairing. I know it is hard but I think it is key to getting them to understand our true state.
Yes, no point in pretending.....good the message got across....hope things ease for you soon....
It is the same with the way we move. It can be tempting on a bad day, to shuffle along, bent over. Consciously making the effort with your posture makes you feel and look better. Says the woman who fell into the bath on the way to the loo two nights ago. Shaken but not hurt.
Very glad that you are not stirred. Rest easy. ❤️🌺xx
very James Bond. would make a funny sketch but not so funny doing it. Poor you SJ. I'm getting wobblier by the day. It's all to do with this muscle atrophy. Down to 16.5mg and hoping to go to 15 soon. It's still a high dose and don't know what is a dose that allows me to rebuild muscle. My balance has also gone south with this severe pred. induced myopathy.
Are you sure it's the myopathy re the balance? Both GCA and steroids can affect ears and balance
Not certain 100% but it's very significant and I have had it since I've noticed my atrophy. I think I am unlucky in that the wastage is very severe and I'm just one of those I suspect. It could be the GCA as well and I have an open mind. the balance is a different issue to strength and this is one factor that is highlighted in myopathy. I'm just concerned that I have highlighted this wastage from month 3 of my diagnosis and if myopathy which the GP could have considered there are certain measures that could have been taken then to counter it. It's been known of since the 50's so not exactly new science.
Quite - and those measures are mentioned as recommendations in some guidelines.
Very relevant to the survey I've posted
Oh dear, I know that feeling well......I now went and posted a letter a few yards down the road....swaying about, I`m sure I looked drunk.....😏
I think most of us can relate to your feelings most of the time, especially right now when our emotions are all over the place … and being on Pred heightens them too don’t you think? 🥲
Yes, I do....have had radio on lots of the time, the songs are lovely but very sad, just heard one that really affected me and realised it was a new song that came out when my mother died....many years ago, hadn`t heard it for a long time....but still.....
I have Classic fm on all day anyway, not only now, and I find it therapeutic, but at the moment it’s highly charged with very evocative stuff and makes me quite emotional, and Mr Pred I know is being very weighty on my system! 🥲 I understand ….
Sheffield Jane, what are you up to. First you get Covid and then you fall into the bath 👀. I do hope you recover from all this !
I have discovered that the dizziness might be related to Covid, an after effect. When will this end?!
the consultant at my eye clinic amused me when she said I looked fit and healthy but.a little wobbly.
It's a bit of a damned if we do and damned if we don't situation isn't it! Those nearest me quickly got heartily sick of hearing about me feeling unwell and less capable, so I don't mention it anymore, but when I go to the doctor I tend to do the same thing and try and appear bright and breezy, thinking that there's not much they can actually do to make me feel better – I just have to wait for the PMR/GCA to run its course and do the best I can in the meantime. But the whole "I'm doing OK / You don't look sick" charade is exhausting.
I've definitely noticed too that I'm not the same person I was prior to PMR and GCA. Apart from the obvious physical changes, I feel I've lost a lot of confidence in myself and my abilities to just get on with life and I am not on such sure ground in thinking of myself as an always "glass half-full" person these days.
So I'm very aware I need to try to be kinder to myself. It would appear amongst the other things PMR and GCA teach us, that tolerance and compassion for oneself and all the changes that happen are really, really important.
An aside: I suspect that like any part of the body that has muscles, the vocal chords are affected in some way by the autoimmune processes of PMR/GCA, so it's not so surprising that the voice might be affected.
And because the mind and body are so intimately connected, it's also not so surprising that how we feel mentally, emotionally and physically are all intertwined.
Totally agree but we must project the image we want people to see not the one that this condition dictates. Otherwise we are in the "do they take sugar" category.
Sorry, not sure what you mean by "do they take sugar" category? Is that an English thing us Aussies have forgotten about…? 😜
As someone on the autism spectrum, I'm all too familiar with projecting an image that people expect to see. PMR/GCA has just added to it in my case.
When people talk above and about you to a friend with you, usually a bit younger. Rather than talk to you they feel that you won't understand being feeble or maybe mentally impaired due to old age. Instead of just asking you if you want sugar in your tea or whatever. I saw it in hospital with my father in law. They started to talk to me about what he wanted and needed as if he wasn't there or couldn't understand. I quickly informed them loudly and firmly so he heard that until recently, despite his age, he had been running his business and was more than capable of managing them so kindly address any comments, opinions and observations on HIS state to him personally NOT me or anyone else.
It is a very common experience for disabled persons who have no problem other than their physical disability which confines them to a wheelchair. Their carer is asked the questions - not them. And inevitably, over the top of their head ...
prednisone has affected my voice, nog by choice, i answer the phone, and voice comes out as a croak, nothing i can do about that!
I too get that but if you try and clear the throat and then think in an assertive way before replying it helps to project a more forceful voice. It's like anything in life. You now have to work consciously to project the right voice. Just another adjustment but worth the effort. It no longer happens automatically like before, you have to make it .
Yes indeed, I can identify with this so I always seem to go overboard when talking to folk who know I have PMR. I talk a bit more, walk quickly and remain upright (like, shoulders back!), remain active and try not to be over sensitive about things (difficult sometimes!).
There are good days and better days. Many days I'm wobbly and a little off balance. My voice is always projected as positive (because I answer phones for a living), although sometimes a little gravelly. I chalk that up to seasonal allergies. Fortunately at 72, I still have a young voice. I get up in the morning happy because I can now do so without much pain or stiffness. Even when I was really bad, I got up, got dressed, put a little makeup on. The better you look, the better you feel. We're all on some kind of meds and I just had to up the Pred a notch because there are about 6 flus going around my neck of the woods and I think my system has been fighting one of them. The upper arm and neck pain returned. At least my energy level is elevated. LOL. It's very difficult to continually project a positive attitude, but a lot of the negativity comes from the words we speak and the thoughts we think, not so much the way we talk. All the best to you my friend.
sounds like you have it taped. Not all of us are quite so professional. It's amazing how many high end and driven people are on here trying to cope with something that is so far outside their lifetime of managing situations. No wonder we feel helpless and despairing at times. You just have to remember the person you were before and convey that in how you address people or a situation.
Not all. Farthest thing from "high end and driven" if that's what you're suggesting. I'm 72 and come from a lifetime of physical abuse from the time I was 19 until 59 (and before that at home). Maybe that's how I've learned to "manage situations". Working in the public with blackened eyes definitly gives one a different perspective on life. I'm not bragging about coping mechanisms, because PMR kicked my azz for 6 months before I was diagnosed in Jan. 2022. There was a lot of crying in the shower and still is. I HAVE to work and part of that work is talking to the customers, even on those crappy days. I work remotely for a call centre. Some days my voice cracks. The "person I was before" had learned the power of positivity maybe, in order to survive? This is an autoimmune disease we're dealing with, but at the very least, it's not life threatening and can go into remission. When I tell folks I have PMR most don't even know what it is. Sorry if I'm taking your reply in the way it was not intended.
Dear lady. you are entitled to reply in any way you please. I am lost in admiration in how you have managed to not only survive those years but rise above it to become who you are. You are most certainly a driven person and if you stop to consider what else you might have achieved if not for the abuse you have suffered I doubt many would have exceeded you. Exemplar.
Yeah, the very first morning after starting my 6- MG PRED for GCA, I woke up hoarse -- and 3 1/2 weeks later it's still the same. I sound like a 100 year-old man who's on his last legs. I find myself apologizing to folks when I talk to them on the phone, saying "sorry about my voice -- I'm on medication." The PRED also had an immediate affect on my vision, a bit blurry, which I understand will clear-up as I taper -- and also an immediate cardboard mouth. What a journey!
agreed. what a journey.
sorry Dad2Cue! I was advising myself really.
A Good relationship with transparency and honesty is an effective part of the therapeutic process.
yes D2C. some numbness mostly in the outer area of thighs not quads. Also feet. Trouble is I've only been taking pred for 15 months.
I'm not ignoring it but trying to understand it. Without a clear picture of associated symptoms and knowing how they are attributable it's hard to explain. Yes I had a really bad crash and the head scan was cursory only looking for a bleed. I have had one more recently but can't say how extensive it was. So much else was damaged or crushed that it was the least of my concerns at the time. Broken bones were healed in 4 weeks and I was back on the bike. 2 months later I was in training again. that was Nov. 2017age 66
I have come late to this thread and I have to agree with many of you. PMR/GCA has aged me very quickly. I’m not sure of the cause and effect relationship - but I know I look, sound and even think ‘older’ than I did a year ago. Sometimes, as cycli suggests, I can make a big effort to counteract this = but it’s exhausting and I’m never sure whether or when it’s the right thing to do.
I can only hope that if and when this illness goes into remission, I may recover some energy and vigour - but I’m making no assumptions at present. Meanwhile I just do what I can, as well as I can, and hope for the best xx
That's all you can Nextone. Just try. If it makes you feel more positive or healthier or happier then do it. If it is needed then do it. I have reached the point where I am solely concentrating on reduction and moderating my activity to enhance the reduction by not doing anything to overstretch my reserves. Hopefully going down to 15mg in a day or so.
Thanks Dad2Cue 😊
You’re right, I am often considered ‘complex’. I’ve had helpful conversations with cardiologists and neurologists, but for some reason, not with rheumatologists……why is that, do you think? 🤷♀️
you are entitled to understand what you are able to. others are not entitled to withold what they know.
Wow, that’s wonderful progress cycli 😊x
Like you I am concentrating more on resting and tapering - bit depressing but worth it in the long run, I hope. My hubby’s done to Greece with friends for ten days, and I find myself simply happy he’s able to enjoy it, while I ride things out here…..I know there’s no way I could clamber over historic sites etc so why stress about it?
All the best xx
to us both. I would be the same. It is tedious but inevitable. Just enjoy what you can and don't fret over what you can't. xx
I had my diagnosis changed from PMR to fibro, but I am still hiding on this forum as I find a lot of the symptoms similar, and I did spend 2 years on pred 🙄 Hope no one minds! On a bad day, my voice seems to 'run out', not because I run out of breath, but because I don't have the energy. I start a sentence, then my voice runs out and I am left mouthing the end of the sentence (like Cissy and Ada over the fence 🤣 I used to love Les Dawson 🤭) My husband says he can tell in an instant how I am feeling each day as he says my face is like this 😖 rather than like this 😃 I think I am fine when walking, but then my brain seems to go a bit quicker than my legs. I had flip-flops on today (bad, I know) and I turned my body, but my legs didn't follow and I fell off the side of my flip-flop and it snapped. Driving home, I found out how hard it is to dip the clutch with a bare foot 😳
stay as long as you like 😊… and yes Les Dawson was brilliant I agree. My sister often used to drive in bare feet, never knew how she did it.
I’ve never got on with flip flops 🩴….
I'd thought it was illegal? Can't imagine changing gear in bare feet personally and apparently "you could be charged with driving without due care and attention if your lack of shoes causes you to drive erratically or you are involved in an accident."
Yes it probably is now...most things seem to be , including flip flops, and long floaty dresses, wide bottom trousers... according to last version of Highway Code!
nanny state
Well fortunately I don't usually drive in them but I had a frantic call from my daughter with the dreaded 'monthlies' so I rushed out to get her as she usually has a bit of a faint, and fortunately school is just less than a mile away!
They're by the back door to put on when going to the garage or the bin 🩴🩴
You have lost some of the fast twitch muscles and the neuromuscular response is affected by the medication so your brain sends a signal but the muscles respond slower than the brain is normally accustomed, so your limbs don't move in sync. You have to wait fractionally until it is in the correct position.
That's a brill description. I fell out of the front door a while back. I opened it, went to lift my leg to step out, but it didn't lift and I just fell out onto the floor. It was 1am so everyone else was in bed. I'd waited up to put 18th birthday banners on the windows for my son. They were put up on adrenaline!
Yes. Pred takes the fast twitch first. This affects our ability to respond with the speed we are normally used to. Thats why we stumble because the limb doesn't respond so fast.
That also happens in PMR - patients often complain about it. And definitely not because they are on pred.
the lack of oxygen debilitates the muscle by contracting it . Pred actually acts on the muscle to reduce its mass. Do we know that PMR actually affects the nerve response in the same way that pred does? If so then the jury is out as to the cause. Either way fast twitch is affected first and the response is compromised.
I should also add that playing devils advocate on the balance between the two causes is understandable but when suffering from PMR and GCA before being on pred. I didn't lose any muscle mass and still had great strength. Admittedly I couldn't get around much and was in pain because of the way the conditions were affecting the muscles. As soon as pred. was in the picture I could see the wastage and it was rapid. The weakening became pronounced. The stumbling and ability to manipulate objects was impaired due to the message not being conveyed to the muscle quickly enough and the limbs response accordingly. This in my opinion points significantly to pred rather than PMR. Too little is made of this effect and it is overlooked too often.
Muscle wastage is one thing - the effect on the fast twitch fibres may be another. Just saying it isn;t necessarily that clearcut.
according to the studies on pred induced myopathy it is a very significant observation. In my case the deterioration of response reflex was never there when I had pmr and gca for months and probably years before pred. It was only when taking pred that these responses became obvious
For Bridge31
don't understand?
SeaCat was trying to link your post to another member - but it’s sorted now….
Thanks DL. understand. It was quite a good thread. Off to MRI today in Northallerton to investigate muscle state in legs and hips. Trying to understand why I have lost so much muscle so quickly. Don't know how they will react to the cellulitis.
Good luck
Good session. Now waiting results. Probably be updated by Rheumatologist on 28th in James Cooke. He asked for the MRI. Knackered after drive but ok. Legs don't look good with the cellulitis but can't be helped. Hoping antibiotics do their job.
Fingers crossed for you please keep us updated.
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