What are your collective thoughts on bladder weakness in relation to everything else we cope with having PMR? I think it’s a muscle like other things in our bodies. The brain is a muscle which if you don’t use it it becomes lazy too. When your not on Pred that is. Fact or fiction?
Muscle Weakness and Pred: What are your collective... - PMRGCAuk
Muscle Weakness and Pred
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Estellemac
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My own bladder is screaming out ‘fact’ ...mist dash ...you know where....toodle loo....
I would really like to know this also. I've only been recently diagnosed but have noticed that at random times throughout the day, as if my bladder could give way. It's a strange little spasm, but I'm afraid of what it means.
I do find if I gotta go then it's now not in a minute not sure if that's age too .
I think I'm still too young (63) for my bladder weakness to be an age thing. And I've never had a hint of a bladder problem until the last 2 months. I'm basing this age thing on what I've heard from the elderly. Not sure. 🤔 I think I discover something new going on with me almost everyday.
It’s an interesting journey. I’m 64. I am hoping there’s nowt else to pop up and surprise me.
I'd put more credence on the nothing until recently than age! There are pretty young women with bladder problems.
I'm trying muscle strengthening exercises (since last night), but is there anything else suggested especially for when I go out in public? I'm supposed to be going to a concert next weekend. Does anyone wear anything for these occasions?
There is a wide range of products from Tena (and no doubt other companies) in every chemist and most supermarkets. Which you need depends on the degree of the problem. I used their panty liners for years.
Thanks PMRpro. I haven't needed them yet, but I have a feeling I need to be prepared.
PMRproAmbassador
PMR can affect the bladder too - it is as you say a muscle. PMR can also cause irritable bladder symptoms. So can pred. Calcium supplements can irritate the bladder for some people. In the long term, the suppressed immune system may lead to UTIs. Incomplete emptying of the bladder (for various reasons) can also contribute to repeated UTIs. And being on pred may suppress the symptoms of cystitis for whatever reason until they are quite advanced/severe.
I've been lucky not to get UTis. My problem is at night. Is because I don't sleep deeply or because I have vivid dreams? The dreams always wake me up to go to the toilet. Of course there's age, two difficult births, hysterectomy and a prolapse. But it's only got this bad in the last three years. Up every 1-2 hours each night. The clinic do t seem to think it's related. I drink the minimal 2ltrs the day and stop at 8pm. Just does my head in.
I know of others with similar stories. It would finish me - once a night is a bad night!
I’m up in the night for the same reason @ least twice!
I used to get up once a night before PMR. Now it can be any where between 2-4 times. I don't know if it is also promoted by the time of day that I drink water or even what I eat. I am trying to remind myself to drink as much as I can before 2p.m. and then little after that, hoping it might help with the problem.
That is my experience as well! Between getting up st 2am to take my pred, followed by trips to the bathroom over 1.5 hours or so after that, I’m not getting a restful sleep. My OH and I take turns getting up with the pets in the morning and there’s times I pleaded with him to “take my turn” (which he does, letting me sleep in). I also take half a blood pressure pill each day that has a diuretic.
I’m wondering if the frequent urination will lessen as the pred dose is lowered.
Well I have only been down as far as 5mg back to 10 now and it wasn’t different then. But I might not have done it long enough only a month.
O the times I have only just made it
My Son presented me with Tena Lady last week and said it was the most embarrassing purchase he ever made.
Most Mums get flowers .
We had been discussing a trip to London and I was worried about getting to the toilet in time .
Normally only happens at home
I was putting it down to my age
So happy to hear I'm not the only one
This was first muscle to go, I told the Rheumatologist and she said it was common. I just live with it, pelvic floor exercises and weight loss helps
🥂🥂
I think it the weight too. Lying in bed flab round my middle must put pressure on it. I loose 1/2 to 1lb a week the eat something daft and back on it goes. Physician heal thyself as the saying goes. But it a constant struggle.
My totally unscientific observation leads me to believe that there is a definite negative impact.
You sound very strict Estellemac - enough to make me do my pelvic floor exercises! 😁
Had an operation for a prolapse so they nipped and tucked it back in to a new one.
Hi E,
There is an impact for one or all the reasons others have talked about above.
Unfortunately your bladder muscles , like your pelvic floor are some of those essential muscles we aren't taught to try to exercise from an early age , we only try it if we have a problem , an operation or around pregnancy and we give up soon after. So the muscle is already not strong by the time the Pred steps in.
So even now , starting pelvic floor exercises and really squeezing and holding in the muscle area of the bladder as though trying to prevent a wee can start helping , and at least you can do them anywhere without people seeing .
My Auntie used to do it at the bus stop on the way to work .
The idea really tickled me . A very elegant little lady , I pictured her standing there between a man in a boiler suit and another with briefcase , umbrella and bowler hat , oblivious as she pumped away at her pelvic floor!
The Steroid effect on muscles is important too , and part of the cause of repeated bladder infections and UTIs . Your muscles are made of connective tissues , and so are the tubes of the bladder and kidneys. Steroids have an effect on our ability to produce collagen because it affects collagen receptors.
Collagen is important in muscles and connective tubes so as time goes on tubes stretch , get tiny folds and the weaker muscles don't hold the tubes as straight.
In combination, we feel the need to pass water more , and urine does not completely clear from the tubes which means if you don't drink alot to keep clearing your bladder , bacteria have more ability to reproduce and UTIs and bladder infections increase.
Eating more foods that have collagen , proteins like fish and eggs help. Also eating more Vitamin A . Go to work on an egg was actually a healthy thing to do all along!
You have lots of fluids already , green tea and mineral water help as drink choices, with antioxidants and replenishing salts for the kidneys. Cranberry juice can be good for kidney and bladder function too. Unfortunately it can mean more toilet runs at night until those pumping exercises have effect and we get the timing right about when to stop the cuppas.
On the upside , the wobble for a wee has become one of my regular forms of exercise!
Hugs , Bee xx
Good to think I'm burning calories at night. I have had meds from the Doctor but nothing works. Next appointment 13th.
Until then start pumping that pelvic floor now!
Just think , with wobbles for a wee , and invisible exercises on your pelvic floor , it's like we are becoming as fit as a bunch of gym bunnies!!!
Hugs , Bee x
Oh yes! I also have had a couple of bouts of cystitis in the last two years. Always up in the night once or twice,...I am half an hours drive to my nearest town,after parking and before I shop the first ( rushed) visit is always to the loo!! Happy Days!
Sorry to be picky, and I don't wish to offend, but in case others don't know...... the brain is not a muscle. Yes use it or you'll lose it correct, but that is because it is possible to form new neural connections by doing brain training type exercises. Brain tissue and muscle tissue are different.
I think it just a traditional saying we use. No offence taken it’s all good information.
Did any call a brain a muscle except in its figurative sense ? If so , I am sure they meant no offence and will be grateful for your information, I Am ! I love a good fact me ! Thanks x
I had an op for prolapse and one of the pieces of advice was that it’s useful to ‘sit on it’ as long as possible. In that way the bladder is ‘trained’ to hold more before signalling the need to be emptied. Going to the loo too often sets up the pattern of emptying the bladder before need. You know how we all go to the loo before going out - not necessarily the best thing but hard to give up! 😃
Mines at night mainly. I dream about needing to find a toilet in a strange place.!!! Weird.
Look at my answer to Thelma , you will be dreaming of that tonight , but great advice from her I forgot . xx
Great advice Thelma , although I am laughing my bed socks off now thinking of the phrase " bladder training" , just imagining it like a little cartoon character in a leotard with sweat band carrying weights!!
Although it's true , the bladder and pelvic floor both need intensive training ( or retraining) to allow us peace of mind , stop infections but also get the fluids we need each day without having to give up drinking too early in the day , as this is also not good for you.
Thanks so much for reminding me of those bladder exercises and tips about only going to the toilet when you have to , not just in case.
I remember being told that as well as the pelvic floor exercises after my hysterectomy and they do work.
Hugs , Bee xx
You’ve reminded me to do those pelvic floor exercises!
Another term for bladder training is 'bladder drill'. When I first heard it, I thought it was some fancy surgical procedure to cure the problem! 
Ask your doctor if they can refer you to someone for it - maybe a specialist Physio? (or possibly Dr Google will have details!)
See you next week - Tenas in situ?!
And 20s he he he. I have mapped out the toilets on my phone GPS.
I know I always go on about Pilates if you are able. But it works on the core and pelvic floor muscles and is a big help. However, coughing and big sneezes still squeeze a bit of wee out. I think that happens to most women. I had to buy panty liners when I had a really bad cold.
Exercise and weight loss are a key factor. Just a bit inactive with Osteoarthritis and sometimes the PMR.
Luckily pelvic floor and bladder training don't take too much activity or affect your PMR in a bad way , in fact it helps!
French women are taught by their Mothers to to do them from childhood , and they increase the exercises before and after childbirth. Here's a fact for you apparently you have done an epic life fail as a French Lady if you are not back at your original size and weight 8 weeks after childbirth, 8 weeks !!!
They have special free exercise classes and are put through virtual army style training to do it. I don't think I had thought about wether my body could look like anything than a feeding station by then , xx
My daughter in law is French. Size 8-10? When she went in to labour she got up packed what she needed got the eldest childs school lunch and bag ready called the minder then got my son up with a nice fresh coffee and said he can now drive her to hospital. The following day when She came home they went on to the heath where she played football with her 4 year old and I watched the baby. Two weeks later back in jeans no stretch marks and no birth side effects. No baby fat nowt. I think she’s an Alien that’s why she talks another language too.
It's the way of life there , don't allow little things like having a baby get in the way of your Chic!
Wish I had got a French Woman's Pregnancy training now , all we got told was pelvic floor after the event and don't get distressed when you put on your best clothes and they get covered in baby sick!
Hugs xxxx
I wonderful the French have a better recovery exercise regime for PMR too ?
I will get my old French vocab book out today and start looking , you've intrigued me now. xxx
Yes I have to rush to the loo and often do the little “ wiggle” as I get there. I also try to go before I go out and before I come back from somewhere so I’m not desperate at any time. To have to go every one to two hours a night must be very wearing. Have you tried finishing your daily drinks a bit earlier. I wonder if that would make a difference? X
Tried all sorts over 18 months. The nurse said your bladder takes 3 hours to fill so if your going too much it could be your witdehydrated as your bladder thinks it needs to empty. I could have my last drink at 8pm. Then she said I wasn't emptying it properly and I can't be drinking enough fluid for normal bladder health. I said I drink when I'm thirsty but do drink tea, coffees or skinny chocolate at any time plus water at each meal. Had 3 types of tablets to stop the urge to go to no avail. Probably have to live with it. Might go private if nowt happens next week I have enough to deal with having this.
If you have irritation the bladder will signal it needs to be emptied. If she's saying that she should have been getting you to do a fluid balance - to establish how much you really are drinking, not just snatching comments out of thin air.
I did a chart input and put out over 12 weeks. 3 appointments making changes as suggested. The comments were based on these findings. Some of what she said made sense 18 months ago.
Don't know if it will help but my bladder nurse gave me these instructions , never drink anything with caffeine in and never anything fizzy , oh and try not to have anything to drink later than 8.30at night !
I have gone on to decaf. Sometimes I think it's the veg and very low carb nowt to soak up the fluids
My bladder weakness seems to be worse when walking, especially downhill. Not so bad at night when I'm laying down. Just bought some Innovo shorts with the Tens pads in, see if that helps, they say it takes 12 weeks at 30 mins a day for 5 days a week. Should have bought shares in Tena!
Just returned from holiday, saw the insides of a lot of Turkish and Greek toilets! The most distressing thing is I never quite make it and incontinence pads don't hold it all. Ended up going to the loo every hour and still spending 10 minutes cleaning the cubicle, I put it down the increased bladder problem to drinking alcohol, pelvic floor exercises don't work. If it continues will see the GP I find it more annoying than pmr. Both doctor and Rhuemy said it was nothing to do with my condition but it came on when I started with pmr so don't believe that.
Your GP should be referring you to urology - who know a bit more about how the waterworks function. The trouble with going so often is that it does tend to make the bladder even more unable to wait.
They are wrong - I told Sarah Mackie about bladder problems and PMR and she expressed surprise. But being Sarah she started asking patients - and, lo and behold, many patients do have bladder problems, more than would be coincidence. The same with foot and hand pain in PMR that so many doctors will try to say aren't related.
Interesting. I found this problem developed during the first year (W GCA), when I was v immobile and had v noticeable muscle weakness all over. Since then (into 3rd year now) the problem has been gradually improving as my general fitness is v gradually improving.
At this rate I'll be in great shape by the time I reach my eighties! Or maybe not? 
Fingers crossed.
Year 4 for me but I think I might see some change soon. I have a song for Parker about that. When I’m 64 by the Beatles? I’m still useful at the moment so not worrying yet.
• in reply toPMRpro
I agree. I'm in a downward spiral. Had a UTI before the hols, antibiotics sorted that but I wonder, nothing hurts but I feel the need to go constantly. If this continues will have to do something about it, if there is something to be done!
I found calcium supplements contributed to cystitis symptoms - especially if I'd had a day not drinking enough and that had caused more concentrated urine. I stopped taking them on days I expected not to drink much - travelling for example - and that helped. Then I changed the brand. Both helped.
• in reply toPMRpro
Yes could well be the answer, I was way out of my ordinary routine on holiday and eating far too much, taking pills randomly. The sunshine almost eliminated the aches and pains though.
Estellemac• in reply to
Mine at night was worse after my anaesthetic for my hip operation. I kept calling a nurse. They got an ultrasound after the 5th time in 4 hours and agreed my bladder was full again and got me a commode because I was emptying properly in the bed pan. After the 8th time I got a zimmer and hobbled 5 yards to the toilet. They said there was no UTI either. It’s got steadily worse since.
Presumably something acted as a diuretic - if the bladder is full the fluid is coming from somewhere.
They put me on fluids after the op it just went straight through I think.
Estellemac• in reply to
Used to live in Cyprus they only have septic tanks no sewage system and you can’t put paper in the toilets. I don’t get why they can’t put it in a bigger bucket with a lid or through an external hole in the wall though rather than anywhere around the toilet????
How disgusting - China and Korea had similar habits and I never saw any outside the bucket. There are areas here that sell different loo roll - suitable for septic tanks, the sort you need for caravan toilets as well.
Some rural homes must have septic tanks and need biodegradable. In my house in Cyprus we could flush paper and had the septic tank cleaned regularly. You never knew they had done it either no disgusting smells.
Quite few up mountains here! And yes, very high tech sludge gulping with no smell. They reserve that (the smell) for disposing of what they call gully - from the cow sheds on every farm - across their fields ...
• in reply toEstellemac
The hotel was ok, though I must say I often forgot and threw the paper down the toilet when in cafes. I think the toilets in new buildings in Cyprus more user friendly. I was told the reason for not putting paper down the loo was because the pipework was too narrow.
Estellemac• in reply to
I was there 35 years ago it must have improved since. And why wouldn’t pipes sizes be standard in holiday resorts?
Probably right though.
I have found this thread so interesting and comforting.
So I am not alone! Only had problems since the pred. Doing pelvic floor exercises and always take protection when going out.
And always checking where the nearest toilet is, just in Case!!
Thanks so much for airing this problem 🌹
I am 72 and still working part time. I use bladder leakage pads regularly. I don’t like surprises if I sneeze, cough, laugh or lift! I’d rather be safe than sorry!
• in reply toLanakay
Funnily enough I'm ok with doing those things, it's if I think about it I start to go, and going from a sitting to a standing position well gravity takes over. I have wondered if it's all in the mind.
Yes I think it is related. I never had problems with bladder problems before pmr and prednisone.
I have to wonder what is happening to the heart muscle???
Don’t panick Don’t Panick as they say in Dads Army. My heart gets loads of exercise carting 13st of lard around every day.
A kindred spirit!
"I have to wonder what is happening to the heart muscle ???"
Linny Hi
Thought the same thing, but I then remembered reading something regarding Prednisone and heart . I'll see if I can find the article..👍
I suffer dreadfully with getting up 4-5 times every night for the WC ...Like others, this has slowly developed over the past year since taking Prednisone ...it can't be a coincidence if most of us are suffering the same symptoms..
Next week I have an appointment with my rheumatologist I shall ask her what she thinks.
Because of getting up so many times at night I am so tired 😴 all the time. Quite a vicious circle.
I wonder if any of our gentlemen PMR 'victims' have the same problem.
I go in and out of symptoms like a revolving door. Pain can come on quickly and then leave just as fast. Some days I have complete bladder control and other days I don't. Some days my hips are so stiff I can hardly walk, other days not so bad. Some days I see clearly and forget to put on my glasses. Other days even with glasses I can't see clearly.
It is a wonder I haven't lost my mind.
Sure must affect it in some way, so does pred, I pee a lot!! 💦
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