Hello, I had GCA not PMR but my pelvic floor became very weak once my muscles became generally flaccid due to Pred and deconditioning. I ended up with a prolapse and my bowels and bladder were either too free or not free enough. I was walking my dogs an hour every day so wasn’t totally unfit but…Coincidentally I also got Achilles tendonitis which took me to a podiatrist and at the same time I was lucky enough to be pointed to a pelvic specialist physio by my GP. Both practitioners independently reported that my low back and hip girdle muscles were rubbish (even from all that walking!) and when asked to perform certain exercises I was shocked because I had no idea how weak I was. The physio said that because my other muscles were so slack my pelvic floor was having to do all the work holding up my organs.
From my nursing days I know that incontinence is caused by different things and you really need to find out what and if you are even emptying your bladder properly each time. Please go to your GP.
Weight is a big factor and I can attest to that because although I am not overweight, if I even carry a couple of pounds extra round my middle (where it likes to be these days) I notice my pelvic floor is more stressed. I suspect the organ fat one cannot see is adding to the pelvic load.
I have to do my special exercises daily as even a week off them I notice slipping the wrong way. These exercises are both the standard pelvic floor exercises (easy to look up) but also hip and pelvis. With these sorted, my other aches and pains have sorted themselves out because it was affecting my posture.
On Pred it seems to be the only way to lose weight is to cut out all the white and beige carbs and go easy on fruit. Oils are ok and protein but no potato, rice, pasta, bread, flours etc. I did this form the start of GCA on 60mg and didn’t gain extra fat at all and many here have done the same. The drastic measures are needed because Pred causes you to release glucose into the blood stream from the liver which then makes you produce insulin which then makes you put on fat. You also risk eventual diabetes. Once your blood sugars are under control you don’t feel as ravenous in bursts.
A really informative reply to Roomsonfire, Snazzy.You are so knowledgable and present your information in a way that's easily understood. I'm sure that others will find this very useful.👏👏
Thank you very much for sharing your experiences and your advice on investigation and treatment- I wasn’t aware Prednisolone / PMR would affect my Pelvic floor ! I didn’t have serious Urine / Bowel urgency / leakage before PMR developed - I’m drinking plenty of Fluids , Weak Tea and Water , No pain on passing Urine - I think losing the weight and exercises might be necessary- Being unwell , with Shingles and Covid too - I’ve become very Unfit - Walking just 15 minutes is tiring for me - Best wishes
I was forgetting that Pred was like a laxative for me and that got better with dose reducing. I do think we underestimate too the effect of getting unfit, especially as we get older. Go carefully because your ligaments are also likely to be a bit less tolerant of a fitness drive while we are full of resolve and embark on a ‘new me’ surge. I made the mistake of launching hard into pelvic floor exercises only to find next day I was walking like a zombie feeling like my pelvic ligaments were made of tooth picks. Build up slowly.
🥰 Thank you Snazzy , I have been less active since being unwell following the Covid Vaccine in March 2021 , For me just walking around the Village for 15 minutes is extra Exercise - Housework , Laundry , Meal prep. As you know all requires Energy , Specifically though I have not paid any attention to maintaining Muscles in my Pelvis , I’ll wake them up ! As this Issue isn’t really ok at 62 -
I have to say though, that as a nurse and having to perform cervical smears I was forever handing out pelvic floor exercise sheets to the 30-50’s because things weren’t great then but they were usually none the wiser at that point. So, don’t chastise yourself too much, it’s a common issue. All three covid vaccines didn’t do me well either with each one taking longer to recover from. The third one took three months but long covid took 7 months and my memory hadn’t been the same since.
I try to make my daily chores more of an exercise, especially doing proper posture. I also have banned the use of the downstairs toilet so I used the stairs more.
Thanks for your Kindness Snazzy , I was a Nurse too , Mental Health , Adolescents - and we encouraged keeping both Knees together - No Pregnancy = Strong Pelvic Floor 😊 Personally Too uncomfortable in any position for anything these days 😂 Best wishes -
I so identify with this RoomsonFire ( love the name!)
I used to walk twice around our village in half an hour, now as you say I’m exhausted after 15 minutes and I haven’t gone a quarter as far!
Went on holiday to a mobile home in the New Forest last week and was truly shocked at my reduced level of fitness. I’ve got everything so well organised at home, it was a challenge even to take the rubbish to a bin 50 yards away on the site 😳
I’ve come back determined to do something about it, but am aware I mustn’t overdo things.
🙏 Thanks for sharing NOP 💐 Our village doesn’t have a Bus service either .. so as it’s 2 miles into Town , I’m a bit Pot Bound ! Before This Pesky PMR I could Walk that far - Also with our Muscle Weakness uneven ground feels like it Stresses my Balance too ? But like you said - on realising Unwelcome changes have happened we can do what’s possible to halt the Slide and maintain Strength 👏 Good Luck
Hi there, could I just chip in - my very first post, 18 months or so ago, was to ask if anyone else had the terrible sudden urinary incontinence that had turned itself on like a tap with me, within two weeks of starting Pred. (60mg at that time). It seemed that no one had, not quite like this - lots of people said they had to go more frequently, or had a sudden urge - the point about mine is that there is NO sudden urge - I either go to the loo normally, or leak continuously in a polite, silent fashion, hardly aware it's happening. I saw a specialist privately once, who kindly added me to his NHS list (the GP and Rheumy consultant had never heard of such a thing, the Rheumy virtually said there was no connection). Several months on, the consultant said there was no problem with any of my waterworks, my bladder, pelvic floor was fine, etc etc. He finally seemed to agree with me that as steroids weaken the muscles, it's not impossible that they also weaken the muscles supporting the bladder as well. The weird thing in my case is that I can't go without Tena pads during the day, but at night don't need them - I just get up in the night for a pee as usual. (So, vertical position is obviously a factor). Current situation is that on 5 mgs Pred, as at the moment, I have reduced from three pads daily to two, but the problem is still there. Like a tap that turns on and off all day, alongside normal urges to go to the loo. I suppose the purpose of his long ramble is to say you're not alone - and yes, do the pelvic floor exercises, but this may also be something that, as I've found, you can't entirely control while on Pred. Good luck x
💐 Thank you for sharing Frewen , I do Empathise with your experience - I think Urine production is reduced when we Sleep through the Night - And maybe lying down the Bladder isn’t squashed ? I think the TENA solution is Ok - we don’t Smell bad and we are more Comfy and Confident - so until we are recovered from PMR I guess we should use whatever we need - to carry on as Normally as we can 🙏Best wishes 💐
I am in the same situation as you. Very pleased to see I am not alone. I have terrible bowel problems and pain passing urine. All tests say nothing is wrong. I too have had covid in the last month and now shingles. Have had the jab. Got antivirals in time to head the worst off but still in a lot pain. Have reduced to 3mg of pred. Been asleep in bed all day today
🙏 Sorry you are ailing Joan dear 💐 If my appt next week with my Rhuemy offers me any Advice ,for managing these Chronic problems we share that might to helpful to you too I will of course Post it - Best wishes -
Much more helpful than a GP has ever explained. Usually just sent down the route of unpleasant tests and or drugs, then dropped. I wonder if this also explains the constant pain I experience associated with bowel and bladder ( variable in intensity) but not showing any discernible pathology. I wonder if my very low priority ( to my GP) referral to Gynaecology will highlight this important diagnostic possibility? I maybe post menopausal but multiple pregnancies may have taken their toll also.Thanks as ever SnazzyD.
Currently a sharp boil like pain in my right side spreading across the lower abdomen when I eat accompanied by dizziness, nausea sometimes. Lansoprazole seems to give me pain in the lower stomach, it feels like a punch, new symptom. Last night I had burning pain in the gall bladder area. Gaviscon helps a bit and very small portions of bland food. Loose bowel movements 5 times a day for days then feel blocked for a while. Symptoms of cystitis. Can be urgent. Weight loss. Nothing found in a Colonoscopy. Worse for gravity, better for lying flat. Ovarian cyst has been mooted. No infection. Feel generally unwell. Sleeping a lot. GP not accessible. Rheumatologist looking at Cardiologist report about dilated ascending artery ( aortic). On 6 mgs Pred no Tocilizumab. Sorry for the repetition. Still stuck here with it every day.
Don’t apologise. As per usual, lots of questions. What do you mean GP is inaccessible? Has anyone taken a direct interest? Have you ever had a simple ultrasound of the abdomen? Have you tried taking an alternative to Lansoprazole?
Apparently there are 9 cases of Covid in my GP’s surgery (staff) so unless you are at deaths door, there is no service. I have had an external and internal abdominal scan which showed nothing of particular interest but the GP was prepared to make a Gynaecologist referral. I am in the waiting system (for Gynaecology) but not regarded urgently. My Colonoscopy showed just normal wear and tear for my age. Poo tests show no bacterial infection or blood . Urine tests show minute traces of blood and no infection at present. My symptoms ( own research) seem to fit for ulcerative colitis, IBS and or diverticulitis in many respects. The pain is much worse at the end of the day. I also have a dry mouth and an unquenchable thirst - literally always drinking water. The GP ( any of them) takes a lead on this and has initiated the tests. I am apparently not yet diabetic. My Endocrinologist wants to see me when I reach 5 mgs with a view to getting me off Steroids - his initiative. I no longer have Tocilizumab. This has been going on for at least 4 months and started off with a dramatically painful version of all symptoms - painful to walk - had to sit down gingerly.This is useful revision for me actually. Thanks for asking. I take Gaviscon, paracetamol and sometimes even Tramadol. Nothing helps much.
So it’s stab in the dark time while you wait. Have you tried removing gluten from your diet? It’s worth a try for at least a month in order to save time if it is suggested you try and it is quite amazing how it affects all of you if you do have a problem with it. You’d see ulcerative colitis on the colonoscopy but there’s microscopic colitis. Did they take a sample for microscopy? mayoclinic.org/diseases-con...
They took 4 biopsies. I am guessing they surely tested for that, microscopic colitis was my self diagnosis, initially. The Colonoscopy doctor suggested that the right groin pain might stem from my hip. However, it is about 4 inches from my hip bone, lower and definitely feels systemic and about my digestive and urinary function. My son is very sensitive to gluten so as a family we eat very little gluten, not none though, well I don’t have any now. Milk seems to soothe. This is good of you Snazzy.
Have you looked into ileocaecal valve dysfunction? Here are a couple of links but there are many and there are YouTube videos on self massage but I’d go carefully to start. The second link mentions bacterial overgrowth associated with it. specializedptms.com/faq/ile...
Thanks again Snazzy, the initial point of pain is exactly in the position of the ileum . It begs the question why Lansoprazole was pushed at me and a referral but no discussion of these possibilities ?
The idea seems to turn up mostly in websites for osteopathy, kinesiology, chiropody, radiology texts, most of which say it is often overlooked by doctors. Do you still have your appendix or had surgery there? I had issues for a few years with intermittent pain and upset gut before my appendix went ballistic. Grumbling appendix was one of those things that some doctors said didn’t exist whilst others said it did.
There are 4 members of my family who had a "grumbling appendix", including me. All of us had the problem in childhood - and there are doctors who will claim children don't get it!
The grumbling aspect was beautifully illustrated by my older daughter who had recurrent appendix symptoms for a few years and in the end the local Uni children's hospital sent her home with a diagnosis of abdominal migraine, DEFINITELY not appendix! Next morning she was as bad as ever and we went in the opposite direction to the much smaller regional hospital. There they decided it looked enough like appendix to remove it, next morning at the latest if it didn't go ballistic in the meantime. Histology of the "visually normal organ" they removed showed clear bands of previously inflamed tissue the full length of the appendix and the most recent was ulcerating and about to perforate. As it was, it was a simple recovery - might not have been if it had been left.
I do still have my appendix, this pain, at a very low level, has been going on for 3 or 4 years or maybe longer - no more than a niggle.. It is the accompanying lower abdominal pain and bowel and bladder symptoms that are more recent. The first time I was examined for it I was told that if it was my appendix, I would be screaming, as he pressed hard. It didn’t hurt much more.
Hi Jane sorry to read that you are having a hard time. Thought I would mention that I had a feeling of punch in lower stomach especially when I would lie down in bed at night. It went on for a couple of years. My G.P. said it was fibroids and to take Ibuprofen. However it was stomach ulcers made much worse with the ibuprofen ! Hope you get to the bottom of it Deb x
Break in gently; don’t want to feel like you’ve ridden a horse for three days! any chance of gentle Pilates for your lower back and hips, plus other bits?
If you go to a class - speak to the instructor and ALWAYS start at the low end, no trying to keep up with others. We old ladies in my Pilates class used to get a good laugh every so often when sporty young men joined us and you could SEE them thinking "can't be difficult if grannies can do it". Sometimes they didn't manage a second class as they hurt so much
A number of my strengthening exercises wer string or sitting. Of course pelvic floor exercises can be done anywhere, any time anyhow! All you have to do is smile sweetly if in public as you stare into the distance trying to work out which bits to clench! youtu.be/oeInGYVLf8I
If you look at this video and others from this lady, you’ll be able to see her others about exercises that don’t involve lying and also breathing for the pelvic floor.
I had urinary continence problems with PMR before pred - leaking and urgency. On pred I do sometimes have cystitis - sometimes due to a UTI, sometimes not, and have had urethral stretches (stretching the tube that takes urine from the bladder to the outside) which makes a BIG difference. I also realised that being on calcium supplements were causing the systitis at least some of the time - too much calcium leads to calcium grit forming in the urine, especially if you aren't drinking enough and the urine gets concentrated.
I also occasionally have bowel problems - can't really identify a cause although I can only use one form of magnesium supplement without developing very loose stools. However - are you on "stomach protection" medication? Did the bowel problems coincide with starting that? PPIs can cause quite severe GI problems - ironic when you think of why we are told to take them.
Thank you for your helpful and supportive reply , I cannot get a Drs appt for 2 Weeks Unfortunately, I’m taking Omeprazole and Ferrous Sulphate which could contribute to my loose Bowel problem maybe - But am eating more Veg less Carbs as directed - which may be too much Fibre for my system 😂 Thanks for sharing your own experience too - Best wishes
I'd say the omeprazole and ferrous sulphate was as likely as anything to blame,
Ferrous sulphate was dished out like sweeties in the UK when I had baby No 1 - I took about 3 doses! It was horrendous and I was houng and fit. By No 2 in Germany I was checked monthly for Hb and nothing given until it budged - I never became anaemic to need it.
If it were me I'd stop the ferrous sulphate - I did get the more expensive option in the UK and was fine so if you are worried ask the pharmacy to recommend something in the meantime. And ask them about other options to replace the omeprazole until you CAN see the GP. An H2 antagonist such as famotidine or cimetidine is worth trying and they are available OTC. And there is always Gaviscon.
I think more fibre gets a bad press - in your case the above is much more likely.
Thank you 🙏 I’m Vegetarian taking a Multi Vitamin mineral daily .. So yes I’m going to try a Ferrous Sulphate break and see if my Bowels are less loose without it - I was Anaemic in Blood testing - but I’m not currently - I’m making a Bullet point list of concerns to share in my Drs appt - Thank you 💐
If you have PMR (or any other autoimmune or chronic illness) there is a condition called the anaemia of chronic illness. The way to treat that is not always iron supplements - they have to do more than just look at your Hb level to decide what they should do, Ask about that too ...
Once when I was anaemic back in the day after blood loss Ferrous Sulphate went straight through me. I found Ferrous Fumarate much better but I think it was more expensive so not a first choice.
Omeprazole played merry hell with my intestines. Stop now if you don’t want details. It made me windy and bloated, then it made my stool too soft for the bowel to get a grip of so I wouldn’t be able to go so then it went too firm and large. A weak pelvic floor just made any effort like trying to fill a ship’s sails with my own puff.
🤣🤣 it a divel am leaking now but worst of it is poo like very very pale clay like sticky a lot of the time need to dig it out, sorry it’s messy as I have deviculitus also 🥺
Oh yes, rushing to the bathroom every half an hour..getting up in the night, sitting here thinking about it I will have to go!OH says I'm like our son's dogs that can't pass a tree without going!....but for me it's toilets!...has worsened these last six months.....Will look up exercises mentioned here....
I read about this medication and would welcome it. I was prescribed Regurin (Tropsium) ? a few years back. I stopped taking it though, not too sure why now. I certainly need some help for incontinence.
Hi Piglette, after yesterdays conversation and me mentioning Regurin (tropsium ) , I was going to the cinema early afternoon and having lunch before hand. My mind was working overtime at the thought of by bladder doing the same. Sitting in my bedside cabinet were three Regurin tablets, I took one impulsively. The good news is they work. I didn’t need the loo until after the film finished and then not desperately. It was so nice not to have to ‘go’ at the cinema. I now realise why I stopped taking them, dry mouth and tiredness.
I don’t know if anyone has mentioned “ Lady Leaks “ knickers. They are comfy and not bulky. There are a lot of period knickers online.
Men don’t have it much easier when you have an age related enlarged benign prostate. The prostate then constricts the urethra so get the urge to pass fluid because of incomplete bladder emptying. I’m on medication to impede an enzyme causing the prostate to grow. Coffee goes straight through me. But I love coffee.
I had the same problem recently. I have RA and Lupus, and I recently found out I’m a coeliac (through an endoscopy). Feels like a uti but isn’t? I was diagnosed with Interstitial Cystitis. Often found with people who have more than one autoimmune condition and in coeliacs. You may need to get referred to a urologist. Hope this helps.
I have been on Oxybutynin Hydrochloride for stress incontinence for several years now, absolute game changer . I also went to a v helpful session with a group of ladies to find out all about pelvic floor exercises. Very helpful. Having 3 kids in just over 3 years didn't help my pelvic floor ! My GP referred me to the pelvic floor specialist. May be worth enquiring about both ?
Hello Roomsonfire,Yes, yes and yes! I've just hung up 3 day's of washing - countless pairs of knickers! Pelvic floor exercises may help a bit? I do some every morning but not as often as I am meant to do which is 10 x 10 daily (pretty tough call I reckon).
It's just one of the joyful aspects of living with PMR. I am 5 years in, age 72 and relate totally to needing to go and then whoosh it's there! Not fun. Pred weakens our musles including our bladder muscles. All the best. Stay positive and count your blessings we don't live in Ukraine...........
Thank you Louisa 💐 Yes I’m fortunate to be Retired on a Nursing pension - If I had to try and Work with these problems it would be a lot worse ! The Tragedy of Ukraine it’s Diabolical 😢 - I’m trying to lose some weight and exercise those Lazy Muscles ! Best wishes to you
Many thanks RoomsonFire for bringing this subject forward and to SnazzyD for such a brilliant response. I feel sure you will have helped many readers, especially me.
Thank you Jane , I didn’t get to the Bathroom quick enough this Morning 😥 Wetting my Nightie ! I hadn’t Told my Husband about my Incontinence - but had to Today as I was putting Dettol into the Washing Machine - It feels a horribly Geriatric - but it’s a Support knowing Other Peeps are Battling the Issue too 🙏 Thank you
If you are washing fresh urine out of things you really don't need to bother with Dettol - urine is sterile unless you have a UTI so nothing to kill Just a good decent temperature wash is plenty with modern washing detergents. All the advertising has people paranoid about buying a load of unnecessary and expensive products - good for their profit margins and bad for our pockets ...
This was one of the things which I have had to get used to since PMR arrived nearly three years ago. It's a little like being 6 rather than 62 and when I need to go, it's urgent although I haven't yet actually had a spill. I also have gotten used to having to go twice daily for a no.2, whether both in the morning, or spaced out. I had put it down to ageing, but it might be connected with the reduction in muscle strength in general. For what it's worth, I have the feeling that there's a psychological element in it as I can have three pints of beer in a pub and still walk home before going to the loo whilst my companions are hopping to the Gents in succession. So I don't think there's a mechanical issue. Oh, the joys of PMR. Joseph
I must admit I thought prolapse when I saw your post. If you are interested there is an electronic pelvic floor exerciser Kegel8 - I use it alongside the usual exercises and it has certainly strengthened my pelvic floor kegel8.co.uk
Yes -thanks! I'm perfectly OK when away from home but in the house I have to distract my mind on the way to the loo, otherwise it's a leak. About to have hip replacement op and feel worried that I'll never make it to the loo on crutches. I've been doing pelvic floored exercises but probably not enough daily.
I am walking the dog 3 times/day. I am now at alternating 1mg and 2mg/day and now without bladder/urinary track problems, which I also had at higher dosages. I had to take regularly uricran or other similar medication to cure/prevent urinary track infections. I had never bowel problems.I am still wearing such modern menstruation slips, just to feel reassured. It's much better for me and the environmen than pads.
Hope you will find also a convenient way to deal with your problem. Oh, yes, I also do daily exercises for my blader. You will find them on the internet. Just keep going, moving is important and sunshine too.
I lost bladder control as soon as I had pmr, in a way it was the worst thing. Now 4 years on and down to 2 1/2 pred a day, things have improved. On another site for Over Sensitive Bladder, it listed drinks and food which irritated it. Tea, coffee, alcohol, fruit juices, chocolate, citrus fruits being the main ones I remember. I cut these out for a week and gradually reintroduced the food and drinks I like. I find that by drinking warm water in the mornings, having just 2 cups of tea during the day and 1 decaff coffee has helped enormously, I haven't had to bob behind a bush since. I have a prolapse so doing keegles is something I concentrate on which I think also helps. It's just first thing in the morning I get a 'whoosh' but I can cope with that.
No idea what others willsay/ have said but I don’t on’t think it’s anxiety - think it’s muscles! It does get better, as u gradually decrease pred over time but weakened muscles are a pred side effect and pelvic floor is no exception! Keep planning yr day with this in mind and do pelvic floor exercises and it will get better - but not quickly. Patience is - az always - a virtue, with gca/pmr/pred. Good luck, Carrie.
Thank you Carrie , I’ve bought some Tena Lady protection, Reluctantly, For days when I might not be close to my own Loo 😊 but will be trying the Pelvic Exercises too , I have had Anxiety about it - - this has reduced following lots of advice and explanation 🙏 Best wishes
I agree . Once I bit the bullet and bought tenas, I was so much more relaxed . Doing daily exercises is boring , but a must . Trying to stop and start during urinating , helps me more than exercising in front of the tele . I think I put in more effort to strengthen muscles . Good luck out there everyone 🤞
Have the same problem. Never was sure of the cause but now when you mention the pred usage. It could be that too. However, it started before pred. I think its worse now though.
Don't cut too much too soon - a big change is hard to get used to. Start with 25%, then 50% less carbs, and make the things you love a real special treat, not deprive yourself altogether. Just be disciplined - and yes, I know it is easier said than done!!!
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