Wondering whether anyone else with fibromyalgia issues, has problems with incontinence?I have signals during the day to get to the loo successfully, but after a night in bed, I am bursting and rarely reach the loo safely! It's upsetting and extremely embarrassing!
I practice my pelvic floor exercises frequently but when I desperately need the loo when I wake up, I just can't contain the flow...
It feels as though I have no muscle control at all!
Does anyone else have weak muscles like this???
I'm almost convinced I need a potty under the bed as I just can't reach the bathroom in time... Unfortunately it is a long way along the corridor to get there, so the physical limits of the house goes against my bladder control...
I am seeing a Nurse for a future scan and examination but just wondered whether this is just an extra hazard for worn out muscles???
If my shoulders/arms become so weak I rest accordingly... bladder muscles are not so easy to rest???
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Wobblygirl
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Good Morning, I am sorry you have it so bad, I do have problems with my bladder, mine hurts and cramps, and yes there are some accidents, even during the day, if it cramps I can’t hold it properly, I’m lucky that my bathroom is right next to my bedroom, so I keep thick kitchen towel ready to place there, just to get me to the toilet, as it doesn’t actually flow, it’s more dribbling, I was speaking to a lady on here, she wears thick tenor ladies at night, so that could help you, before you have your scan.
I know it’s embarrassing, but you can’t help it, let’s hope there is a simple solution and it doesn’t last. All my results came back normal, but I was also told that if the spasms didn’t happen while I had the scan, then there wasn’t a lot they could do.
Fingers crossed for you all will be okay with scan.
Hi I don't normally reply to posts but your comment about sliding horizontally to the toilet really made me giggle!! I also have bladder problems (very lucky not incontinent yet), and when I was first diagnosed with fibro there was a list symptoms on the info I received from the doc and it included irritable bladder!!! I get intermittent cystitis and sometimes when I need the loo and stand up it's like my bladder tips up like a bucket! And I need to get there quick 🙈. I'm sorry your suffering fibro is a t***t, but if we don't have a laugh about it we would sit and cry all day. Take care and thanks for the giggle!
It can be weak muscles but if you are doing your pelvic floor exercises this should have helped.But it can also be so many other things including Autonomic symptoms , age , hormones , infection that it is definitely worth getting properly examined to rule out other causes before you put it down to Fibro.
There are various tips to help bladder urgency and you can also be referred to the Bowel and Bladder Clinic in your area via the GP , or self refer , to get nerve conduction tests done and get specific physio exercises and advice to reduce the problem.
The clinic isn't the same as Urology it's like Physiotherapy for the lower body to get more control over symptoms.
Yes the clinic has been amazingly supportive to me. They did say that the pelvic floor exercises would take time...Next month I'll b checked more thoroughly and have a scan so I feel they're looking after me through this nightmare...
Hi,Yes i definitely have considerable continence problems which are much worse at night. Mostly I am unaware of the flow and have to wear pads day and night. I been referred to the Continence Clinic and am issued with free pads and advised on pelvic floor exercises. (Dont really work fir me)
My doctor has prescribed medication which does help in that it is much worse if i forget to take it. He prescribes it as being for Fibromyalgia, but I also have ADHD and incontinence is sometimes associated with that too.
It's miserable and I do hope the nurse can come up with some ideas that hekp
Given our population distribution in our community i.e. more women then there will be a higher incidence of this. Please talk to your health professional as there will be possible options but it will be more likely than not to be unrelated to fibro,
It is also as common for men to suffer from bladder urgency and incontinence , but unfortunately, men often feel inconfident to talk about it or get it checked out .
indeed but statistically out with the fibro community i.e. population as a whole there is a higher incidence in post reproductive age women than male equivalent age range.
As with any protentional comorbid incidence it is very important to compare background rate in general community against the fibro community.
I have interstitial cystitis which has links to fibro but it doesn't cause incontinence. I also just sip water regularly through the day rather than mugs full at a time and don't drink too much in the evening. I can no longer drink anything else than water. I also have a bladder that doesn't fully empty when I pee for some reason 🤷. I hope you find a workable solution Wobblygirl because bladder issues are no fun and we have enough going on hey 😏. Gentle hugs x
It's definitely a symptom of fibro. O have wee issues but different. I have to sit on the toilet to wee for like 10 mins then I stand up and need to sit back down and more does come out. Then I wash my hands go to leave the bathroom and need a wee again and a bit more comes out. It's like there's a pocket in there that it gets caught in. On the it her hand I can generally hold it for hours if I'm out but have to wake up 2ce a night for huge wees as if sleep wasn't distrupted enough
I'm exactly the same! It feels like I go from empty bladder to not being able to hold it whatsoever! I now have a commode as you can guarantee someone is in the toilet when I'm in this state. I now have to wear incontinence pants. At 45 never did I think I would lose my muscle control. My bladder goes into spasms and have now been diagnosed with overactive bladder syndrome
Yes I do suffer with this but mines to do with my b12 deficiency. I would get in to see your Dr just to get things checked out. U are right it is embarrassing n when out u are worried it will happen. A lack of b12 can really make u wee for England n then some lol! I’ve just hit my first drop so in the midst of this rn. Nothing u can do so have to go with the flow. Gentle hugs 😊🤗
hi. I had been diagnosed with an over active bladder a good few years ago. Prior to being told I have Fibro Did not even think of a connection to that. As I am up 3 or 4 times a night to go to the loo. I am lucky I don’t have the problem of nearly wetting myself in the morning. As I am up all night on and off . I do wish I could sleep longer than 2 hours a night though. Are you taking any medication for your Fibro that makes you sleep ? That’s why I can’t take any tablets. As I would wet myself then I think. Good luck. Hope it improves for you
I have the same issue and to make matters worse my bathroom is downstairs 🫣
Fine during the day can hold fine when needed, BUT at night I wake up once or twice needing a wee, the minute my feet touch the floor the need becomes immediate and generally by the time I get to the bottom steps the underwear has gone for a burton! There is no concept of holding 90% of the time, it’s like the pelvic floor muscles have just died..
Similar for the morning, unlike during the night, I always make it to the loo but when I wake, I need to know the toilet is free before I stand up….
I totally understand your predicament and it is dire, isn't it?Thank you for being so open and sharing here... I certainly feel less alone now. Let us hope remedies be found for our individual cases.
I’ve had this problem for years, I have fibro and lupus. The only thing that works for me is Botox injections in my bladder. I’m hoping to have them done again soon as I’m back to the incontinence again now.
Asuggestion if u may, now I do t know how big ur bedroom is but is it possible to section off a bit of the bedroom ( most likely cupboard area ) & install an en-suite in there thus making the battle to reach the loo as fast as possible. U only need to go for a toilet & a small basin to wash hands in.
At least U can simply walk to the en-suite & do ur business & all without any embarrassing accidents.
On a side note I use mens version of an absorbent pad as I suffer with wanting to take a leak at any time & if I don't get to the toilet fast enough I end up having an accident, it's madness during the night time as the slightest pressure on my bladder & I need to go & most of the time it ends up that it wasn't as urgent as my bladder thought it was & sometime I'm in the toilet waiting for the sensation to subside. It's a ball ache tbh.
My personal experience is similar to yours. It's not an issue with weak bladder muscles, it's related to the nerves.
"Like other neurological conditions that can affect the nervous system, Fibromyalgia affects the nerves. The nervous system actually plays an important role in regulating the storage of urine in the bladder. Abnormal nerve signals can cause the bladder to spasm, causing a lack of bladder control."
I was given amitriptyline for nerve pain and found that it helped massively with my bladder problem - I felt I'd got my normal life back (I was only 40). When I stopped taking it, it was 4 days later that my symptoms returned. I did some research and found there are some countries that prescribe it for bladder issues. I spoke with my GP who was happy to continue prescribing it (it also helps me achieve deep sleep). I'm still taking it now over 2 and half years later and no longer have any bladder issues.
I really feel for you. I do hope you are sorted soon.
I can't wee without having to self catheterize!! It all began when I started having to really strain o have a wee, lots of UTIs, many visits to urology!! I can only go without catheter when I'm absolutely bursting and it just comes or if straining to have a number 2 which is strange! They tried dilation to no avail. I had a urodynamics test last March where I was told my muscles don't work and my bladder is just a sac!! I've had to self catheterize since 1st March last year. This means I still have a lot of UTIs!! I suppose the catheter is like a foreign body.I also have a lot of pain everywhere 24/7 because I have many conditions. Sorry to go on . You could ask for a urodynamics test??
Oh goodness that does sound so awful for you...Yes my bladder feels like an open sack too and gravity just opens the floodgates for me! Whilst sitting I'm OK but as soon as I rise I am just racing for the loo to try and not wet myself!!!
So sorry I didn't see or reply to your post before...
I've had another interesting week with a mad dash into hospital! Still can't get over the suspected diagnosis...
Please accept this excuse that I'm not really on the ball again yet!!!
HiThank you for your kind words, much appreciated. You really don't need to apologise but it was nice of you to do so. Having to self catheterise isn't too bad compared to some of my other health conditions. Someone said to me how do you manage to keep smiling and I said there's no point in moping around because it won't change anything!! Yes, I have my down days but I give myself a good talking to as there are plenty of people who are worse than me!!
I'm sorry you've had to go to hospital, bet you couldn't wait to get home!! I do hope you are ok now.
Take care
Lots of love and hugs Lynne xxxx 💜💟🫂❤️
So sorry about your situation, Wobblygirl.
Think a potty under the bed is a good idea. Practicality rules.
Besides that, or instead of, there are incontinence knickers. You can buy online or make your own.
There's a really understanding person called Amy Nix on youtube who discusses her own incontinence issues while showing how to sew the pads: Amy Nix on pads: youtube.com/watch?v=OEARLPu... Sewing Cloth Pads 101 – How to Include a PUL layer
There's also a diet for Interstial Cystitis that may be of help: primehealthdenver.com/inter
hi hun, I went through a time when this was a major problem for me… as fibro is inflammation it makes sense that our bladders are under attack like every other muscle…. I stopped all inflammatory foods gluten dairy and caffeine it stopped the problem for me ….it still happens occasionally but I still avoid caffeine and that has made a huge difference I am back on wheat and dairy now … hope this helps you also check it’s not a side effect on any medication you take as it was in one of mine …. All the best x
Cheers I try and live without any drugs 4 fibro... so no side effects possible!Been advised to cut back on caffeine but need to exhaust my current hoarde b4 buying alternatives...
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