Fibromyalgia with bladder problems

[dena_deason]

So I am new here but my name is dena I have had fibro for at least 11 I can't remember when I was diagnosed with it. But one night I could not pee. Went to er had to get catherter. Little to say back and forth with catherter and not. I am in a cattherter full time now. Doc said it was due to fibro. I did not believe him so I looked it up and sure enough it can cause that any one else have this problem

 

[JayCS]

Hi dena, and welcome.

Bladder problems is an old one, altho not many aside of me talk about it, so it's hard to know how common it is.
But total blockages are a new one to me, I don't think I've ever heard of that in connection with fibro. - The "FBI", the Fibromyalgia Bladder Index, has a subscale for urinary urgency and bladder pain, and one for frequency and nocturia. But not one for blockages. A study from 2020 shows that women with FM definitely have more bladder pain than women without.

I have all of these (OAB, PBS I'd call them), but actually my bladder pain goes in the direction of blockage, because it hurts when I start to pee, i.e. before peeing, not like a UTI whilst peeing. That's being a bloke, not sure if that's harder for females to distinguish.

One of my think tank docs thought as bladder muscles are involuntary I won't be able to influence them. But I did learn.
It was the body own amino acid/neurotransmitter GABA that works fairly well for a lot of my fibro symptoms, around 10 symptom areas.

GABA relaxes muscles, incl. the bladder ones, and increases serotonin which puts us more into rest & digest mode, and decreases cortisol & histamine which put us more into fight or flight mode. When the pain starts again, I take a little more, spread over the day. If I forget to take some, the pain will go up from normally 0 to 1-3, if other problems like my severe Ache, or histamine or forgetting even more that pain can go up to 6-7, which means close to or actually crying out. Then I have to work on the other issues as well as increasing the GABA.

But GABA is a tricky one, you usually have to start low (e.g. 125mg sublingually) and go slow. Unless you're as naive and needy as me, I started with 750mg and am now on 2-4g/d, that's 2x600mg doses and 6-8x300mg spread over the day and night. Taking too much can cause the same problems as taking too little and I also use glutamine to balance out the GABA, otherwise I wouldn't be able to take that amount.

Where I see the similarity is that blockages may be the extreme form of bladder/urethra cramping/spasming.

Blockages I get in my esophagus, but from a visible stricture, and I can only influence that myself by certain complicated ways I eat.

Hmm, that makes me remember that I can also influence the bladder pain by the way I move and hold my body - e.g. straight. But it's good for me to know when the pain is there, cos that's a sure-fire signal that my serotonin is down in other areas of my body too.

 

[dena_deason]

I can't remember what my doc called what was wrong with my bladder but to put it in a nut shell my bladder don't tell my brain I need to pee so it over fills like over 1500 ml where a normal bladder holds 400 to 500 ml and my brain don't tell my bladder it needs to pee and my bladder is not strong enough to pee

 

[JayCS]

I can't remember what my doc called what was wrong with my bladder but to put it in a nut shell my bladder don't tell my brain I need to pee so it over fills like over 1500 ml where a normal bladder holds 400 to 500 ml and my brain don't tell my bladder it needs to pee and my bladder is not strong enough to pee

Interesting. Doesn't sound similar to my symptom now tho, and I can't relate it to fibro either. Usually we're overstimulated, this sounds understimulated. It doesn't come with pain, then?

Even if I understand the bladder being "undersensitive" that doesn't sound like the same mechanism as the "not strong enough". As I understand and feel it, the bladder/urethra sphincter muscle needs to be released more than the other bladder muscles needing to press. That'd make them too strong or too immovable rather than too strong. But looking up "urinary retention" the closest reason would seem to be a "nerve issue", and maybe that's the problem that it's hard for the brain to tell the bladder to pee if the bladder isn't telling the brain that it's necessary? Hmm, still don't get the "strong enough" part...

 

[dena_deason]

Not really for sure

 

[BlueBells]

Hi @dena_deason and @JayCS

I find at times I'm going to the loo (toilet) every hour or so, and then back to normal. A friend who knows four others with fibro said they also complain of this intermittent urge to go, or touch of incontinence.

I also get random diarrhoea (admit I checked spelling ) and I control that with anti-diarrhoea tablets if I'm going out in public. Friend said the ones he knows get it too.

I've been checked for IBS and any gut infections, but nothing to cause it.

 

[JayCS]

every hour or so

Yeah, mine also fluctuates quite often, but once an hour day and night is 'normal' for me, most annoying is having to go every 20 minutes for about 3h, and if I don't get there inside of minutes it gets worse and more painful. I had that before fibro too, but not as painful. Dreadful anywhere without toilets or on holidays, so as my docs joke I quickly know all the toilets in any town. Started getting imperative to first sort out where I can go.
Good to know others know that touch of incontinence too, my wife was worrying it's something worse until my bladder exam a few weeks ago came clean.

As abdominal problems, e.g. IBS, are part of the criteria of fibro's "symptom severity score", I can well see people with fibro but without official IBS having the odd bowel problems more than non-fibro.
I've found I'm now able to keep all that under control pretty perfectly, and I'm pretty sure that's more my elimination diet than my supps. I suffered terribly from abdominal problems from my teens on. And it's never been better than now, cos the need has grown so high to at least get under control what I can. When it happens now I think it's usually after eating food that was in hindsight slightly off.

The "Euro key" (see wikipedia) unlocks toilets and other facilities for people disabled or with specific problems for free (invented in Germany in 1986). 100,000 in Europe, 350 in the US, supposedly. In the UK the "Radar / NKS" key (>9,000, NKS = National Key Scheme, from Disability Rights UK, see wikipedia).
Found that out from listening to a local online talk by my GI doc, some patient representatives knew that. Always worth keeping eyes and ears open.
Altho my "degree of disability" isn't quite sufficient, and I haven't got Crohn's, I'll have enough GI & bladder problems to warrant getting one, just I'm no longer able to go far from our flat anyway.

 

[BlueBells]

Hi @JayCS

When it happens now I think it's usually after eating food that was in hindsight slightly off.

I Definitely know that one We all push limits now and then. I also think it's nervousness. All my life, especially from 30's on, little things can stress me and off it goes. And I mean little things! Appointments, be it doctor or accountant or making sure I get the car to garage for booked service. Not always, just now and then, but it can be bad for weeks, then good for weeks. I always have anti-D, Gaviscon, and De-gas with me at all times.

Good to know others know that touch of incontinence too, my wife was worrying it's something worse until my bladder exam a few weeks ago came clean.

Not sure how much is lack of pelvic exercises , how much fibro, but it's so random, if just muscular, it would be consistent, I think. I always wear a pad just in case when I'm having a bad spin. Only been caught short at home so far, (one should not ignore warnings just because loo handy). but never know.

The "Euro key" (see wikipedia) unlocks toilets

About 30 to 40 years ago we had some public toilets that were coin operated, but I don't think any of those exist anymore. All are open all the time.

Thank you @dena_deason for starting this thread. I have been going to, but a bit embarrassed. Surely anonymity should help us overcome that, but I am shy Thank you again

 

[BlueBells]

@JayCS

Oh, the every 20 minutes or so, yes, I've had that, very annoying. I got checked out and nothing wrong. That why I asked my friend, and probably fibro.

 

[JayCS]

Not sure how much is lack of pelvic exercises , how much fibro, but it's so random, if just muscular, it would be consistent, I think. I always wear a pad just in case when I'm having a bad spin. Only been caught short at home so far, (one should not ignore warnings just because loo handy). but never know.

Yeah, I do try to remember to Kegel etc. in between my back exercises. But I agree it doesn't seem muscular in the sense of muscle strength. However as I seem to be able to influence it with GABA bringing the muscle relaxation into balance, I do think it has to do with the muscles, but more their neuro-aspect. Not sure yet if the occasional periods are from the pain or from too much relaxation or neither. Since my wife gave me a small pad I wanted to try 2 months ago, I haven't needed one... Like an umbrella you have so it doesn't rain.

All are open all the time.

That's what I call ..... "convenient".... Those that aren't shouldn't be called conveniences, I spose....
You may have a "civil" population, but here the problem is that quite a few people don't know how to or don't want to use them properly. Whilst disabled people might also dirty them, they will need them to be pretty clean, esp. if they are blind.

What the organization in Germany also does is publish a brochure and I think app with many toilets listed called Der Locus, one of the cleaner colloquial words for toilet. Similar to a satnav I spose, but praps only recommendable ones?

That why I asked my friend, and probably fibro.

Yeah, I have much more success treating everything as best I can, rather than blaming on the fibro, but sometimes at least it may take a part of the worry, once everything's been checked. As I've been living with a great deal of fairly inexplicable symptoms all my life I've learnt to just accept without needing something to put it down to. And at the same time always on the lookout for new connections and helpful workarounds.

 

[BlueBells]

Since my wife gave me a small pad I wanted to try 2 months ago, I haven't needed one... Like an umbrella you have so it doesn't rain.

@JayCS Yep, spot on !!! I think, in years, I've only 'needed' the pad a couple of times, but it's good to know if needed. Conveniences are not always conveniently located hahahahaha

Toilets still get messed up at times, but it may also be population levels. I am in the country, but I have been to one in Melbourne, oooohh not good at all. We go to shopping centres or service/fuel stations when possible, as both are generally quite clean.

 

[tinabob]

Thank you all for sharing, I did not realize that my blader control could be from my fibromyalgia.