question about 'relaxing' and weird body/nerve stuff

[emeraldcitybaby]

Hi, so I've been lurking for a little bit and 24/7 training on and off for the two years or so, and I made an account to ask this forum about some body sensations I've been having.

I've been wearing 24/7 for about a month straight now (since Jan 20), aside from a few days for visiting friends. I've trained for about a month at a time on and off through last year.

I'm at the point where I'm relaxed all the time and can reliably open in pretty much any position except sitting straight up in an office chair, when I visited my friends I had to be by the toilet constantly. If I zone out on what I'm doing I can notice the sensation of pee passing through my urethra. If I shift positions or stand up I can feel pee flood my diaper. I feel the leaks but don't necessarily authorize them bc I'm more or less constantly authorizing them. 

Anyway, last week I got the bladder flutters, and I had a few days where my bladder was SUPER DUPER sore and it felt like I could not release or get it to push pee out, even though it felt like there was pee in there. Not sure if my bladder was very full at all once I finally got it to open. But that's not what I want to talk about, that's just a little context.

What I want to ask about is full body/nerve sensations.

Sometimes when I'm relaxing, I feel tingles in my hands, feet, neck, and face. Sometimes it feels like pins and needles, other times like running water. I have a lot of times I feel running water on my leg and I'm sure I'm leaking even though I'm in a fairly fresh diaper, and may not have even wet significantly yet. My nose will go numb, my vision will blur, and it'll feel like pinpricks on my feet.

What is this, is it something other people have experienced? I haven't had a history of nerve damage or prior symptoms, I stay well hydrated and I eat well (not just dino nuggets lol). I've only noticed it come on in times when I'm 24/7 for an extended period.

 

I kinda wonder if I'm feeling my brain rewiring itself

[sparklezBear]

Allow me to recommend you go see your doctor. If experiencing such neural changes, you need thorough investigations. It could be anything from a lack of electrolytes (read over-hydrated), to something more concerning.

[Diapered Dave]

When was your last physical??  Usually, a full blood-panel lab work is done (At least that's what they call it where I go..) and this checks all your levels, which tells the doc how everything is working. I've had tingles in my feet and legs before, which a chiropractor fixed, but over your whole body? Yikes.

Maybe you have to eat MORE dino nuggets...  ???

[emeraldcitybaby]

48 minutes ago, sparklezBear said:

Allow me to recommend you go see your doctor. If experiencing such neural changes, you need thorough investigations. It could be anything from a lack of electrolytes (read over-hydrated), to something more concerning.

36 minutes ago, Diapered Dave said:

When was your last physical??  Usually, a full blood-panel lab work is done (At least that's what they call it where I go..) and this checks all your levels, which tells the doc how everything is working. I've had tingles in my feet and legs before, which a chiropractor fixed, but over your whole body? Yikes.

Maybe you have to eat MORE dino nuggets...  ???

Yeah I kind of figured this would be the sort of response I would get. I should probably be clear that I take a multivitamin every day and my diet is generally Very Good (and by that I mean I'm orthorexic and buy fresh food daily and waste nothing, the dino nuggies was a joke). I drink on average 2-3L of water per day, and only water. I can say with certainty this is not electrolyte related because of my experiences with my ED. My last blood work was in July and my doctor was not concerned about anything then (and I did have this going on over the summer when training). 

I should also probably be clear that this only happens when I'm dissociated, my sphincter is relaxed, and I'm urinating *into my diapers*. It does not happen when I am dissociated and not diapered. It does not happen when I am urinating on the toilet if I happen to dissociate there. It does not happen when I am wearing and simply dissociating. It is the mechanism of relaxing the sphincter and letting out my urine that does it, and most of the time I take advantage of dissociating to make that happen, because I have DID and a toddler alter who has no control (learned that the hard way after wetting and messing the bed when she popped into dreams), which makes it incredibly easy to get to the can't help it stage.

The only way to describe it is that sometimes, in order to send the signal to relax to my bladder/sphincter, it has to cross other nerve lines in my brain/nervous system, and that's causing a misfiring of signals. If I felt it any other time than during my attempts to pursue incontinence I wouldn't be posting here, I would be making a doctor's appointment.

Edited February 20, 2022 by emeraldcitybaby
added details about water intake/electrolytes

[sparklezBear]

13 minutes ago, emeraldcitybaby said:

The only way to describe it is that sometimes, in order to send the signal to relax to my bladder/sphincter, it has to cross other nerve lines in my brain/nervous system, and that's causing a misfiring of signals

This is not the way the brain works. Different regions of the brain are involved. Somewhat relieved, from the sounds of it your experience is likely not the result of anything physical.

[~Brian~]

13 hours ago, emeraldcitybaby said:

I kinda wonder if I'm feeling my brain rewiring itself

@emeraldcitybaby

if you are feeling strange sensations like this, it may be normal to some extent. When you feel the need to release, you are feeling your muscles relax, and you may have some sort of sensations that feel weird to you. Being that I am disabled, and I have cerebral palsy, there are a lot of sensations that can overwhelm me, and most of them are OK, because I’ve lived with it for almost 50 years.

11 hours ago, sparklezBear said:

Allow me to recommend you go see your doctor. If experiencing such neural changes, you need thorough investigations. It could be anything from a lack of electrolytes (read over-hydrated), to something more concerning.

As @sparklezBearsays, to be safe I would go to my doctor and explain to him what is going on. Remember that your body is full of sensations that you feel, sometimes that you don’t, and in my estimation there should be someway for you to be checked to make sure that you are physically OK. If you are physically OK after going to a doctor, then most likely the sensations are something that you will be feeling most times anyway, but since you told us that there was one time that you said that your bladder hurt you, this would be something that I would want to have checked.

it is always a good idea from time to time to be checked from head to toe by your doctor. This is called your “annual physical“, and because of COVID-19, my physical has been at least three years in the making, and this week I will go to the doctor for a physical myself. One of my concerns, is that my weight went up a little bit because of COVID-19 and now I weigh approximately 220 pounds. It is my hope that because of what I have done with my diet, and the way I have change what I have done, that it makes a difference and that even if in a small way I lose a little bit of weight, at least I will have that confirmation that I have done the right thing. I also have restarted my physical therapy itself, and even though there are times that it is hard work, I know that that is something that I need, and it is my hope that by doing more PT then I will be able to get stronger, and then hopefully that will translate into me being able to move a lot easier.

One thing that I have noticed however is that my back has been noticeably better since my new recliner was installed last week. Prior to that, I was sitting in an old recliner that was given to be by my parents, and it was a good recliner for what it was used for and for how long it was used, but most times the older the furniture, the harder it is to deal with after a while. This recliner is a cat napper, and it has memory foam in it, and right now sitting in an upright position I feel great. If I can get my back under control, then 90 percent of my problem is solved, and the rest of it will just be something that I have to deal with. Remember that your nerves are like wires, and each time you feel a sensation, it goes through most of your wiring, and that is how you are feeling things. When you have a disability like me, some of these feelings seem normal, because of the type of disability you have, or because you’re used to it. However, like everyone above Has been saying, it is better that you go to your doctor and have yourself checked, then if everything else is OK, then you will know that it is just something that you need to deal with. I would definitely go to the doctor if you were feeling pain in any sort because of what you were doing. Pain indicates that there may be a problem, and even pain sometimes is normal, but if you are dealing with pain, it is a way for your body to tell you that something is up. For example, if I feel pain in my stomach, then there are two things going on: one is either you are hungry, or something is digesting and you are feeling that, and as things move through your stomach they get to your bowels. The pain in your stomach may be because of whatever you have in your balls, and once you release it the pain subsides after a while. The second type of pain is chronic, Because it is there and he’s always been there every once in a while. Chronic pain is something that I deal with every day, but if there is a pain that I am not sure of, or some thing that I have not dealt with, I know the difference between chronic pain and new pain.

I wish you luck, and I hope that they’re able to find out why you are dealing with this pain!

good luck!

Brian

[FretaBWet]

Hi Emerald City Baby. It's probable that the feelings you're getting are physical in nature but generated by your parts. I offer this opinion based on the results of your last doctor's visit and your healthy eating habits. The average person doesn't understand how powerful the brain is in a person with DID. Good luck to all of you.

Hugs,

Freta

[Enthusi]

Obvious disclaimers about go see your doctor… okay now that that’s out of the way… 

Read up about dysfunctional voiding.  It’s a generic term that has to do with the the communication and coordination of bladder control being out of sync.  It could be related to uneven regression of your system so that the various components are wearing out at different rates.  It could be that you’re losing the muscle memory and your brain is filling that gap with noise. It could be that your bladder and sphincter muscle are no longer acting as a team.  Heck it could be none of those, or all of those! 

For me personally, ever since my bladder control spiraled, my urinary system is ALWAYS doing weird sh*t. So much so I take every new sensation in stride.   As long as I’m not having severe urinary retention and it doesn’t hurt to pee it’s smooth sailing!  

Plus, if it’s any consolation, the fact that your bladder is acting so erratic just means you need to be wearing a diaper at all times… just to stay safe!

 

Edit: I didn’t see that the OP was dated from a few months ago.  Any updates how’s it going? @emeraldcitybaby

[DLJeff52]

16 hours ago, Enthusi said:

Obvious disclaimers about go see your doctor… okay now that that’s out of the way… 

Read up about dysfunctional voiding.  It’s a generic term that has to do with the the communication and coordination of bladder control being out of sync.  It could be related to uneven regression of your system so that the various components are wearing out at different rates.  It could be that you’re losing the muscle memory and your brain is filling that gap with noise. It could be that your bladder and sphincter muscle are no longer acting as a team.  Heck it could be none of those, or all of those! 

For me personally, ever since my bladder control spiraled, my urinary system is ALWAYS doing weird sh*t. So much so I take every new sensation in stride.   As long as I’m not having severe urinary retention and it doesn’t hurt to pee it’s smooth sailing!  

Plus, if it’s any consolation, the fact that your bladder is acting so erratic just means you need to be wearing a diaper at all times… just to stay safe!

 

Edit: I didn’t see that the OP was dated from a few months ago.  Any updates how’s it going? @emeraldcitybaby

@Enthusi you've probably posted this elsewhere, but I'm too lazy to look...do you have a list of the "weird sh*t" your urinary system is doing and are they listed in order of how you observed them?  Every journey is unique, but helpful to look out for any "road markers" along the way!  

 

[Enthusi]

@DLJeff52 happy to share… ESPECIALLY  for you!! ??

In no particular order: 

- The vast majority of the time I feel no bladder pressure, and then all of a sudden seemingly out of the blue I will get a sudden intense urge to go, immediately followed, or even preceded by reflexive wetting.   Either way, it catches me off guard   

- Some times bladder emptying is an event consisting of 3-4 small wettings over the course of 30 minutes. In between I have no sensation of needing to go.  This is most often observed in the AM.  Though other times it’s a full one-and-done soaking.  

- I don’t usually experience a full bladder because I usually spontaneously wet before it gets that far.   However there are times when I will feel some degree of bladder fullness but I’m powerless to do anything about it, other than ignore it until it fills up a bit more and spontaneously drains. 

- I often wake up in the morning with a wet diaper and no sensation of having to  pee. And yet when when I get out of bed I will feel the usual spike in pressure quickly accompanied by a full wetting. 

- On rare occasions I get what I call “bladder flutters”.  That is, for 10 minutes  or so I will feel mild fullness follows by a tiny bit of seepage until I don’t notice any sensation, and then it repeats a few seconds later. 

- Dribbling variable amounts throughout the day.  I’m not even sure what it is I’m dribbling. Based on the consistency, it seems to be a mix of urine and pre-cum. 

- Speaking if dribbles, quite often there is a drop or two of urine in the urethra or on the tip, which tricks me into thinking I’m peeing more than I really am.  

Like I said, weirdness. Though I for one am glad you’re on this journey and I look forward to hearing your progress!

[DLJeff52]

43 minutes ago, Enthusi said:

@DLJeff52 happy to share… ESPECIALLY  for you!! ??

In no particular order: 

- The vast majority of the time I feel no bladder pressure, and then all of a sudden seemingly out of the blue I will get a sudden intense urge to go, immediately followed, or even preceded by reflexive wetting.   Either way, it catches me off guard   

- Some times bladder emptying is an event consisting of 3-4 small wettings over the course of 30 minutes. In between I have no sensation of needing to go.  This is most often observed in the AM.  Though other times it’s a full one-and-done soaking.  

- I don’t usually experience a full bladder because I usually spontaneously wet before it gets that far.   However there are times when I will feel some degree of bladder fullness but I’m powerless to do anything about it, other than ignore it until it fills up a bit more and spontaneously drains. 

- I often wake up in the morning with a wet diaper and no sensation of having to  pee. And yet when when I get out of bed I will feel the usual spike in pressure quickly accompanied by a full wetting. 

- On rare occasions I get what I call “bladder flutters”.  That is, for 10 minutes  or so I will feel mild fullness follows by a tiny bit of seepage until I don’t notice any sensation, and then it repeats a few seconds later. 

- Dribbling variable amounts throughout the day.  I’m not even sure what it is I’m dribbling. Based on the consistency, it seems to be a mix of urine and pre-cum. 

- Speaking if dribbles, quite often there is a drop or two of urine in the urethra or on the tip, which tricks me into thinking I’m peeing more than I really am.  

Like I said, weirdness. Though I for one am glad you’re on this journey and I look forward to hearing your progress!

@Enthusi If you haven't made this its own topic, you should!  

I can definitely relate to just about all of them except #5 and #6 are not very frequent.  I do find that there is that drop or two in the urethra or on the tip...do you worry about UTIs from that?  How much cranberry juice do you drink or do those equate?

Thank you!

[Enthusi]

6 hours ago, DLJeff52 said:

@Enthusi If you haven't made this its own topic, you should!  

I can definitely relate to just about all of them except #5 and #6 are not very frequent.  I do find that there is that drop or two in the urethra or on the tip...do you worry about UTIs from that?  How much cranberry juice do you drink or do those equate?

Thank you!

Great question! I worry about it a little bit. But honestly that’s one of the reasons why I wanted to tell my primary care doctor so that way if I need an antibiotic or whatever it wouldn’t be difficult to obtain. This isn’t medical advice but I’ve read mixed things about the effectiveness of cranberry juice. 

To be honest I am much more concerned about urinary retention especially down the road.  It is conceivable that the bladder itself can get too weak to overcome the pressure needed push urine out against the external sphincter muscle.  As long as all parts of the bladder equally go to hell it should be fine.   

[DLJeff52]

12 hours ago, Enthusi said:

Great question! I worry about it a little bit. But honestly that’s one of the reasons why I wanted to tell my primary care doctor so that way if I need an antibiotic or whatever it wouldn’t be difficult to obtain. This isn’t medical advice but I’ve read mixed things about the effectiveness of cranberry juice. 

To be honest I am much more concerned about urinary retention especially down the road.  It is conceivable that the bladder itself can get too weak to overcome the pressure needed push urine out against the external sphincter muscle.  As long as all parts of the bladder equally go to hell it should be fine.   

So glad to have a trailblazer breaking ground, so to speak, and to learn from! Great clarification on the doctor protocol...making an appointment with my primary care doctor right now!  My urologist has already diagnosed incontinence so hopefully that will help expedite!  Had read up on urinary retention, but good to revisit and be aware of that possibility.  You're awesome @Enthusi have a great day!