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Can severe urinary illness cause chronic fatigue?

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Good morning to all, I have a question that have been bothering for a since long time.
As I briefly told in my story, I suffer from an extremely severe and rare urinary illness. This has also severe effects on my sleep ... for example:
1. Waking up 10-14 and up to 20 times per night to urinate, everytime with excruciating urethral pain.
2. My sleep is really disturbed, because even sleeping I still feel my very intense urethral burning 24/7 and great bladder fullness. Even my dreams are disturbed by these symptomps, that sometimes change the dreams themselves.
3. Several days I cannot sleep at all, because my urethra is broken into pieces (tremendous burning, like hell) or sometimes because my bladder bursts. In particular, it always happens me some days every month for “physiological” reasons, and when I get UTIs, etc.

Now, I ask you if someone has an idea: can all this cause ME symptomps? I usually combine 8-9 hours of sleep but if I want I can reach 12-13 in a row ... although I never do it, because sleep makes my urine more concentrate and my urethra explodes (needing to drink something before and during sleep to prevent or reduce this).
Some doctors said me that a similar interrupted sleep could really severe my mental capacity, and possibly worsen or cause ME, but only so,d of them agrees with this theory.

*I am a male, 19 years old (nearly 20 now)
 

sunshine44

Senior Member
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i think some urinary issues are connected for sure.
I had lots of urinary issues and even exploratory surgery to widen urethra and cauterize infection and there was an absolute connection for me to these infections and inflammation. Keep in mind, i never tested positive for infections...sigh. They only found it in surgery and it did come back 6 months after surgery.
 

Pearshaped

...and then things went pearshaped.
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Im not sure if this really could cause ME symptoms since there are plenty of symptoms that have to match for ME.
But out of question all this urinary stuff is weakening your body.

Have you tried D-Mannose?

What were your experiences with antibiotics? and did natural remedies make a difference?

Have you been tested for any other ilnesses that include or even cause urinary problems?

In your intro thread is a Post from @PatJ
she has listed many very inportant documents about ME,including the criteria for ME.
 
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Dear @Sunshine 44, really thanks for your answer! Can I ask if you resolved or improved these symptomps?
I’m sorry for your condition, but a lot of similar things happened to me:
1. I needed to cauterize several times because of abnormal masses in my urethra (and sometimes bladder): deep ulcers, cuts, granulomas, cysts, ... and for my extreme inflammation. I’ve never needed to widen urethra, though, since I cannot even touch it that it “crumbles” down.
2. My UTIs were very severe and kept coming back since I was 10. I also had a urinary Tuberuclosis two years ago, which destroyed me.

So I ask you if you resolved this infection and inflammation.
I thank you again and remember: for any question, I have a lot of personal experience in these things, so maybe I can help you.
 
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Dear @Pearshaped, really thank you for your answer and for confirming that these issues weaken my body.
I will answer your questions:
1. I have to take very strong antibiotics for a Tuberculosis UTI: now I am reducing them, but slowly.
2. For the other severe, recurring UTIs I still have to take them. Natural remedies only work in prevention and not much. That’s because my UTIs are always very strong, hemorragic and hit an extremely inflamed tract.
I tried D-Mannose without results, since my UTIs seem to “climb” the urethra and involve several bacteria, as Ureaplasma, Proteus, Staphilococcus, etc.
But I’m going to try Mannose again as Ausilium String, and Cistiquer ... Hope they will work. :redface:

I saw @PatJ post and it is really useful, now I am trying to search more, since I fill a lot of ME symptomps, but I am not sure on others.

Thank you again, a hug!
 

lenora

Senior Member
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Good morning to all, I have a question that have been bothering for a since long time.
As I briefly told in my story, I suffer from an extremely severe and rare urinary illness. This has also severe effects on my sleep ... for example:
1. Waking up 10-14 and up to 20 times per night to urinate, everytime with excruciating urethral pain.
2. My sleep is really disturbed, because even sleeping I still feel my very intense urethral burning 24/7 and great bladder fullness. Even my dreams are disturbed by these symptomps, that sometimes change the dreams themselves.
3. Several days I cannot sleep at all, because my urethra is broken into pieces (tremendous burning, like hell) or sometimes because my bladder bursts. In particular, it always happens me some days every month for “physiological” reasons, and when I get UTIs, etc.

Now, I ask you if someone has an idea: can all this cause ME symptomps? I usually combine 8-9 hours of sleep but if I want I can reach 12-13 in a row ... although I never do it, because sleep makes my urine more concentrate and my urethra explodes (needing to drink something before and during sleep to prevent or reduce this).
Some doctors said me that a similar interrupted sleep could really severe my mental capacity, and possibly worsen or cause ME, but only so,d of them agrees with this theory.

*I am a male, 19 years old (nearly 20 now)

I would think that ultimately, if the sleep is disturbed as much as yours, it could at least start one down the road of ME. Since these are questions that haven't been answered yet, it's hard to make a judgment.

What do you drink to keep your urine in the state the doctors want? I would imagine that just plain warm water would be best for your condition. Again, I'll ask this question of you: What is your long-term outlook according to the doctors? My husband fell through the roof a number of years ago, and we have to watch out for certain changes in his condition. All things considered, he's doing remarkably well and things did improve as time went on. (He landed on a playpen in exactly the wrong way). What a mess....and I was mad at him b/c once again he wouldn't listen to just plain good reasoning. Don't play danger with yourself...but I can tell that you're probably way too tired for that, anyway. You're very young to deal with this and I hope that life improves as it goes along. Chances are that healing will take place, but you must do your part also. Are you eating well (really well, even if it means raw fruits and veggies and plenty of meat), try to build your strength up as much as possible (I'm talking gentle walking, not barbells), being out of bed as much as possible...anything and everything you can to make yourself stronger.

I did that between my first and second surgery, and there was a world of difference in how my body reacted to the surgery and how healing went. The surgeon was totally amazed. You can try and see how things go. Your body will react in a negative way at first...that's what it does, but try to get out into at least a back garden and see how much the outside world can bring into your being. We go hand in hand...nature and humans and we need it to fill our souls as much as lifting our spirits. These are things I've done myself, so I know the difficulties involved. I know we have different problems, but pain and lack of sleep is something so many of us share.
Yours, Lenora.
 

Pearshaped

...and then things went pearshaped.
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Ah I see..
With such a whole lot acute and chronic infection going on, no wonder you feel exhausted.
I hope you have support from a good GP who continues to help you battle these infections.
I hope you get answers and find new ways and things to help your body to heal.All the best for you.
 
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ME has been associated with fluoroquinolone antibiotic use. Have you taken those?

Also, activated mast cells can cause bad fatigue among other things.
 

sunshine44

Senior Member
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temporarily in 2013 surgery and a month of antiotics made it go away, it did return in spurts and then alot more after stress and other health situations in 2016/2017.

Unfortunately dealing with all kinds of things now and bedridden from neuro lyme etc. I also tried many herbs and supplements. Many helped but it would return....sigh.

I do think its possible to heal and why i now focus on healing my immune system instead of just 'killing' the bugs.
 
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Dear @Lenore, thank you again, I agree with all you’re theories. Actually I am not passive but try to be active ... although my condition makes me impossible to do real activities (i.e. vibrations, ...). I do these things:
1. “Correct” diet (clearly a 100% correct diet does not exist, I try to do the best).
2. Postural exercises to keep muscles strong.
3. I try to walk in my garden every time I can, at least to catch sunlight.
4. I continue my studies in Engineering, although with great difficulty and 100% digital.
5. Other things (I can be more specific).

I agree with you on all: we must make efforts to improve our conditions, we must try to get better.
But unluckily, I have no idea of how my illness will develop, doctors can’t say nothing about it, except that our goal is to improve and not to cure it (but I still hope for a remission!).

Ultimately, I am sorry for what happened to your husband, and I hope he got well from his injury.
Thank you again
 
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Dear @Pearshaped, thank you again, all people confirm this relationship.
I am cured by the most expert urologists and neuro-urologists of my country, and I have also a very good and comprehensive GP. But now I am trying to contact other types of doctors, because as I said my problem seems to be more general than I’ve ever thought (many symptomps).
Thank you for your kindness, best regards to you!
 
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Dear @wigglethemouse, thanks, you caught the point!
I am searching now about mast cells, since I found “massive presence of mast cells” in my urinary tract after biopsies since 2014. Hope I can find something more about this condition.

And then yes, I took fluoroquinone antibiotics, the last ones in 2019. I will ask my doctors, because I was thinking they worsened my fatigue, and you seem to confirm it ... because I still risk to use them again in the future (hope I will not need them anymore).

Thank you by heart!
 
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Dear @sunshine44, I am really sorry for this and for all you’re symptomps.
I don’t know if I can help in some way ... but I will give you suggestions from my own experience, although I am not a doctor.
1. If your infection is bacterial, it may have created a biofilm in your urethra or bladder. It makes bacteria resistant to antibiotics, for example I needed to use Fluimucil and other things to get rid of that biofilm. This could explain why they keep coming back ...
2. If you have irritative symptomps, such as dysuria, urethrodynia, urgency, frequency, tenesmus, ... they could be linked to inflammation and infection, but also to neuropathy. If you suspect to have infection like UTIs, I suggest you to ask to an urologist, because you will need to take antibiotics, integrators, ...
3. If you are a woman, the situation is much more simple in urinary terms. If you are a man, it is possible that bacteria or similar agents hide in your seminal tract, which is connected to urethra, or - like me - in the urethra itself (which is really long and contains several glands). There are specific exams to know it.
4. Bowel problems are likely to cause UTIs (especially in women) and worsen urethral or bladder symptomps.

I don’t know about Lyme disease, but I heard it can be linked to urinary and neurological issues ... or both together, i.e. pudendal neuropathy. However, I am not a doctor.

I really hope you will get better soon, a big big hug!
 
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I am searching now about mast cells, since I found “massive presence of mast cells” in my urinary tract after biopsies since 2014. Hope I can find something more about this condition.
The book "Never Bet Against Occam" by Afrin is a good starting place to learn about different presentations of Mast Cell disease.

This is a decent lecture on Mast Cells from the 2018 Invest In ME Conference

Fluoroquinolones are known to cause damage such as tendinopathy and neuropathy (FDA notices) although the mechanism is unknown, and Robert Naviaux a mitochondrial disease researcher who is involved in ME research as well mentions their toxcicity to mitochondria
https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/
 
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Dear @wigglethemouse, thank you very much.
I will watch it and also suggest it to a friend on this forum, who could have mast cell problems.
Also thanks again for the information about floroquinones, because if they are linked with neuropathy, I can simply ask my doctors if I have alternatives, in case I need them again.
A hug!
 

percyval577

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@Lord Randal If your urinary problems involve the arginase, then I would say from my interpretation of my ME, yes, it could be possible.

The triggers of my ME have obviously been in a first step borrelia, and later EBV. Both may induce actions from manganese, which then would be too much action. In this post (and the two around it) I have tried an explanation.
 

percyval577

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@Lord Randal I don´t know if the enzyme can be bought, and never tested it anyway, but it could be a good idea in the respect I was pointing to, as it would diminish the need to release manganese into the blood stream (if the consideration I did applies).

Having said that, I am improving from a low manganese diet.

I currently don´t know how the arginase is linked to the urea cycle, I thought there was a link ... and thought I only forgot the details, but there might not be one at all? Hope I didn´t mislead anyone.