Urinary symptoms, anyone? [ME/CFS]

Do you have an increase of urinary symptoms with your ME/CFS

  • No

    Votes: 1 5.6%
  • Yes, (chronic) retention

    Votes: 8 44.4%
  • Yes, pain

    Votes: 4 22.2%
  • Yes, peeing frequency increased

    Votes: 11 61.1%
  • Yes, some other symptom

    Votes: 8 44.4%
  • You honestly expect me to know?

    Votes: 0 0.0%
  • Yes, interstitial cystitis diagnosed/strongly suspected

    Votes: 5 27.8%
  • Yes, frequent UTI/infections

    Votes: 5 27.8%

  • Total voters
    18

ShyestofFlies

Well-Known Member
From your kidneys, ureters, bladder, and beyond- What's ME/CFS doing to your ability to pee?


If you're having urinary symptoms, feel free to answer what you're comfortable with:
* New with or after ME/CFS onset?
* How troublesome or severe?
* How often?
* Seeking treatment? Who- PCP/GP, specialist, urologist, urogyn, etc.
* Anything identified as a trigger-cause?
* Anything working to treat it?


Warning: If you are unable to pee at all for a significant amount of time [24-48 hours] (acute retention) you should contact your doctor and determine if emergency care is needed.
 

weyland

Well-Known Member
Definitely had the noted frequent urination in the beginning but antivirals have mostly cured that. Comes back slightly when I overexert myself. Additionally, incidence of kidney stones increased profusely. Not sure whether to attribute this to the disease itself or just a consequence of immobilization. My internist says my kidney function, while completely in the normal range, is not normal for someone my age, but he couldn't really attribute that to anything specifically.
 

Merida

Well-Known Member
It took me years to get this bladder situation evaluated. I always had frequent infections. Immediately following the neck/ pelvis injury in 1998 I totally lost my bladder sensations for a while, had a terrible time emptying. Then severe frequency. Now, a variety of issues.

Here is what was found: rectocele, enterocele, borderline cystocele. In other words, collapse of the pelvic floor. Could be common in hyper mobile folks? Finally had the definitive studies at a university medical center. Also, I have a very redundant sigmoid colon which can press on the bladder.

Also, finally I had very sophisticated urodynamic studies in conjunction with a knowledgeable neurosurgeon - flew out of state. Two previous urodynamic studies locally were s - - - and worthless. Diagnosis : lower motor neuron bladder with a small upper motor neuron component. Consistent with tethered cord syndrome.

The best therapy has been directed at the pelvic floor - with a PT specialist. Also, acupuncture may help with the neuro part.

It is very important to appreciate that structural issues can be the source of physical and neurological bladder symptoms. Bladder problems are a classic symptom tethered cord syndrome - sometimes the only symptom. Does this apply to anyone but me ? Well, check out the peer reviewed study from Italy that found a short filum terminale in fibro patients.

The short filum confers less elasticity and can put more tension right on the end of the spinal cord. Bladder problems are characteristic of this tension. Also, the filum is attached in the sacrum, so rotation or dropping of the sacrum can aggravate the problem.

If you want to know where I had this work done, message me. If you have problem sitting and have hip pain, you may want to address the dysfunctional sacrum. One expert is Jerry Hesch in Aurora Colorado. Sacral dysfunction can not be imaged and 99.99 percent of practitioners can not diagnose or correct the problem.
 
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Merida

Well-Known Member
Having said all of that, my son developed sudden SEVERE urinary frequency 2 weeks after his well documented EBV infection - age 5. The virus hit some part of his nervous system.
 

Ladyliegh

Active Member
Lol, I have very few simple answers, I had a few bladder infections when I was young. Was fine until I had a DNC at a teaching hospital, woke up in extreme pain, the balloon was in the urethra tube. It took me a year to pee normally, without pain. Since then, for about 10 yrs. it is kidney stones now. What an adventure they are...
So yes I get infections periodically.
 

tearydawn

Active Member
After joining the military, had all the vaccinations, my health began it's long decent. I had frequent bladder infections and increased frequency that has only gotten worse with time. I developed pain in my bladder and could not fill more than half way without significant pain and spasms. Finally got diagnosed with IC many years later. Last year had my first hydrodistillation and DSMO treatment. It reduced my frequency by two weeks and then went back to normal frequent urination. Bladder pain got better though until recently and I have another surgery scheduled for next month. I was diagnosed with CFS last year. I have had very minor bouts of it over the last 16 years in comparison to what I am dealing with now. I'm housebound now and can only get up and move after taking oxycodone. So not sure if they are related or not, but yes, both have gotten worse with time.
 

Merida

Well-Known Member
@tearydawn
Hope you have had some improvement by now. My son was diagnosed with IC at age 6 after a terrible Epstein Barr infection. He was peeing 40 times a day. Eventually ( years) he got better. I also have many bladder problems, as in above explanation.

The vaccine causation is interesting. I heard this from several nurses in my support group - it was the Hep B vaccine. The problem I see with vaccines is that they may be contaminated with unknown viruses. Case in point : The rotavirus vaccine given to babies was found to be contaminated with DNA from a pig circovirus, which is an immunosupressive virus that can be fatal to pigs. The rotavirus vaccine was initially recalled by the FDA. ( about 2010?? ) However, the vaccine was then determined to be 'safe' and re-released with the circovirus DNA in it. Crazy !

There is a great video on You Tube of an interview with Maurice Hilleman, former head of Merck vaccine division, discussing the problem of undetectable viruses in the early polio vaccines of the 1950s. SV 40 was in these vaccines and a whole bunch of us got it.

Do you know about the drug Elmiron? Also, a dilute baking Soda solution helped my son. Also, he drank a 1/2 gallon of milk every 2 days.
Dr. Paul St. Amand thinks many bladder problems occur in this group because we are secreting small sharp crystals in our urine. Guaifenesin is supposed to help. He may have something there. My son's urine had a pH of around 8 after this viral infection. On occasion I saw that the toilet was filled with crystals of some sort. Very strange, and the urologists mentioned an alkaline tide - whatever that is. But he had NEVER had anything like this prior to the big Epstein Barr infection. So what did this virus do to cause this.

You can get some ph paper for urine at the pharmacy. It might be interesting to check the ph frequently.

So sorry you are going through this.
 

Not dead yet!

Well-Known Member
I recently was the caregiver for an elderly lady. They are interesting in relation to the bladder issues because as some women age, they get dementia when they have a bladder infection. Some of the nursing services I used said we had to watch out for her because they knew of several women who ended up perfectly sane and functional in a nursing home because they had a temporary dementia due to UTI, then they were admitted, and then they recovered and thought... how did I get here?

This lady's history was that she always took large amounts of cranberry supplements because otherwise she'd have almost constant UTI's. Then during such an episode, she was admitted to a nursing home, and they stopped all supplements (that's abusive in itself) and then while she was delirious, they claimed they couldn't get a "sample" so she was never treated for UTI.

Anyway that was when I stepped in. I may be sick, but I will not turn my back on a suffering person.

I have to wonder if she originally got it long ago from a vaccine, and then with the neglect of self-care (forced on her) and forced yearly flu+more shots (I got the records so I could see she got flu shots, pneumonia shots, tetanus shots... if there was a shot, she got it), it reactivated it with a vengeance. Also it's complicated by uterine prolapse now, so they should've been more careful.

She can only go a few months now until she has to take the next course of medications to get rid of another UTI. She's developing allergies to antibacterials as her body fights back against the chemical assault.

She lives with her extended family now, and I'm loath to meddle, but I have this urge to say, "y'know, she's kind of old to be getting shots, who cares at her age?"
 

Not dead yet!

Well-Known Member
From your kidneys, ureters, bladder, and beyond- What's ME/CFS doing to your ability to pee?


If you're having urinary symptoms, feel free to answer what you're comfortable with:
* New with or after ME/CFS onset?
* How troublesome or severe?
* How often?
* Seeking treatment? Who- PCP/GP, specialist, urologist, urogyn, etc.
* Anything identified as a trigger-cause?
* Anything working to treat it?


Warning: If you are unable to pee at all for a significant amount of time [24-48 hours] (acute retention) you should contact your doctor and determine if emergency care is needed.

Bladder issues I have are ongoing due to hydronephrosis that wasn't diagnosed / fixed for nearly two years when I was a child.

When I started getting migraines (around age 22) I started to notice retention before the migraine coalesced, and then once I could pee again, the migraine would recede. That part of it is extremely severe.

Other than that one trigger, I haven't sought care.. however the odd thing is, nobody's ever wanted to do anything for it.

If I see a gyno they ask only if I have "frequency" which is always "no." If I volunteer the info, they look at me blankly and change the subject. I'm not impressed with them overall. I do want to see a urologist, if for nothing else than checking on my kidneys since it seems I sometimes have kidney pain.

I noticed that the NAC I was taking for energy/ros reduction has stopped most of my kidney pain though.
 

tearydawn

Active Member
Well, alone with this illness, I had multiple UTI's early on. I then developed UC and a neurogenic bladder. Have had two surgeries with little success and can't take the medications for it. Frequency averages 30 times a day. Sometimes, especially at night or when cold or anxiety, I can go every 5 minutes! Definitely limits my life along with everything else I go through.
 
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Merida

Well-Known Member
@weyland
Thank you for sharing this interesting info. I don't know about tubular acidosis, or what causes it. But this may be a very important indication of what this virus is doing to cause fatigue.

@Not dead yet! and @tearydawn - very interesting comments - will write more later as I am collapsing.
 

Tammy7

Well-Known Member
Took care of my IC with clean diet and herbs. I had to stay away from all grains including Gluten Free until I healed. I also stayed away from dairy, eggs, sugar....(except raw honey). I took oregano oil, goldenseal (2 weeks on, 2 weeks off), garlic, thyme, Soveriegn silver, lemon balm.
 

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