CFS and Bladder Problems anyone?

Thanks for taking the time to write.  I had no idea if bladder problems showed up with ME/CFS.  Is there ANYTHING this darned disease doesn't foul  up in our systems?  Anything?  :-)

 

Hi Phillis.

Yes, some ppl. have frequency, others have full blown ''Interstitial Cystitus'' (IC) - constant (unberable) burning urethral/bladder pain with frequency.  sometimes I spend all night in the ''Wee House''. I've been put on ''Vesicare'' - a drug with lots and severe side effects. my choices were to live in the ''Wee House'' or take the drug. I opted for the latter with reasonable effect and the side effects are showing......eye sight diminishing by the day, but living in the ''Wee House'' would drive me crazy with all the other effects of ME/CFS.   

Thanks for the input.  It is reassuring to be able to pin this extra discomfort down to something--even if it is the same old same old.  Thanks.

Amitriptyline worked backwards for me when it was prescribed to help with CFS sleep problems.  But then, most drugs seem to work backwards for me.  I appreciate your reminding me that CFS reallly is a disorder of the nervous system and the brain.  Twenty years ago the family physician I had at the time (and wish he hadn't retired) commented that he was sure that eventually "they" would agree that CFS was a brain-nervous system problem.  I think he has been proved correct, and I needed reminding of this.  Thank  you.

Hi Phillis.

that's interesting.  I was put on Nortriptyline  10 mgs (a newer generation of the Amitriptyline group of drugs)to  incrementally bring it up to 40 mgs. That's  for Costochondritis (another inflammatory nerve condition associated with ME/CFS). It also helps with my Interstitical Cystitis (IC) but isn't enough to control the urethral & Bladder pain and the frequency,so I was put on  ''Vesicare''as well for that.  However, it didn't  touch my insomnia ''Circadian Rythm Disruption''?

Phillis what do u mean that it works backwards for you?

Instead of helping me sleep, even a quarter of a small dose of amitriiptyline kept me awake.  Benadryl, for instance, also keeps me awake.  I have nasty reactions to most antibiotics.  Ever since CFS, I just don't do well with drugs exept thyroid medication and hydrochlorothiazide for blood pressure.  The diltiazem ER I have to take for atrial flutter also messes up my sleep.  That's what I meant...meds don't work for me the way they are supposed to.

 

How interesting?  so do u have Circadian Rhythm Disruption as well? or is it just insomnia.  I know of someone with ME/CFS that Melatoinin works ''backwards'' for i.e. it wakes her up as it does  me?? I wonder if  in energy terms, if your energy circuits are reversed?

C

I can't use melatonin either.  I don't know if my energy circuits are reversed.  Is that what you mean by circadian Rhythm Disruption?  Sounds like it.  However, I go to sleep fairly easily and sleep for a couple of hours.  Then I wake.  Usually I can get back to sleep in an hour or so for another hour or two.  Then, that's often it for the night.  I get to sleep by 10: something and wake at 1: something; then back to sleep at 2:something and wake for good at four:something.  Once in a while I'll sleep until five.  

Hi Phillis. 

That indeed, is an unusual phenomenon Phillis?  has the GP thrown any light on your  reverse medication patterns. your sleep seems rather broken too, so most likely you are not getting the right amount of the necessary ''deep'' sleep phase of sleep where the body is repaired & recharged.

the low tollerance to meds. & the reactions to them, is very much an ME/CFS phenomenon. Us ME ppl. tend to be so sensitive to our environment, to what we ingest and toxins we come in contact with. 

In respect of the The Circadian rhythm disorders: these  are disruptions in a person's circadian rhythm -- a name given to the "internal body clock" that regulates the (approximately) 24-hour cycle of biological processes. so in lay mans term, our bodies can't stay awake during the day and can't get to sleep at night - back-to-front sleeping rhythm lol?

in respect of the energy polarities, I was thinking in terms of Chineese Medicine - the Acupuncture aspect of  Chineese Medicine. I've had a few tweaks here and there with Acupuncture points  in The ''Touch For Health'' modality that can help a liitle all night insomnia. 

My current doctor has been no  help.  I have tried acupuncture several times.  It works well for some things, but not for sleep---at least it didn't for me.

Thanks for replying.  I am giving up and just managing a day at a time.  If something else pops into my head, I'll be back on line asking for feedback.

Hi Phillis.

I'm wondering if you have tried all the ''natural'' stuff on the market i.e.: Night Nurse, Valerian, Cherry Juice etc.  if you have access to the internet, you could have a look there. I have a few other (non conventional approaches) but the site doesn't allow anything other than the conventional approaches.

Also, wondering, if you've done the ''routine'' approach i.e. sticking to a bedtime routine i.e.  going to bed at the same times each night.  Our natural rhythms seem to give us two evening/night time dips i.e. circa 18.30 hrs, and again 23.00 hrs.  everybody will have a variance with theses times. but it good to opportunize on these sleepy dips.

If you can  ''Private'' e-mail me, I can pass on that information

C

Have tried valerian.  The "routine" approach has been my approach for years, Caitlin.  Saw the doc yesterday.  He will run a culture to check for infection.