Fibro and bladder problems?

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Jul 23, 2009.

  1. about once a yr I feel like I have a bladder infection, but it shows ok. I have burning pain in the bladder area and urethra. I have had cystoscopy before, yrs ago it showed inflammation and interstital cystitis. since then they say no I don't have it, but no answers and give me vesicare. sometimes it helps, sometimes not. . I just feel like someone poured bleach in my bladder and urethra.OMG! anyone else have this problem, if so what helps? My family dr gives me pills that numb the bladder but urologists dont like them taken but three days then off. But I take them as its soo painful without. HELP!

    I hate to go through the painful, uncomfortable testing again. any suggestions or ideas?
    [This Message was Edited on 07/23/2009]
  2. SnooZQ

    SnooZQ New Member

    My bladder problem may not be as severe as yours, however I have made wonderful progress, from being up as often as every 20 min, all night long, to pee, during flares. Usually up 7 - 11 times. I know that burning feeling well. Vesicare didn't help my bladder enough to warrant continuation & caused side effects.

    For the past 7 mos I am up 1 - 2 times/night, max. Even in mild fibro flares.

    What has helped me: topical estrogen (Estrace cream) helps thicken bladder lining. Dietary monitoring & avoidance of offending foods -- for me, that was caffeine & acids in any form, incl. supps & fruit juices. But the biggest help by far has been a supp called Cystoprotek, which helps to rebuild the bladder lining.

    I highly recommend the book, Solving the Interstitial Cystitis Puzzle, by Amrit Willis, RN. It has over 300 pages of self-help ideas to reduce your pain & suffering.

    Best wishes.
  3. TeaBisqit

    TeaBisqit Member

    I have had problems with irritated bladder. I traced it to two things, aspartame and yogurt. Aspartame makes me feel like I have a terrible bladder infection and it lasts for hours. Yogurt irritates my bladder for days. Since I cut both out of my diet, I rarely have anything like that anymore. It's a million times better. Decaf coffee and decaf tea will also do me in for days. I try to avoid them, as well.
  4. jasminetee

    jasminetee Member

    Tea- it's interesting to hear that yogurt sets you off. I eat a lot of yogurt. I'll have to pay attention and see if it's causing me this problem.

    I've found that I have to stay away from all soda. I drink juice with mineral water and that seems ok.

    Yes, I think FMS causes bladder and urinary tract irritation. It affects all the tissues of our bodies.
  5. Bluebottle

    Bluebottle New Member

    I have the bladder problems you describe & nothing helps. I only drink water at room temperature & avoid all foods that might irritate. What are the tablets that numb the bladder please?

    There is an excellent forum called IC Network run by nurses

  6. jasminetee

    jasminetee Member

    I paid attention yesterday and I had no problem with yogurt. Of course, sometimes a food can set us off and other times it can be OK. Oh, the joys of ME.

  7. pyridium is the name of the numbing bladder pill, (mine is a generic( it turns your urine bright yellow and is a mess. it is made to use a couple days but my dr said as long as you make sure its not an infection its ok. the urologist says to use it a couple days on and then off? uristat is otc but doesn't work as well for me. sometimes the other doesn't either, I think it depends on the maker and age of it?

    forgot to add Fantastik spray cleans the yellow pretty good without getting the toilet brush out each time.

    mine started I think when I ate taco salad for a couple days. it is miserable. I push water water water.
    [This Message was Edited on 07/27/2009]
  8. has anyone heard of CystoProtek ? I found it googling and it sounds interesting but does it really help?
  9. LadyEowyn

    LadyEowyn New Member

    I've experience bladder problems also. I don't have any definite solutions for you..sorry..
    for some relief, temporary...I use a suggestion from a urologist and helps a little... mix 2 tbs olive oil
    1 tbs lemon juice
    can use 3 times a day
    I am pretty small...and use 1 tsp olive oil, and 1/2 tsp lemon will make you pee!!!..
    but does ease the pain a little....and it's flavor is intense!!..use for 2-3 days to see how you tolerate it...then, if it helps...use it 3 days in a row every month...
  10. LEMON JUICE OMG that seems like it would make matters worse with the burning. You say a urologist told you that mixture to help~?
  11. Shananegans

    Shananegans New Member

    My guess would be a food intolerance of some sort also.

    Question, have you ever been diagnosed with Crohn's disease? Although Crohn's affects the intestine I have read that it can cause ulcers on the bladder and the surrounding areas?

    Not sure if this is any where near an answer, I was just curious because of what I had read so I thought I'd mention it. I hope you find relief. I get repeated UTI's and I know how annoying and frustrating bladder issues can be.

  12. hensue

    hensue New Member

    I was going back and forth from a urologist to my gynecologist. I was having bladder spasms and no infection. Now after a hysterectomy 11 years later. When I have a flare and if I have been eating a lot of sugar I have terrible burning. Even without the sugar I still have it. I have to keep my ph balance right, drink water and a little lemon juice just a little. I have had pyridium, you name it. The only thing that calms it down is a peice of valuim or klonopin.
    It seems to calm the nerves in my bladder the burning is still there it is just tolerable.

    This is why I went to see a neruologist after every doc said I had classic case of fibromyalgia.
    The nerves are so screwed up. If I overdo and can count on a flare.

    Good luck
    I think it is part of fibro!!

  13. hensue

    hensue New Member

    Since even estrogen causes a flare. The cysto thing someone was talking about sounds like a good idea. i have even used a fish oil and inserted in vagina. Sounds so gross not full relief but helps some. Anything, to calm it down it is horrible.

  14. hensue

    hensue New Member

    Since even estrogen causes a flare. The cysto thing someone was talking about sounds like a good idea. i have even used a fish oil and inserted in vagina. Sounds so gross not full relief but helps some. Anything, to calm it down it is horrible.

  15. LadyEowyn

    LadyEowyn New Member

    I know it sounds odd...this mixture is used by urologist to aid in breaking up and passing small kidney stones..the olive oil prevents it from irritating stomach, bladder. We all react differently, but I have tried it in small doses( usually the 1tsp lemon juice, 1/2tsp olive oil)...and it does seems to soothe the bladder tissue..actually, my bladder seems better after using a couple of days in a row. I also have gastritis, so I am very careful what goes in the tummy!..It's not a preventive, just a short term aid. Of course, we all know to drink plenty of water and avoid the soda!!!(for some, even carbonated drinks of any kind might be irritating).
    Hope you're feeling better soon.
  16. jasminetee

    jasminetee Member

    Oh yeah, I drink lemon in water or eat lemons all the time and that really helps. Lemons are very acidic but they alkalinize the body when ingested. Same with Limes. I see on the chart that's down the middle of the page I posted below that olive oil is very alkanlinizing in the body as well.

    "Note that a food's acid or alkaline-forming tendency in the body has nothing to do with the actual pH of the food itself. For example, lemons are very acidic, however the end-products they produce after digestion and assimilation are very alkaline so lemons are alkaline-forming in the body. Likewise, meat will test alkaline before digestion but it leaves very acidic residue in the body so, like nearly all animal products, meat is very acid-forming."
    [This Message was Edited on 07/28/2009]
  17. one thing my family dr told me (a woman) wearing a pad or liner can irritate the urethra and I have had that it burns like all get out for wks. I think mine is spicy foods. One day of spicy foods is a mo or wks of burning pain. thankk goodness for pryidium and vicodin.

    I wonder if men get this?
  18. SnooZQ

    SnooZQ New Member

    I've found this supp to be very helpful. It's rec that you take 4 per day however I have a very sensitive gut & can only tolerate 1 per day. I started noticing a diff after about 2 weeks. Now that I've been on it about 8 mos. I get sloppy & sometimes forget it. If forget 3 days in a row, I really start to notice the bladder again.

    Wonderful to be sleeping through the night again instead of continually trekking to the can. I find I now also tolerate small amts of food that previously drove my bladder nuts.

    Apparently not everyone benefits from Cystoprotek. Just like with fibro, there can be diff causes of bladder pain/cystitis. If your bladder pain is partly because the protective lining of the bladder is thinning (making the nerve endings more exposed), then Cystoprotek is a good bet.

    I'm not on the payroll of the company, BUT! when I contacted them, they sent me a free sample. Perhaps others can benefit from that cost-saving tip.

    I would not use lemon juice myself, since I am highly reactive to citrus.

    The pH of urine in IC can vary. Some have already alkaline urine (which can also irritate the bladder) & some have very acidic urine (obviously corrosive).

    And then there's the theory that alkaline urine results from the body's attempt to alkalize acidic product from the kidney. That way some of us get burned twice.

    Some people are helped with the acid/alkaline theory, but not everyone responds & some people may worsen when implementing that idea.

    For a better explanation, ck out that book by Amrit Willis that I posted about earlier in this thread.

    Best wishes.

    [This Message was Edited on 07/29/2009]

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