How many with Fibro and Interstitial Cystitis?

Discussion in 'Fibromyalgia Main Forum' started by chris350, Jul 11, 2009.

  1. chris350

    chris350 New Member

    I have Fibro and I/C - I believe the I/C is worse than the Fibro. I take:
    and Aloe Vera Juice for the I/C. Anyone get relief with anything else?
  2. Bluebottle

    Bluebottle New Member

    My IC rules my life, the pain and frequency stop me sleeping.

    Aloe vera juice is usually best avoided as too acidic for IC, although I understand that Desert Harvest aloe vera is recommended as it is non acidic (can't buy it here in the UK).
  3. GALynn

    GALynn New Member

    but I refused to take the elmiron because I didn't feel the IC was that bad and I am on so many other meds. I have been taking Aloe Vera Juice for my stomach upset and until I just read your post realized that my IC symptoms are practicly gone. The meds I take are
    Armour Thyroid
  4. TigerLilea

    TigerLilea Active Member

    Have you considered having a bladder distension done by your urologist? I had it done ten years ago and have been 95% improved since that time. I still have to be careful about what I eat and drink, however, even when I consume an offending food or drink, the symptoms are very mild and go away within a few days.
  5. SnooZQ

    SnooZQ New Member

    I find my bladder condition is much improved by avoidance of acidic foods & juices. Even small amounts of acids, like a few pickle slices, or more than 1/2 tsp. of salad dressing set off problems for me. I have to watch caffeine & tannins as well.

    Since last Nov. I've improved quite a bit due to dietary control as well as the addition of Cystoprotek supplement. Cystoprotek provides nutrients to help strengthen the bladder lining, which is often defective in IC. Thanks to Cystoprotek, I'm now able to tolerate small amts of juice, occasional weak tea, etc.

    Incidentally I found that dietary acids also increased my fibro pain, so the eliminating those was a win-win.

    One of the main problems with IC & fibro is when the IC interferes with sleep, as it did for me -- typically up 7 - 11 times per night to pee, and as often as 22 times. At its worst, the bladder prob necessitated a bedside commode. The lack of sleep increases fibro symptoms, which I think increases bladder sensitivity & you get caught in a negative spiral.

    People do vary in terms of what the triggers are for their IC. I highly recommend the book, Solving the Interstitial Cystitis Puzzle, by Amrit Willis, R.N. Willis has 300+ pages of tried & true advice for self-treatment of IC.

    Best wishes.
    [This Message was Edited on 07/12/2009]
  6. catlover51

    catlover51 New Member

    What is it and where can I get it. I did a search and only found it on Amazon. What are the ingrediants in Cystoprotek? Does it help with the burning?
  7. Sandyz

    Sandyz New Member

    I have had CFS/Fm for over 20 years and ICS for 5. I took the elmiron for several years, it did help some but not enough. I read on the ISC message boards that Glucosamine/MSM can work very much like the elmiron with out the side effects. It puts an artificial coating on the bladder that helps the pain and lets it heal. I started taking it about a year ago and my ISC improved greatly. I no longer take the elmiron and my ICS is in the mild stage. I eat most foods with little problems. I do stay away from citris most of the time. Also can`t take B vitamin because they really irritate the bladder.
  8. Dlebbole

    Dlebbole New Member

    My IC/pelvic pain got MUCH worse when I ingested foods with high oxalate levels. I suggest you google oxalates and try to eat a very low oxalate diet for 4 days and see if it makes a difference.

    I just checked aloe vera juice and it is on the "low oxalate" list, so you should be okay there. [This Message was Edited on 02/02/2010]
  9. loto

    loto Member

    I just went to see a urologist yesterday. Right before I left for my appt I saw this post, and googled I/C, and was so dumbfounded!
    I couldn't believe I read it right before the appt!
    So, the doctor confirmed what I thought-----I have Overactive Bladder Syndrome, which I'm assuming is pretty much the same as I/C?
    Anyway, what a coincidence to read about it the same day I finally found out what's been causing my problems. So, he gave me Vesicare samples to take for a couple weeks to see if it helps.
    And, another thing, I was told before somewhere on this board that Fibromyalgia does not worsen over time. That confuses me, because I'm now in my almost 2nd year of being diagnosed with FM, and every few months or so I have a new "problem" crop up because of this crazy "condition". So, to me, it IS progressing.
    So I now know that I have FM, and all these other things that are a part of it:
    Acid Reflux
    Overactive Bladder Syndrome
    Nerve Pain
    And now I just had a brain freeze and can't remember everything else that's wrong!

    So, my mother asked me last night why I have to take so many different meds. I told her because there's no 1 magic pill to deal with all the things FM affects. She tries to understand, but I guess unless you're living it, you just can't comprehend all that it does to a person.

    Anyone else find their FM is getting progressively worse???

  10. SnooZQ

    SnooZQ New Member

    If the Vesicare doesn't help enough or if the side effects get to you ...

    Get hold of the book, "Solving the Interstitial Cystitis Puzzle," by Amrit Willis. Perhaps your local library has or can obtain for you a copy.

    I realize that your dx is OAB, not IC. However I had an OAB dx & Vesicare did very little for me
    (decreased times up per night from 7 down to 6 ...) with many side effects. However I did very well with advice from Willis. I found my bladder is extremely sensitive to certain things. If I avoid them or don't overdo them, I'm in control.

    I've also found a supp that helped me a great deal, called CystoProtek. If you email company they may send you samples, as they did for me. After a time on CystoProtek (which rebuilds bladder lining) I am once again able to enjoy many foods & beverages in moderation, things that previously kept me running to the bathroom.

    As for the course of Fibro -- I think this is a highly individual thing. If you have underlying contributors that can be discovered & addressed, it's possible to make some progress. If one is just medicating symptoms without working on contributing factors, improvement is less common & if the contrib factors worsen, so does the fibro. Just IMO from my own experience, certainly not the traditional MD viewpt.

    Best wishes to you.
  11. JLH

    JLH New Member

    I have both conditions as well as a ton more serious problems.

    I have always taken Elmiron for the I/C. It has really helped me and I have never had any side effects from it.

    For the fibro, I take Cymbalta, Neurontin, and Zanaflex.

  12. loto

    loto Member

    When you took the vesicare, did it take a week or 2 to tell a difference? I understand you said it didn't do much for you, but my doctor said to give it a couple of weeks, and if it does help i have to call back and ask for a script.
    I just get so discouraged because once I get one thing under control another issue pops up to deal with.
    I will certainly do more research on this, and I greatly appreciate your advice!

  13. spacee

    spacee Member

    I had them for maybe 10 years. Bladder stretched 4 times (that did help for a while). All acidic
    foods and vitamins were a no no.

    Then I started taking NADH sold here. Two in the am on empty stomach with glass of water.
    It stopped my bladder woes. Have taken it for years. It has mannitol in it so I believe that is what helped. Mannitol is sold alone but not by PH.

  14. SnooZQ

    SnooZQ New Member

    I took the Vesicare for a couple weeks, then gave up as the side effects (severely dry eyes & mouth which I'm prone to anyway) didn't balance out with degree of improvement of bladder -- for me. Maybe it will help you enough to continue.

    The other thing to consider is a hormonal contributor. The bladder is very sensitive to estrogen deprivation, & if that is a contributor, using Estrace vag cream can help the bladder tissue.

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