Fibromyalgia and Interstitial Cystitis

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Oct 28, 2010.

  1. Does anyone with fibro also suffer with Interstitial Cystitis or bladder problems? I do and I think they are part of fibro? It is miserable. One dr. says IC and another over active bladder. If you have this problem... what do you do for it?
  2. AllWXRider

    AllWXRider New Member

    My favorite "joke" commericial...bladder urges come from the brain, the one in the head. When my CFS is worse, my bladder urges are higher. There is a correlation all right.

    RX drugs are not the answer. I depise the idea of drugging our brains.

    What helps me is keeping up with all my detox herbs and supplements: Milk thistle, fiber for the colon (hepato-entero loop), burbur (, a lymphatic detox), N Acetyl Cysteine (makes glutathione in the liver), lots of filtered water.

    I like dandelion root tea.

    The urges go down when I keep up with it.
  3. loto

    loto Member

    I've had 2 different doctors say the VERY SAME THING!!
    When I started having bladder pain and everything else, my regular doc sent me to a urologist.
    The urologist didn't do many tests, just took down my history first, and then proclaimed overactive bladder and put me on Vesicare.

    A few months ago, I went to my gyno because I was having what I thought was ovary pain. He did an exam (that hurt so bad!!) and figured out it is my bladder that was causing the pain (i went for pain during intercourse).
    He left the room and came back in and handed me the brochure about IC. The brochure even says most people that have IC have Fibromyalgia.
    Makes sense! He prescribed me Urelle.

    I chose to go back on the Vesicare, because I only have to take 1 tablet a day with that, as opposed to taking up to 4 a day of the Urelle.

    The vesicare does work. I've had no other bladder pain since staying on it regularly.
    So, google IC and read all about it!! Just another thing us FMer's have to deal with, and just another med we have to take!

  4. I had some samples of vesicare and started them and it seemed to help BUT of course my insurance which we pay a HIGH HIGH premium for won't let me take it and they gave me another generic which is not helping like the vesicare does. I have an appt with the urologist dr in 2 1/2 wks. Theres always something I swear.

    I took a vicodin and it did help . I dread as I know he will want to scope my bladder and do whatever tests he does, and those are miserable , so uncomfortable. It ends up he gives me a vesicare type pill anyways. I go through this pain every once in awhile, then it calms down for a bit. The problem is these pills seem to bloat me so bad. ahhhhh! I am so tired of all these problems!

    I hate fibro and all it entails and it is ALOT!
  5. Nanie46

    Nanie46 Moderator


    IC is likely another symptom of a chronic widespread infection such as Borreliosis.

    pages 9-11...

    Muscle pain+stiffness+irritable bladder/bladder dysfunction+fatigue+sleep problems= Chronic Borrelia infection
  6. kch64

    kch64 New Member

    Hi. I was diagnosed with IC way before I got a diagnosis of Fibro. It's very painful. Your pelvic area hurts and it hurts to pee.

    What helps most is diet. Also, stay away from acidic drinks and caffeine.

    If you get bad pain, take one level teaspoon of baking soda to 16 oz of water and drink it (if you don't have high blood pressure). It will alkalize the urine very quickly. It really helps the pain. Once you stay off of the acidic foods (tomatoes, sour cream, juices, coffee, soda, aspartame/nutrasweet,) you will start to feel better.

    It takes a long time, so don't be impatient.
  7. I get this on and off and I really feel like I will lose my mind, it burns so bad. I do have high blood pressure and take a pill to control it. So will it hurt to take the baking soda and water? I am going crazy! I took vesicare but today the burning is off the charts. I keep drinking water to flush my bladder out but OMG! I had some apple cider, I wonder if that set if off! I gave up coke and caffeine free coke. Don't eat spicy or tomatoes, no coffee or nutrasweet.
  8. ilovepink4

    ilovepink4 Member

    This could explain why i always feel like i have to pee....and some of my meds make me pee and pee...

    and every year or two, i get raging bladder infections, with no symptoms until it is hurting my kidneys...the doc always is surprised how high my white count is ....

    i need to read up on this because this sounds like me...i have a bad habit of holding my pee...putting off getting up again to go....i am bed bound/ and hate ge tting up again and again...

    i am glad you posted this!
  9. lisadot

    lisadot New Member

    I have both. I was diagnosed with IC last...although I knew I had it. I knew I had the fibro as well, but it took having gallbladder surgery, nurses who ignored my ins and outa (IV fluids going into my body and what I was peeing out), and a horrible post-surgery urinary tract infection to make me get the IC diagnosis. I swear my bladder nearly burst because I was struggling to get myself out of bed after surgery and then the anesthesia made it a bit tough for me to urinate.

    A lot of things seem to coexist with fibro. That's why a a national fibro organization is looking into the hows and whys of it all. IC, vulvodynia, IBS, allergies, restless legs, migraines, etc., etc.

    I took elmiron for IC for years. It helped a lot. Avoiding eating pickles seemed to help as well. Something about high levels of potassium in certain foods really can get to sufferers. I've been through instillations in my bladder as well. IC really hurts. It hurts in a way different than fibro - more urgently to me, in my humble opinion. For years I was told nothing was wrong with me...wrong :eek:(

    Doctors don't know everything. Specialists know their niche, and you are left to figure the rest out on your own. Not fun. Feeling sorta cynical here today...
  10. kch64

    kch64 New Member

    OUCH! yes you did the wrong thing (not being mean) (grin). Try the baking soda. Also my urologist that diagnosed me told me to chew TUMS. It helps the alkaline. Vinegar is a strong acid. Don't drink it or cranberry juice. I don't think the baking soda is going to hurt you if you use it only when it's very bad pain. Your bladder isn't infected it's only irritated, but the irritation can be very bad. Anything acidic is like pouring acid over a burn. Thats why diet is important.

    Hang in there, that pain is terrible. I know. Big hugs and let me know if you feel better after the baking soda.

    It will work fast.

    [This Message was Edited on 11/01/2010]
  11. not apple cider vinegar, but cider made from apples, would that irritate? I LOVE IT as we have an orchards not far from us and it is soo good. What about caffeine free coke? Is all pop/soda bad for the bladder?
  12. well my urologist said he has heard that tums help also, and said to try it. I wonder how many are safe to take?
  13. sadie8milk

    sadie8milk New Member

    i just posted tonight that i am going thru a series of testing because i feel miserable. over a month ago, i started having bladder issues & my doc now wants to test me for interstitial cystitis. all of my blood tests have come back negative & they can't figure out what is going on with me. i have joint pain, muscle pain, head & jaw pain. i asked them about FM & they don't think so. i was online researching FM when i came across symptoms of FM: IC is part of that! i am on prosed DS right now to help me with the bladder issue until i get the IC testing down (which is next week). ask your doctor about this. i was told i will have a catheter inserted and my bladder filled to see what it will feel like. the response the doctor gets from you while the procedure is being down will determine if you have IC. a bit strange if you ask me, but that is how they test it here.

    by the way - the prosed is a great relief. i don't have any burning or constant need to urinate. what are your bladder symptoms? i also changed my diet so now i don't need as many doses of the prosed. keep me posted.