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  • pain=depressing

    ive never felt this much pain in my life even with pain meds this type of pain is so hard to bear. i try to rest through the worst parts of it.i'm thinking about maybe seeing a pain management dr and trying out some physical therapy since a therapist is the only person listed under my town on this website who deals with IC.it was sad tonight i was running out of percoset so i decided to just try a few motrin like my dr had suggested before.didnt cut the pain and actually somehow made it worse. i figure pain management docs wont be as hesistant to give out the pain meds or some sort of relief because thats their speciality.uros and gynos sometimes are hesistant to give out pmeds and im wondering what mine is going to say when i ask for a refill cuz ive went through these pretty quickly cuz im not used to this type of pain. we will see.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    tramadol-allergic
    DMSO treatments(5-6)
    probiotics

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    Add me on facebook Angela Hasic

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

  • #2
    Motrin

    Hello,

    Sorry I was reading your post and trust me, I understand the pain. It is so intolerable at times all you want to do is lay down and just cry.

    I noticed you said you took motrin and it made things worse. Motrin, which is ibuprofen. Many people with IC are VERY SENSITIVE to ibuprofen. I had a really bad flare one time, and could not pin down what was different, but realized I had taken ibuprofen. It was something I had not taken in 2 years because of being on Elmiron (which is a slight blood thinner similar in some ways to heparin).

    I just wanted you to know that ibuprofen (motrin, advil or whatever name brand it goes by) can cause flares.

    I'm going through a tough flare/doctor/pain/everything time. No fun at all. Hope you are doing better.

    Erin
    24 year old Ph.D student in Organic Chemistry

    Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

    My blog (just started):

    http://imaginenoworries.blogspot.com/

    Medications:
    Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
    Cymbalta 60mg
    Gabapentin (Neurontin) (3200mg/day)
    Zyrtec 10mg
    Xanax 0.5mg up to 3 times a day(spasms, anxiety)
    Uribel
    Macrobid 100mg (only on days when doing an instill)
    Albuterol
    Yaz Birth Control (3 months on birth control, then period)
    Pelvic floor therapy
    Valium 5 mg (inserted vaginally)
    MScontin 30 mg (3 times a day)
    Percocet 10/325mg (every 6 hours)
    TENS Therapy, CVS machine, 30 minutes once or twice a day
    Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

    *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

    Instill:

    Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

    Used to do these:

    Solu-Cortef (act-o-vial) 100 mg: 2 mL
    Marcaine (bupivicaine) 0.5 % 25 mL
    20,000 units Heparin
    3 mL sodium bicarbonate

    Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

    Comment


    • #3
      thanks erin.. i eventually figured that out about the motrin through trial and error. however, aleve doesnt seem to bother me..probably because of the anti-inflammatory effects. i'm sticking with my percosets as long as my dr will keep prescribing them until we can find something better. i have been feeling better lately, not as much pain the elmiron may be working as well as sticking to the ic diet. hope you feel better soon!
      Newly IC diagnosed as of February 2011.

      Medications I'm on that seem to work:
      Zoloft- one once a day
      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

      Failed Meds:
      Elmiron-after 4 months,digestive side effects got to be too much
      tramadol-allergic
      DMSO treatments(5-6)
      probiotics

      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
      AROMATHERAPY-candles,incense
      Village Naturals Aches and Pains Peppermint Bath Salts
      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

      ACUPUNCTURE/HERBS
      Significant pain relief so far.

      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

      Add me on facebook Angela Hasic

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Lord, make me an instrument of your peace;
      where there is hatred, let me sow love;
      when there is injury, pardon;
      where there is doubt, faith;
      where there is despair, hope;
      where there is darkness, light;
      and where there is sadness, joy.
      Grant that I may not so much seek
      to be consoled as to console;
      to be understood, as to understand,
      to be loved as to love;
      for it is in giving that we receive,
      it is in pardoning that we are pardoned,
      and it is in dying [to ourselves] that we are born to eternal life.

      Comment


      • #4
        Originally posted by ermkenne View Post
        Hello,
        It was something I had not taken in 2 years because of being on Elmiron (which is a slight blood thinner similar in some ways to heparin).
        I just wanted you to know that ibuprofen (motrin, advil or whatever name brand it goes by) can cause flares.
        Erin
        Hi, I'm ok with aleve (naproxen) too. I usually take prelief with it just to be safe though.

        Wanted to mention that the blood thinning effects of elmiron in capsule form is super miniscule. The studies that show it as a blood thinner were on the IV form of the medicine used in hospitals. My doctor told me its fine to take NSAIDs with it like aleve.
        Check with your pharmacist or doctor to see what they say but just wanted to mention thats what I was told.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment

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