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I was diagnosed with IC a month ago after being treated for six months with what I thought was recurrent UTIs. First Rst treatment today caused massive pain, had to leave work. Elmiron seems to help a bit, take three times a day. On top of this I have a pacemaker, low blood pressure, Tmj and elevated Epstein Barr. I am 33 and tired all the time as well as achy, some mornings I feel like I have been hit by truck, my mom has fibromyalgia so I am wondering if I have. Positives are I love my work, have supportive husband but need more support from those who have been through it.
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We all here understand what you are going through, lets pray for a cure soon. Are you sticking with the IC diet?
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It gets better!! I thought my life was over. Be patient with your body and treat it really well!! Most people on here find something that helps them survive the bad times and get back to whatever thier `normal`is
Good luck
28 yrs old,
I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again
I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC. 
What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!
Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!
Me in my graduation gown!
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Thanks for the words of encouragement
Thanks for the kind words, yes I am on IC diet but struggle with the no caffeine part, I find stress management and positive thinking help as I believe there is a direct correlation between mental and physical health, I utilize positive affirmations, focus on what I am grateful for as well deep breathing, aromatherapy and classical musicComment
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chicubs those are some excellent strategies i have used also.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
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***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
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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.
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Embarrassing question
Thanks, do you happen to know of a brand of sanitary napkin that tends to not be irritant for IC patient? My lastest challenge.....Comment
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Originally posted by Chicubs1 View Post
Hi there! I'm newly diagnosed with interstitial cystitis too! I have found I've gotten so much support on here and that's helped almost more than anything I hope you find some relief for your symptoms soon! I struggle every single day with the caffeine too believe me I'm having a very hard time getting up and going with my 3 year old without my morning coffee so just know you aren't alone!!! Again, welcome and I hope everything starts getting better for you soon
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Thanks for the support
Appreciate words of encouragement, I admire your enthusiasm and imagine your three year old is a big motivator for you to stay positive, gratitude for the blessing we have in life is invaluableComment
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