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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.
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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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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.
Erin24 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.' -
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
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Hi, I'm ok with aleve (naproxen) too. I usually take prelief with it just to be safe though.Originally posted by ermkenne View Post
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 pdfComment
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