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Bad Days are here again I need help
Well i had to come home from work today. The pain is really bad now taking .5 Xanex and 300 mg Elmoron 2x a times a day I confess i took 3 of the .25 tablets today and slept most of the day. I HAVE to take care of my family. I have barely enough energy to make dinner and do dishes I am VERY depressed and Can't get in to my Doc til Monday. This Flare is REALLY BAD, Since I only found out recently about this I always associated this as a "female problem" I just never really realized this was real! I am not crazy and my Gyno doesn't know much about it I think as getting pain meds from her is difficult I have to go see her. Not that she is incompassionate, but I don't think that she has extensive knowledge of the disease/condition not really sure how to classifiy it. Any way I will see her on Monday. You think I should call back tom and ask for pain meds? I mean by monday the flare could be gone? Should I just tough it out wit the ibuprofen? I feel like I am being a baby? Why is there so much guilty. I live my life in guilt from this? okay I have to stop now. At least now I KNOW what it is I just have to convince my docs for more aggressive treatment plan.
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Mia Sowell
Fort Worth, TX
2 Kids
Ethan (3)
April (17)
Husband Eric (Very Supportive)
Clinically Dxed 04-16-07
Symptoms Since 2004
Meds:
Elmoron 400mg 2x Day
Atarax 50mg 1x Day
Xanex .50mg 8 hrs As needed
Vicodin 5/500mg 4-6 hrs As needed
Xanaflex 4mg 1x Day
Urelief Plus 6 hrs as needed for Bladder spasms
Prelief as directed
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For me Ibuprofen makes me flare worse............Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Have you tried baking soda with water? Heating Pads? The adhesive ones are the ones I like the best. I'm still experimenting myself but have read that these work sometimes.Diagnosed with IC - March 2007
Diagnosed with vulvodynia - June 2007
-Lots of prayer
-Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
-Taking Prelief as needed (stopped because of pregnancy)
-IC dietComment
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I agree with Ronda, if I take ibuprofen it makes me flare much worse. I can get away with it if I take it with prelief at the exact same time though but that's just me. Personally I would call the gyn and see what they can do for you, I'm hopefully winding down from a horrible flare and there is no way I would have gotten through it w/o pain meds. I called my gyn a couple of months ago before I started seeing a uro and told them that I had IC and endo and was flaring something awful. They called me in some wygsic I think is what it was. It didn't get rid of the pain but it did take the edge off. Honestly the worse they can say is no and then you are still in the same place but they might be willing to call something in for you and help you get through it.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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HI Mia, Sorry to hear you are flaring so bad! I know how miserable that is! Have you tried AZO? it's over the counter and I buy it at Walgreens or CVS. It's like a anesthesia for the bladder.
Also...I can't take Ibuprofen either.....it makes me flare and makes my urethra hurt. I can take one Tylenol....but not 2 at a time.
I never ever got help from a GYN. I tried several before going to a URO....who is an IC specialist. Can you find a URO who specializes in IC? I just went thru the phone book and called every URO till I found one. I hope you get to feeling better soon! Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:Comment
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I suggest you call your doctor in the morning. And ibuprofen is a huge "no no" for me too.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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Got the pain meds today finally! I have had my first day of relief since this started Sunday. Thank for the advice on the Ibprofen. I think you are right. I took it again this morning and the pain got worse. No more of that for me! I am home again today but am using the time to get things together for my doc appt on Monday. I have been trying to find out what is wrong for 3rys so now I am doing everything in my power to get better. I want to take control of this and learn as much as I can about it.Mia Sowell
Fort Worth, TX
2 Kids
Ethan (3)
April (17)
Husband Eric (Very Supportive)
Clinically Dxed 04-16-07
Symptoms Since 2004
Meds:
Elmoron 400mg 2x Day
Atarax 50mg 1x Day
Xanex .50mg 8 hrs As needed
Vicodin 5/500mg 4-6 hrs As needed
Xanaflex 4mg 1x Day
Urelief Plus 6 hrs as needed for Bladder spasms
Prelief as directed
Comment
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It sounds like you might be ready to find a new doctor to treat your IC, a urologist who treats a lot of other IC patients or is more familiar with bladder pain and IC issues. It might be a good time to do that.
You can post on here and ask for other IC patients in your area to suggest a doctor and post or pm you. Usually you will get a few responses, enough to find someone that takes your insurance. ( and better than walking in blind to a doctor who knows nothing about IC)
If you flare from time to time, and need help with managing the pain maybe you could talk to your new doctor about having meds during the year to manage your flares? A good IC doctor might be very understanding with that, or have a system in place at their office for calling in. Or even more treatments options for your IC.
If you are in a lot of pain, and it sounds like you are, I would try the Azo thing for now, if that doesn't help, I would call my gyno-the worst thing they can say is no-and at least you know where they stand for future problems. I would go to my gyno appt as scheduled and see how it goes. In the meantime, I would start working on finding a new doctor and making an appointment for a consultation with them, just in case your not happy with how the gyno. appt goes.
Good luck, don't forget your flare will pass!!!
Last edited by pj77; 05-10-2007, 08:47 AM.Diagnosed with IC in 9/2005,
Currently doing good, taking breaks from Elmiron, reduced amount.Comment
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