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Friday was so good by afternoon because of Pt. I felt normal, pain level was only a 3, and I thought I could conquer the world. This morning it was all back again. Can't seem to get going. Haven't done my PT exercises and still need to get my walking in. Plus I need to start sticking to my diet which might help. Won't be going back to PT until Tuesday but I can't go to PT for the rest of my life for a back massage with heat. Is the PT going to be like the TENS? Never thought I would be wearing that thing for 7 or 8 years either. I'm sick of it and wish I could go without it too.
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Hi Mary,
Sorry to hear you are in such pain today. I know how difficult it is dealing with pain and dr. appts all the time.....it can drive ya nuts!
I hope your pain decreases......maybe just do a little PT on your own? ...maybe that would help? Best wishes for a better tomorrow! 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: -
Mary,
I'm sorry you're in such a funk. It is hard when it feels like we're never going to get better. I am worried about that all the time. Then we talk about doing things with Griffin and I have to wonder if I would actually be up to doing them. Griffin told us that he wanted to go to the zoo when we were in the car today. Will I ever have the energy and the will my bladder ever be good enough that I can spend a day at the zoo w/ my son w/o having to worry about how I'm going to feel? I don't know but I have to hope so, I hope you start to feel better. We're all here for you.
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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Warm bath, then PT exercises? Heating pad? Slow walk?
Sometimes just moving will help a little. & if that's not possible, go for distraction, video or book or phone call. Hope you feel better soon--Kadi
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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.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
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