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Is this a common IC problem? I don't have a problem going on a walk or just getting around, but if I have to stand for more than 10-15 minutes (standing still), I really start having pain. If I'm having trouble already, it hurts to stand for even 5 minutes, say in a grocery line. Anyone else?
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treatment:
-I follow the IC diet to the letter
-acupuncture and chinese herbs
-Prelief
-UTA
-instillations as needed
-beginning yoga and specialized yoga for breathing and relaxation
-Wellbutrin
-Klonopin
main symptoms: pain and burning -
You could have something else going on I would go to your uro/GP and see if they can figure something out. I'm not sure if that is a typical IC symptom.Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12
Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.
Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years). -
I have to stand for my job, and my doc wrote a note that I needed to be able to sit, because I have so much pain. I hate standing. I can't bend over at all without pain. In 6 months I have not had one pain free day. I keep hoping it will come soon.Comment
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Oh yeah, I have this problem too. (And not just with standing, also with walking for several minutes (like going to the grocery, or Walmart, or something, I am aching so bad by the time I leave! But, I dont think it is an IC thing, (at least not in my case), mine is from Fibromyalgia. I take Lyrica for it, but need to ask my Dr. to increase my dose, since it hasnt been helping like it used to. If you havent been evaluated for Fibro, I suggest you talk to your Dr about your symptoms and see what he/she thinks. They might do a trial of Lyrica for you to see if it helps. (It is also a med that alot of ICers take for bladder pain, so it would be a great med to try, if they do d/x you with Fibro.)
Sorry you have this problem too, but hope your Dr. finds something that will help you!
Sending hugs,
AmarantheI am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.
D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression
Meds: Estrogel (due to total Hyster)
The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)
(I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)
John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.Comment
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Standing still or walking slowly causes problems for me. If I walk at a fairly good pace, it doesn't bother me.
DonnaStay safe
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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.
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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. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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Thank you for your responses. I should have clarified that it is pain only in the bladder area.treatment:
-I follow the IC diet to the letter
-acupuncture and chinese herbs
-Prelief
-UTA
-instillations as needed
-beginning yoga and specialized yoga for breathing and relaxation
-Wellbutrin
-Klonopin
main symptoms: pain and burningComment
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I started taking Lyrica for pain on Friday, but I had to quit taking it as it raised my pulse and blood pressure. It was a really uncomfortable feeling. The sad part is, I think the Lyrica was helping some.Comment
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I can walk at a good pace but slow or standing causes bladder pain too.
MGMy
are with you all. May you all find a way to peace and joy in your lives.Comment
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I also find that most chairs are too high for me, I am on the short side, so I find if I put my feet on a small stool or something when sitting helps my back.
For example I always put my feet on the step stool at Dr.'s office, and I have a few of the small step stools for toddlers tp get on the toliet placed around the house and for sure, in front of my toliet.
The worst is driving the car for a long way, hours, my gas foot leg, hurts and goes numb from my butt to toes, so I have to stop often and get out and walk around. It does this to sit at the computer fo very long too. I keep meaning to try my stool at the computer.
It is always something we have to work around.
Briza I tried the cushion from the IC shop, but sitting on that for very long makes both legs go numb.
Have a good weekend MGMy are with you all. May you all find a way to peace and joy in your lives.Comment
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I do also have pain while walking slowly, but not at a fast pace. I can't make any sense out of that. But who can make sense of any of this?!treatment:
-I follow the IC diet to the letter
-acupuncture and chinese herbs
-Prelief
-UTA
-instillations as needed
-beginning yoga and specialized yoga for breathing and relaxation
-Wellbutrin
-Klonopin
main symptoms: pain and burningComment
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Just chiming in to say, "Me too!"
My pain when standing/walking used to be somewhat worse - I would feel like body parts were going to fall out between my legs I had such a severe heaviness. Then I had a hysterectomy, and it got somewhat better. Now, I'm noticing the pain again. Makes shopping, which used to be my all time favorite activity, very difficult. When we talk about quality of life issues, this area is what really upsets me the most! Darn disease anyways.Conditions:
IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10
; Ulcerative Colitis 4/12
Medications
Elmiron 3x day
Trazadone at bedtime
Tramadol as needed for pain
Monthly B-12 injections
Continuous Birth Control (even though I had a hyst, to control cysts)
heating pad, hot epsom salt baths, strict IC diet
Interstim implant 9/11
Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year
Failed Bladder Treatments
Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretchingComment
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I was at my doctor's office today and they said I could get a mild muscle relaxer for that. Did any of you know that? I sure hadn't heard of it. It's to be taken before the periods of time when you know you will be standing a lot. She said everything is constricting when that happens to IC patients. I may try it later, right now, I'm taking too many other medicines and actually don't have to stand for my job, etc. I should have gotten the name of it to share with you. sorry! If anybody knows, please post it. Thanks!treatment:
-I follow the IC diet to the letter
-acupuncture and chinese herbs
-Prelief
-UTA
-instillations as needed
-beginning yoga and specialized yoga for breathing and relaxation
-Wellbutrin
-Klonopin
main symptoms: pain and burningComment
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Pelvic congestion syndrome (PCS)
I had this condition which caused pain after standing. This was diagnosed during surgery. I was told that this is not an issue after Hysto. I still have the symptom though.Last edited by Thingone; 05-25-2011, 09:42 AM.Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.
Thankful: For all the support and comfort I receive on this site.Comment
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Thank you for your post. I have NEVER heard of this - pelvic congestion syndrome. very interesting. Do you do anything to treat it?treatment:
-I follow the IC diet to the letter
-acupuncture and chinese herbs
-Prelief
-UTA
-instillations as needed
-beginning yoga and specialized yoga for breathing and relaxation
-Wellbutrin
-Klonopin
main symptoms: pain and burningComment
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I have Pelvic Congestion Syndrome. I've gone through physical therapy (which helped some) and I had a procedure called an ovarian vein embolization. Bascially, with this syndrome you have varicose ovarian veins. With the embolization, I was put into a twilight sleep and they went into my groin vein, travelled to my ovarian vein (I just needed the left side done), and put in several little metal coils to block the ovarian vein. Over time, the vein died off and caused less pain.
The procedure really did help me. Bad news is, it was considered experimental and my insurance didn't cover it.
I also later went on to have a hysterectomy, and they removed more pelvic veins at that time. I'm happy to answer more questions if anyone wants.Conditions:
IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10; Ulcerative Colitis 4/12
Medications
Elmiron 3x day
Trazadone at bedtime
Tramadol as needed for pain
Monthly B-12 injections
Continuous Birth Control (even though I had a hyst, to control cysts)
heating pad, hot epsom salt baths, strict IC diet
Interstim implant 9/11
Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year
Failed Bladder Treatments
Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretchingComment
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