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  • #16
    Katie, if you don't hear from your doctor within the next couple of hours, I strongly suggest you take yourself to an urgent care center or ER. Your symptoms are severe enough that you need to know what's going on and be treated.

    Donna
    Stay 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 fool

    Comment


    • #17
      I know Donna. I'm so hesitant because I don't want to ruin Christmas Eve for my family. Although me not being able to walk and use my arms is already kind of bringing people down. I'm just hesitant.
      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
      Lexapro-20 mg
      Aciphex
      Ambien-as needed
      Percocet-7.5 up to 3 per day as needed
      Valium-10 mg x2 per day
      Phenergan-1 at night
      Prelief w/everything
      Now recovering from acute pancreatitis

      Currents treatments that help somewhat:
      Heating pad
      Hot baths
      Ice
      Being VERY still while lying down with legs elevated

      Comment


      • #18
        You can do more to ruin Christmas Eve for your family if you don't get medical attention. Please just do it.


        Donna
        Stay 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 fool

        Comment


        • #19
          Thank you, Bri. I looked at the list and luckily I don't have any of the psyche symptoms. The only symptoms I'm having are the pain, weaknes and muscle spasms in my legs and arms and neck. I'm actually better this morning. I'm not having to use the wheelchair, so I'm walking better. But I still can't reach over to my nightstand with my left arm. It's just so stiff. And I have to sit down to put on pants as I don't have any balance and my legs don't seem to want to come off the ground without serious pain. I put in for a refill at my pharmacy hoping that would catch my doc's attention. I know that when he's not at the office his calls go to his home. But it is Christmas Eve so I'm not having much hope of getting him til at least Monday. If it doesn't get any worse than this, I think I can handle it.
          Thank you so much for all the information.
          Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
          Lexapro-20 mg
          Aciphex
          Ambien-as needed
          Percocet-7.5 up to 3 per day as needed
          Valium-10 mg x2 per day
          Phenergan-1 at night
          Prelief w/everything
          Now recovering from acute pancreatitis

          Currents treatments that help somewhat:
          Heating pad
          Hot baths
          Ice
          Being VERY still while lying down with legs elevated

          Comment


          • #20
            I know Donna. I'm just torn. I'm trying to decide if it's really THAT bad. I'm deciding right now.
            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
            Lexapro-20 mg
            Aciphex
            Ambien-as needed
            Percocet-7.5 up to 3 per day as needed
            Valium-10 mg x2 per day
            Phenergan-1 at night
            Prelief w/everything
            Now recovering from acute pancreatitis

            Currents treatments that help somewhat:
            Heating pad
            Hot baths
            Ice
            Being VERY still while lying down with legs elevated

            Comment


            • #21
              Ive decided to go to the ER as soon as my husband gets home. I can't get my doctor and to me, this qualifies as an emergency. Thank you all for your help, encouragement and information
              Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
              Lexapro-20 mg
              Aciphex
              Ambien-as needed
              Percocet-7.5 up to 3 per day as needed
              Valium-10 mg x2 per day
              Phenergan-1 at night
              Prelief w/everything
              Now recovering from acute pancreatitis

              Currents treatments that help somewhat:
              Heating pad
              Hot baths
              Ice
              Being VERY still while lying down with legs elevated

              Comment


              • #22
                Hi Katie,

                Just wanted to reinforce the need to go to an Urgent Care or ER.

                If you have health insurance, you can call their advice nurse (the number is on the back of my Anthem Blue Cross card) and they can connect you through the insurance company to get the name/number of a covered Urgent Care near you. (That's what I had to do last Sunday for my bronchitis). If that doesn't work, then the ER is the next option. Sounds like since you've left multiple messages for your doctor & not heard back, you need to go to Plan B--either Urgent Care or the ER.

                Please make the call to your insurance and go to the ER or Urgent Care now. I'm worried hearing that your symptoms are so bad. What you are experiencing is not ok and you shouldn't just settle for it. One thing I've had to learn with my IC is to stick up for myself and to ask for help.

                I'm also worried you're relying on us, who are just other patients, rather than getting immediate help from a doctor. Our boards are for emotional support and for topics for discussion with a doctor, they are not substitutes for medical care from your own or other local doctor.

                Please, please get to Urgent Care or the ER today.
                Kadi

                -------------------------------------------------------------
                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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                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!

                Comment


                • #23
                  Hi Katie,
                  I see you posted at the same time as me. I'm glad you're going to the ER. Please let us know what happens & that you're ok. I've not known you long, but I already care about you a lot.
                  Best,
                  Kadi
                  Kadi

                  -------------------------------------------------------------
                  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.
                  ------------------------------------------------------


                  New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                  Source - Pinterest
                  "


                  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!

                  Comment


                  • #24
                    Katie,
                    I am really glad to see you decided to go to the ER. You do need to follow up on this today and get some help. There will still be time for Christmas after you take care of you first! Hugs!
                    Jolene

                    "Life is what happens when you are making other plans" John Lennon

                    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                    Information for Patients can be found here.
                    http://www.ic-network.com/patientlinks.html


                    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                    "IC Angel 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."

                    Comment


                    • #25
                      Katie,

                      I'm glad you are going to ER. Your family will understand and would have a much worse Christmas if something bad happened to you.

                      Hope you get in fast and back home and everything is okay.

                      Mike
                      -

                      Symptoms: started July 2007

                      New pain medication regimen has things under pretty good control for many weeks now. Exercise and eating healthy along with pain control have given me new life.

                      Current Symptoms: pain in testicles, penis and general groin area. Other discomfort that is beyond pain, a maddening crazed feeling that defies description. New pain medication has most symptoms under good control.

                      Frequency and urgency was a problem the first year or so but frequency is normal now.

                      Diagnosed: Prostatitis first then IC by Cysto/Hydro

                      Current Meds: Hydroxyzine 25mg 3 x day, Pyridium 200mg 3 x day (off 3-4 days on 3-4 days), Oxycodone, Norvasc (BP).

                      Past medications and treatments:
                      Protatitis and IC diet strict for 6 months, no change. Still watch diet although nothing seems to help or make worse. Have tried reverse, ate lemons to see if worse but no change at all.

                      Meds tried - Amitriptyline, Detrol, Flomax, Cipro, Doxycycline. many other antibiotics, Uroxatrol, Vicoprofen, Elmiron (6 months at $320 mo nothing), Aloe, Cysprotek, Glucosamine, Marshmallow, various oils, tons more stuff to strange and numerous to recount. Hydrodistension for diagnostic was horrible for two weeks after I was sure I must be going to die because nothing could feel that way and let you live.

                      Comment


                      • #26
                        Hi Katie,
                        I hope that you got in and out of the ER quickly today. I'm glad you decided to go. When you have time let us know how you're doing.
                        I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

                        Comment


                        • #27
                          Katie, just wondering how you are doing and what happened at the ER.

                          Comment


                          • #28
                            I'm home and doing better

                            I went to the ER on Christmas Eve and was, shockingly, not treated like a drug addict (which was one of my fears). But I was extremely sick. They put me in and started iv fluids and reinstated my Valium. But I had started running a really high fever and kept throwing up and we found out I had a really bad kidney infection that I had been thinking was a combination of a bad IC flare and Valium withdrawal. I was in there for 6 days but I'm home now and SO happy to be here. Thank you to everyone who encouraged me to go to the ER. Between you guys and the look on my husbands face when he got home that afternoon, I believe I was saved from even MORE pain. I hope you all had happy holidays and thanks so much! And also, never try to be your own doctor. I learned the hard way.
                            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                            Lexapro-20 mg
                            Aciphex
                            Ambien-as needed
                            Percocet-7.5 up to 3 per day as needed
                            Valium-10 mg x2 per day
                            Phenergan-1 at night
                            Prelief w/everything
                            Now recovering from acute pancreatitis

                            Currents treatments that help somewhat:
                            Heating pad
                            Hot baths
                            Ice
                            Being VERY still while lying down with legs elevated

                            Comment


                            • #29
                              Hi Katie,
                              Thank you for letting us know what happened. I was so worried about you & I'm very glad to know you're ok now. Thinking of you & hoping that 2011 brings better days!
                              Kadi

                              -------------------------------------------------------------
                              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.
                              ------------------------------------------------------


                              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                              Source - Pinterest
                              "


                              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!

                              Comment


                              • #30
                                Thank you Kadi

                                I hope this year brings us all relief!
                                Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                                Lexapro-20 mg
                                Aciphex
                                Ambien-as needed
                                Percocet-7.5 up to 3 per day as needed
                                Valium-10 mg x2 per day
                                Phenergan-1 at night
                                Prelief w/everything
                                Now recovering from acute pancreatitis

                                Currents treatments that help somewhat:
                                Heating pad
                                Hot baths
                                Ice
                                Being VERY still while lying down with legs elevated

                                Comment

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