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  • Oh the pain is so bad!!

    I woke up this morning really early to an awful flare. The worst one I have had in months. I forgot how very bad this can be. I am peeing razor blades every 10 minutes and I am ready to just freak out. I am trying to stay calm because I know it makes it worse when you start to get worked up but it is hard. I just dont know what to do to make it ease up a little. I have tried the pain pills, heating pad, baking soda, lots of water, a valium, all to no avail.
    I called to get an appt with my doctor, thinking maybe he could do something for me but they dont have anything until next monday, which is to long to wait. I even thought about going to the ER but I swore I would never ever go there again after what happened a few years ago there. I hate the ER.
    Please help me! What should I do? Call and be forceful with my doctor? I am hurting so very badly.
    Sarah
    Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

  • #2
    Sarah,

    Does your doctor have an answering service that can reach him after hours? Do you have any B/O suppositories left that may help?????

    I think you should try to reach him/her after hours tonight and if not, then maybe go to an emergency room. I don't know what happened last time, but the chances of you seeing the same doctor are probably pretty slim.

    So Sorry to see you hurting! You are SUCH a sweetheart.

    love,
    Kara
    Hugs and Wishes for Pain FREE days!!,
    Kara


    www.loveforearth.net ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
    Twitter: Love4Earth

    Me and my Guccigirl... she helps me through those painful hours!

    Comment


    • #3
      Thanks Kara. I feel for you too It just breaks my heart that we have to go through this.
      The last time I went to the ER was just a bad experience all around. The doctor didn't know squat about IC and after waiting for 8 hours, I was given 2 vicodin! I already had percocet and brought it with me to the ER so they would know I wasn't a pill seeker but it still didn't work. After that, I swore I would only go if I was dying.
      I left a message with my doctor and also sent an email, so we will see what happens. I am hoping that he can see me.
      Still, I always feel a little silly going in when the pain gets bad. I guess because I am on narcotics long term and I always kinda feel like, well what can they do anyway? I dont know. I dont even know what he could do now to make things better.
      I tried the b&o and those arent doing much either. It is just all around rotten.
      Have you made any decisions on what to do about your doctor? I was going to ask, are there any other pain docs or even just PCP's around there who accept your insurance? I am kinda thinking it is just time to talk to someone else. How long have you been on the MSContin? WHY would he just lower it like this?? I just dont get it and I am furious at your doctor. Well hang in there, okay?
      Love Sarah
      Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

      Comment


      • #4
        Is there a possibility you could drop off a urine sample to be certain you don't have an infection working? Sometimes it's difficult to tell the difference.

        I hope your tomorrow is better.

        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


        • #5
          Is there a possibility of infection, like Donna said? If so, it might be worth a trip to check that out.

          Can the ER call your doctor and get a recommendation of what to give you?

          Though, I totally understand your fear of ERs! I have had some bad experiences at them as well.

          Not sure what I am going to do.......but I don't have any local options for pain management, I would have to travel somewhere. I guess I should start looking into that as an option.

          ugh.

          Yes, I'm sorry we are both having to deal with this! Its just not FAIR!

          Love,
          Kara
          Hugs and Wishes for Pain FREE days!!,
          Kara


          www.loveforearth.net ~reducing plastic waste one bag at a time~

          Facebook: Kara Kaiser
          Twitter: Love4Earth

          Me and my Guccigirl... she helps me through those painful hours!

          Comment


          • #6
            Thanks ladies. I actually did that this afternoon. It is usually one of the first things I do when the pain gets really bad for no apparent reason. I think it might be the stress. You know over moving and the company I work for closing down. I am responsive to stress and when I get stressed, the pain usually goes up too.
            I was feeling SO good and I almost think it is worse to feel really good for awhile, then feel bad again. I get so discouraged.
            Thank you for your support.
            Love Sarah
            Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

            Comment


            • #7
              Hi everyone,
              I just wanted to let you all know that my doctor just emailed me and he squeezed me in on Friday. I know he must be busy if he could only get me in on Friday, which is still 4 long days away.
              BUT he did say that in the meantime I can take a little extra breakthrough medication. I am allowed to take 10 mg - 4 times a day and he said I could take 15 mg - 4 times a day. hey, anything is better than nothing. He seemed really concerned about me and told me to just try to hang in there. He also said I may have to wait awhile on Friday b/c he put me in where he didnt have an appt, which I thought was nice.
              Now my kidneys hurt, really bad. I am trying to not freak out, but it is hard when you feel so very bad.
              Sarah
              Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

              Comment


              • #8
                Hi, Sarah! Sorry to hear you are so miserable right now. I agree with the others that it is always a good idea to get checked for an infection when you are flaring, since it is very hard to tell the difference. I hope for your sake that it turns out to be an infection, so you can get some abx and know you'll be better a few days after you start them.

                I hate that you have to wait until Friday to see your Dr. I know how you feel about the ER, (I have had a similar experiance with the one in our town.) Is there an Urgent Care near you? We have a couple and they are usually pretty good, and can get you back alot quicker than the ER.

                If not, you might try calling your Dr. tomorrow morning about an hour after they open, to see if anyone cancelled, so you might get in sooner.

                I hope that whatever this turns out to be, that it passes soon, and you start feeling better.

                Hugs,
                Amy

                Comment


                • #9
                  Sarah, I am so sorry to hear you're doing so badly right now. I hope you don't have an infection... well, in a way, I hope you do so antibiotics will help you get better. Still, I really hope it's not spreading to your kidneys. If you start spiking fevers and getting shaking chills, no matter what -- GO to the ER, okay?? Kidney infections can be very dangerous.

                  I hope you feel better...
                  ****
                  Jen

                  *Diagnosed with severe IC in 2004
                  *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                  *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                  *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                  **I am not a medical authority nor do I offer definitive medical advice. 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.

                  Comment


                  • #10
                    Sarah, I am so sorry you feel so bad. Sarah if your kidney keeps hurting you might want to go to the ER. Gosh I hope you start feeling better.

                    Sending hugs, Trishann

                    Comment


                    • #11
                      I'm sorry you are hurting so bad - it sure sounds like it could be a UTI to me, and maybe starting to spread to the kidneys. I hope so much that you will be okay until your doctor can see you, but I agree with everyone else, go to the ER if you have continued signs of a kidney infection. Those can be extremely painful, I have heard. And dangerous!

                      Hoping you feel better soon,

                      Lori

                      Comment


                      • #12
                        If you've had a further increase in pain, you really need to be checked to be sure you don't have an infection. Do you have a primary care physician who can do an infection check? I honestly think you need to find out today if you do have infection --- if you do, it can get worse.

                        Sending gentle hugs,
                        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


                        • #13
                          Sarah, I'm a prime example of why you shouldn't wait too long to get checked. I was SO sick this past week and it's because I didn't want to go to the ER, and took my time getting to the uro. I know why you don't want to go, but Friday seems like an awfully long time to go without some abx or something. If your kidneys hurt, I know you are in awful pain...I just went through that too. Did you say you'd dropped off a sample? If you haven't you need to and keep calling til they will either fit you in sooner, or call you in some abx depending on what your UA says. Please don't let yourself get as sick as I was....I took risks I shouldn't have taken.

                          Hugs, Sandy
                          *IC-- Summer 2004; PFD--October 2005
                          *Fibro--Fall 2000; CFS-- Fall 2000
                          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                          Total Abdominal Hysterectomy--adenomyosis--9\08

                          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                          Comment


                          • #14
                            Thank you all for your concern. I was having some kidney pain last night. At least I think it is kidney pain because it hurts in a really specific area of my back, on both sides. It has gotten better today though. I decided to take an ambien last night, so I slept all night.
                            I did drop off a sample yesterday to be checked. I will start calling today on it and see if they can tell me anything. I am lucky I have a good PCP who will let me just come in and give a sample really quickly, no messing around.
                            I think I am going to start my period again! I just had one but I am pretty sure I am getting another one. That is probably part of the increase in pain.
                            Thank you for your support. I will let you all know about the infection.
                            Sarah
                            Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

                            Comment


                            • #15
                              Feeling Your Pain!

                              Sarah,
                              I was just reading your post from a few days ago and hoping that you are feeling better..do you have kidney pain when you are having a bad flare up? I seem to have kidney pain ALOT these days with or w/o an infection. I now have a nephrologist who said my function is ok, but I still don't have concrete answers as to the source of my kidney pain. I also get at least 1 infection a month..sometimes it goes up into my kidneys..not fun!! Hang in there-
                              Jesamyn

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