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  • Depressed Newbie in a painful flare :'(

    Hi everyone

    Sorry I have just now chosen to write, I have been reading the forums here for a long time though.

    I have been in a painful flare up for the last 2 weeks that seems never ending. Which has landed me in the bed for most of those 2 weeks laying on a heating pad and hooked up to a tens unit on top of taking pain meds. It's just been completely miserable. I went back to my pcp and had a uti so I am now back on antibiotics once again, this makes 3 times in the last 2 months. It's all depressing, I have 2 children and sometimes feel like I don't do what I need to be doing for them. Thank goodness that their dad is also home so he is here to help out. Still doesn't make me feel any better about myself though.

    I have lived in a state of depression since I had a hysterectomy for absolutely no reason and have been very, very bitter since then. About 2 years after that I developed adult onset epilepsy, I had seizures when I was a child but they had stopped and suddenly just appeared again when I was 29. So now along with the ic I have to deal with epilepsy which they have not gotten under control. I can't drive anymore, and someone stays with me most of the time to make sure that I don't hurt myself if I happen to have a seizure. I am on topamax for the seizures and it has caused severe weight loss and I think it has also made the depression worse. It doesn't let me sleep, the pain meds for ic keeps me awake, and the pain from the flare up's definitely keeps me up so I spend most of my time on the forums here reading trying to find the "miracle" treatment that is going to stop the pain. I get so caught up reading everyone's stories on here sometimes that it's like I am in another world and it's the one time that I forget where I am and I get to leave the pain behind so I want to thank all of you for providing such a place for someone like me to escape to in times of need.

    Hugs and kisses to all

    hi grouphug

    Lara
    diagnosed with ic- 9 yrs ago. uro & gyno together during surgery. Neither explained it could cause pain - gyno and uro recommended a hysterectomy 2 yrs later to relieve pain - obviously did nothing to help pain. Have yet to find a good uro, going to a great pcp who understands ic but still on the lookout for a uro also. A Flaming IC MESS!!!!!!!!

  • #2
    Hi Lara,
    You are having a tough time right now and I wish I knew something more to help. I can tell you a UTI with IC will make you miserable. I have had 1 UTI since diagnosed with IC and I was miserable for a month. The infection was cleared in 10 days but the effects on an already irritated bladder was miserable. I literally did not leave my house for a month. So hopefully when your bladder heals after the effects from the UTI you will be doing better in the area.

    You will have to work closely with your Dr.s with the seizure issues too. If it would help when your bladder heals up some to go talk to someone about all the pain and illness issues you are dealing with that might be a good thing. Dealing with long term illness is depressing and overwhelming at times and we all deal with it differently.

    Take care of you and give your husband and kids a hug, they care and need you. We will all be here for you.

    Jolene kissing
    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


    • #3
      I'm so sorry you're having such a bad time right now. Hopefully the infection will clear and you'll feel a bit better.

      Pain medications should not be keeping you awake. It may be that you need to be taking something different. Be sure to let your doctor know you aren't sleeping --- sleep is so very important.

      Sending a welcoming hug,
      Donna
      Stay safe

      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.

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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 fool

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      • #4
        Welcome, Lara. You sure have a lot on your plate. I hope once the UTI clears that your discomfort will get better. Has your doc been culturing your urine and doing the sensitivities to see which antibiotic is right?

        Maybe we need to resurrect Club UTI... It is a nice diversion when you are flared....
        Kim

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

        *****************************

        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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        • #5
          Hello and welcome Lara, you must be going through a very rough time right now, and glad that just reading the boards has helped you in some way. It is true what Donna posted, sleep is very important, lack of it can really make the IC go into full gear. I know that happens to me, when I cannot get to sleep. I am on Elavil and Ambien and that has really helped me a great deal at night. I have Ultram for pain and that also has been helping me out with my facial surgery. Hope that you can get the right combination to help you get that good nights rest that you need. Please keep us posted and let us know how you ar doing, hugs Iris. hi grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

          Comment


          • #6
            HUGS to everyone for the replys!

            My pcp is monitoring the uti's carefully because I normally end up with severe kidney infections around the same time also. The only antibiotic I have responded to is Levaquin right now and I have 5 more days to finish up then back to the doctor I will go. Hopefully with good news this time and no more uti.

            As far as the sleeping problems go, I have a weird reaction to medication and they are trying to find something to help me sleep but as of right now, nothing is working. The topamax I am on for seizures normally makes everyone very drowsy, on me, I am wide awake. Go figure. Same thing happened with Ambien, Zanex, Elavil, and they even tried over the counter benadryl. But nothing worked, all of them just made me more hyper. Yesterday they called in Clonapin for me to try so I am going to start on that tonight and see how it goes. Will let you know tomorrow if it worked.

            I really think alot of it is the depression that keeps me awake, though I could be wrong but it's as if I can't ever get my mind clear enough to actually go to bed. I'm always worrying about something or another and that's normally what keeps me awake till late hours. I still have a lot of built up anger at my previous doctors for unwanted surgeries and for them never explaining to me that ic was something that I was going to have to live with for the rest of my life. It was not until recently that I found out where my pain was coming from and that since I had been around 10 years old had suffered from this disease. Even after I was diagnosed, they had to know it caused pain, and it bothers me that they let me go on through so many surguries, and so many other senseless procedures that would prove to provide no relief since they were blaming it all on other female problems that i didn't even have.

            I hate to rant on and on but it's those types of things and the pain included that just keep me awake and depressed and still in the back on my mind angry I guess you could say. I have a very loving and caring husband who washes, cooks, cleans, and does all the running with the kids since I am now longer able to. I do not know what I would do without him. My children are both just as wonderful and loving and I couldn't expect them to be anymore understanding of it all. God has blessed me greatly in my family and I will always cherish every moment I have with them. I just wish I was in a better state of health to enjoy them.

            grouphug

            Lara
            diagnosed with ic- 9 yrs ago. uro & gyno together during surgery. Neither explained it could cause pain - gyno and uro recommended a hysterectomy 2 yrs later to relieve pain - obviously did nothing to help pain. Have yet to find a good uro, going to a great pcp who understands ic but still on the lookout for a uro also. A Flaming IC MESS!!!!!!!!

            Comment


            • #7
              Hello Lara...I am so sorry to hear that you are dealing with so much right now. All I can say is that I sincerely hope that things get much better for you very soon. grouphug
              Wishing you the best, today, tomorrow, and always! Sheri G

              Comment


              • #8
                Lara, I am so sorry to hear you are having so much pain and depression. Are you taking anything for the depression? You have to get on something that helps with your depression. And, are you able to seek counseling? It may help to talk to someone about the loss of control you are feeling, dealing with Epilepsy and IC. I think that stress and depression only make our other illness's worse. I hope your depression lifts soon, and I hope your pain gets under control. Please Take Care of yourself. grouphug
                DanaW

                "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

                Comment


                • #9
                  Hi Dana

                  Yes currently I am taking Prozac 20 mg per day for depression and my husband has gotten a friend of ours who is also a counselor to come by more often than usual. My pcp has also been great for listening to me and spends more time than any doctor I have ever been to has with me. Everyone is trying to help the best that they can and I know that they are and I really do appreciate everything that everyone is doing. It's just so hard sometimes to deal with everything all at once. Maybe it wouldn't be so bad if I didn't have the flare up's,the uti, along with the seizure activity at one time but it all hit at once and I'm sure it will go away soon and things will be go back to normal Right now I feel as If my bladder has taken over my entire body though.

                  blah banghead
                  diagnosed with ic- 9 yrs ago. uro & gyno together during surgery. Neither explained it could cause pain - gyno and uro recommended a hysterectomy 2 yrs later to relieve pain - obviously did nothing to help pain. Have yet to find a good uro, going to a great pcp who understands ic but still on the lookout for a uro also. A Flaming IC MESS!!!!!!!!

                  Comment


                  • #10
                    sorry for the late reply, been recovering from surgery.
                    WELCOME TO THE BOARDS LAURA!!!!!!!!!!!!!!!
                    grouphug grouphug grouphug I think you are the first person that actually complains of epilepsy too. Sorry, but you are not alone...I struggle with seizures from epilepsy all the time. My guess would have been that if you thought your meds from epilepsy were keeping you awake that a lot of things would because that is how it usually is...it either makes you drowsy or wide awake...so sorry. The surgery I am recovering from is a hysterectomy....I would hate to have had one if I didn't need it so sorry.

                    It took me ten years to get diagnosed too..I understand how when you can't sleep so much of this bothers you.....I have been there many of times. I still struggle with frequent insomnia....but it has been worse...I would like to help you if I can.

                    I am multi disseased and have had a lot of surgeries.....read my story to find out some things about me....maybe we can help each other. grouphug
                    Faith, Hope, and Love,
                    Katrina


                    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                    IC 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.
                    or find me on facebook http://www.facebook.com/kat671?ref=profile
                    Be the Miracle! & Pay it Forward!

                    [email protected] please contact me...I am here to help!

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                    • #11
                      Hi Katrina grouphug

                      I am so sorry that you are having to recover from yet another surgery. I just now finished reading your story. It took me awhile to get back to normal but after a couple of trys with hormone patches they finally got me there. Just get plenty of rest!

                      When you do get a chance, I was wondering what medication you are on for epilepsy and has your seizures just stopped for long periods of time, then came on stronger than usual? I have gran mal seizures which they now call tonic clonic seizures. They started out to where I would have a small warning sign (normally a headache would start before hand) then they went away for awhile (maybe 5 months) only to come back full force. Now I have no warning sign and they are extremely violent and so much worse than what they used to be. I never remember anything but they scare my husband to death no matter how many he has seen and when I do finally wake back up I go days finding new bruises, cuts, scratches, and bumps. I am so sore for days that I can't stand to move at all. Epilepsy is new to me since I can't remember the seizures I had as a small child and it didn't start back until last year. I'm sorry for all the questions, I just haven't met many people who have ic, and epilepsy. Please don't answer these till you are rested and feeling better. Hugs and kisses to you and your family and I hope that you get to feeling better soon.

                      grouphug

                      Lara
                      diagnosed with ic- 9 yrs ago. uro & gyno together during surgery. Neither explained it could cause pain - gyno and uro recommended a hysterectomy 2 yrs later to relieve pain - obviously did nothing to help pain. Have yet to find a good uro, going to a great pcp who understands ic but still on the lookout for a uro also. A Flaming IC MESS!!!!!!!!

                      Comment


                      • #12
                        Hi Lara, so sorry for the late repsonse, just getting over the flu and strephe thorat here. I have utis chronically. I just want to welcome you to the site. Please keep posting and let us know how you are doing.
                        Hang in there , There is hope.
                        There is hope. Prayer works.

                        Love, Debbie

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