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  • well put i think that should be sent to all the a##holes in washington, to make sure it got to the right one, lol.

    don't blame ya, it shouldn't be labelled illegal if Dr's can't do anything legally.

    just stupid uneducated Dr's. I wish i had felt like staying in nursing school then go to practioner school.

    Comment


    • I am very upset reading all these posts too. I know what it is like being in pain all the time, with no relief in sight. The only thing I can say is to never give up. Even if you go to another doc who says no help, just keep trying. I saw so many mean docs who wouldnt help me, until I found my dr.right. I almost had no hope when I went to see her, but she turned out to be wonderful.
      We start to feel like ALL doctors are like this. But they arent. Many doctors are up on pain meds and know how to prescribe them.
      Please dont give up. Then they win!! The only one who loses out is us. Try to hang in there.
      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


      • Ovarian cyst - may be reason for everyday pain?

        Well I just got my pelvic ct scan results and instead of the hernia they thought I had, they found a 3cm ovarian cyst. It is on my right ovary, the same side as my recent unrelenting pain - so maybe this is the answer???

        Anyone ever have an ovarian cyst removed? Did it help the pain or make it worse? I am leary of any surgery ever since my partial hysterectomy (to remove my uterus) set off my IC pain so badly.

        My IC had been sort of under control before all of this and I am thinking that it wasn't my IC acting up again, but the cyst?

        Thanks for the info!
        Jenny

        Things turn out best for people who make the best of the way things turn out.
        - John Wooden

        ----------------------------------------------------

        IC, IBS, PFD, CFS-FM, PCOS, RLS, TMJ

        Wife, stay at home mother of two beautiful girls, former art teacher and architect

        Comment


        • Marsi4: if you get all DUUUHHH around docs like I, and many of us can, print out this page....take it it with you, especially that one #115...well done and said. attach research on pain management in the chronically ill and back up with web pages. Docs especially like Journals written for them...(A.M.A., A.J.M., blah, blah...pain docs themselves get into anestesology..can't spell..writings so if you can find articles in those journals to support you)...If you see an article in popular press, rather than cite that magazine (docs will turn their collective noses up at ladies home journal) find out the source of the article. find out more about the subject of the article.

          Just thoughts...its what I've done, but I'm a researcher..at least I was. Doctors like to see hard facts. (I gotta sleep, I almost typed docs like to see hard farts.)

          g'night t'a'll. It is 10 pm, 90 degrees, I am sleeping in my birthday suit, hoping the pervet across the fence isn't having his nightcap on the patio. We Northwest folk don't do well in temps over 90...me...I get grumpy real fast over 80; I'm trying to hitch a ride to the coast. it is 67 blessed degrees, with foggy skies..I can wear my fleece coat and sandals with socks. (I like to shock my friend from Florida) We hippies here....bought my all purpose shorts and water sandals today...still crabby though...my daughter swam all day yesterday and wanted to TAN for gods sake. She's 16 always had a good head, but she didn't wear sunscreen. I spent 3 hours in ER tonight because she has 2nd degree flipping burns, she was dehydrated and needed a bag of fluid..(geez..you woulda thought they were tearing her left leg off) and she got some codeine. The doctor told her she wasn't going to lecture her because she already knew how stupid she was. She's worried about peeling and looking gross and nasty for her big third date with a guy she adores. (They've been holding hands...now they may kiss...she's worried he won't want to kiss an onion.) ah...life jumps in and protects my little ones.

          Have a good visit with docs and take my advice.
          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

          Medications I CURRENTLY take:
          90 mgs Ms contin (45 mgs Am/PM)
          Percocet as needed
          Topomax 100mg day
          Ambien 10 mg bed
          desipramine 25 mgs




          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
          Albert Einstein

          Comment


          • Marsi: THANKYOU, THANKYOU, THANKYOU!!!!!! Your post was heard by all of us ICers out here worldwide, and my feelings are exactly the same as your's to a tee. I just didn't have the guts to put it out, so thankyou again for saying what all of us who have been treated like criminals, want to say. I do think this letter should be in every doctors office worldwide, and in every newspaper, because it is time that we are heard. Great job Marsi!!!
            Weezer

            Comment


            • Wow, I haven't been on these boards for forever. I have had IC for over fifteen years but have been diagnosed with it for 8 years. I feel so bad because it seems that no matter how things change they still stay the same.
              Same Dr.'s, same problems, same lack of total respect. I am probably one of the lucky ones. I have agreat Dr. but I still always feel like a drug addict when I ask for medication. My Dr. has never said NO, so this is probably my own hang-up. I am also tired of the nausea that comes from the narcotics.
              I was in Starbucks getting a Frappaciino for my daughter, and luckily I had a little warning and actually made it to the bathroom to throw-up. I guess the thing that I hate the most is that we never win, even when we have good Dr.'s and pain meds. Sometimes life with this disease, is so hard to handle because we never get to see the pot of gold at the end of the rainbow.. I am also in pain for a good part of my day. My physical therapist said it best "pain medication doesn't really take the pain away, it just makes you not care about it" Though I am one of the lucky ones I can still work, and take care of the family. It is so hard though when the thought of having to climb the stairs to go to bed, makes me decide to sleep on the couch ( great for relationships). Oh, well thanks for letting me vent it is always such a comfort to know I am not alone.


              Saying a prayer for us all,

              WendyK
              ALL THAT IS GOLD DOES NOT GLITTER, NOT ALL WHO WANDER ARE LOST.J.R.R. TOLKIEN

              Comment


              • Marsi: Just want you to know that I printed your excellent post and I will carry it in my purse to doctors, specialists ( who I see tomorrow), family, friends etc. You don't know the impact it has made on my life. You wrote everything that I have thought for years. Thanks for putting it to paper.
                Weezer

                Comment


                • Marsi4: Thank you so very much for the post.It was so so so great.I copied it and am taking it to my pain doctor tomorrow.Just to thank him for NOT being one of those doctors who wont,and dont help.Hopefully he will understand a little more even how much we go through and that this disease really is so hard and so painful 24/7.I really loved your post.I wish I knew how to nominate, because you better believe- I would! Thanks girl and God Bless. Celine
                  Celine in Iowa

                  Comment


                  • Marsi,great telling of how it really is, I agree totally w/ you. I to dont want to see o r hear of anyone dying, but it is true I have thought it many times, at least their suffering will end , ours just goes on and on. And I too thank God for my children, they have pulled from the edge of despair to many times to nimber. They need me sick or healthy, so I must keep plugging along...but it aint easy.
                    I recentley began seeing a new Dr. and after hearing my past history and taking a look at my urodynamic syudies HE told ME taht he was setting me up with a pain managment DR and would work WITH him to care for me, he said no one in your situation shouls have to suffer without prpoer pain managment" I dont care what else he does for me, his caring attitude about the pain I am in 24/7 told me all I needed to know about him. This is the first time in the 7 years since my DX that I have not been the one to bring up pain control and you all know how many DRs a ICer can see in 7 years!
                    I read Jills post about the law she helped pass in CA on pain care, I dont believe TX has one, but I am going to check it out ,someone has to write the first letter I guess!
                    Great post and congrats on the award. The truth will set us free.
                    Sonja
                    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
                    Support American Cancer Society Relay for Life
                    http://Relayforlife.org
                    Living life on hope and a prayer.
                    To read me and my family's story
                    http://ic-network.com/patientstories/sonja.html
                    Spinal surgery 04/06
                    Interstim implanted12/04
                    interstim removal 12/05
                    Hysterectomy 1998
                    Bladder surgeries due to hysterectomy,'98,99,00,01
                    DXx with IC w/ Hunners 1999
                    Chronic Pelvic pain
                    Chronic fatigue
                    Fibromyalgia
                    Depression/post traumatic stress syndrome
                    IBS
                    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

                    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
                    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

                    Meds:various pain meds,Soma (muscle relaxant)
                    Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
                    and a few others I'm sure,depending on how good I have been on my IC diet.

                    Trying to keep a positive attitude, in a negative world.

                    Best treatment of all, Good Friends who Understand

                    Comment


                    • jen, i had cysts (filled with blood) removed. it did nothing for my pain just took it out of side. i was in soooo much pain, that the cyst really didn't bother me. my gyno told me that cysts will come and go sometimes just the bigger ones can cause more pain. good luck with yours. oh, i was sore on the inside for few days along with ic pain. good luck.

                      i suggest we nominate a spokesperson for each state and we send them the post for pain control. something has to be done. living in pain should be considered cruel and unusal treatment.

                      Comment


                      • Huh? what do you mean a spokesperson for each state? Just curious....It sure would be cool if some of us could get together and do this.

                        Tracey
                        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                        Medications I CURRENTLY take:
                        90 mgs Ms contin (45 mgs Am/PM)
                        Percocet as needed
                        Topomax 100mg day
                        Ambien 10 mg bed
                        desipramine 25 mgs




                        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                        Albert Einstein

                        Comment


                        • Marsi4: Just want to congratulate you on receiving your award for your
                          fabulous post which has helped us all. As I said in my previous post, it helped me out tremendously with doctors, specialists, family & friends. You made it easy for all of us who have thought your exact thoughts, but just couldn't put it to paper. So thank you again, and be very proud of yourself for the great work and enjoy your award. You deserved it!!!!!
                          Wezzer

                          Comment


                          • Wendy,
                            I know what you mean, I don't get to these posts often. I should read them more, they make me know again that I am not alone fighting this disease. There are brave men and women that suffer right along with me. I know what you mean about throwing up. I lost my last job due to my many bathroom visits, and throwing up etc. My boss (who I used to work with 25 years ago and loved) would not even accept the note I brought in from my doctor. I complained to Human Resources and of course they forced me to take a lay off. I complained of the way my supervisor had treated me since I told him about my disease and they defended him of course and made my life miserable. I was finally offered a lay off and I took it. I can't tell you how relieved I am to be out of that company. Now I am in the middle of a divorce and no job. It scares me to death because when this divorce is final I will have no insurance. I know I am not able to work full time, I'm on morphine and it's side effects are awful. I'm looking now for something part time. I could tell you horror stories about my doctors as well. They have all been terrible, and I've seen many. The hardest part of this disease for me is my kids sometimes acting like I'm making it up, or they don't believe me. Even when I'm flat on my back with ice packs on me, under me, and yes I even have an insert.... they sometimes react like I'm not really sick. It breaks my heart.

                            Comment


                            • Ah Geez...I am, once again, crying for another person getting screwed by these F>>>>ing idiots. you know, you have an ADA problem, with note they should have to make some modifications to your working environment. It isn't just people So OUT there disabled covered by those laws. Look into that, ok. Meanwhile. My heart goes out to you. my ultimate nightmare/fear is facing this without help from doctors. I can't believe your HR person didn't recognise that. Take care of yourself, ok...As far as ice packs go, go to the camping sections and get the polar blankets. I found that and it is awesome...it is huge and wonderful. Just put a towel between yer skin and pack.
                              I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                              Medications I CURRENTLY take:
                              90 mgs Ms contin (45 mgs Am/PM)
                              Percocet as needed
                              Topomax 100mg day
                              Ambien 10 mg bed
                              desipramine 25 mgs




                              If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                              Albert Einstein

                              Comment


                              • Thanks I'll do that. I'll try anything. To be honest I think I'm running out of things to try. I'm really going to get serious and get a support group going in my area. I think it helps to talk to people going through the same thing and even better face to face.
                                Karen

                                Comment

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