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  • Lower back pain? Newly diagnosed...

    I was offiacially diagnosed last week. I am sure that I have had a mild form of IC for years. I have not been able to tolerate carbonated beverages, coffee and artificial sweeteners for about 15 years. I thought it just was a sensitivity that I had. I did not know that there was such a condition. I experienced my first major flare in Feb/07. After many tests/antibiotics and trips to emerg. for pain relief, they have started me on Elmiron. I have put myself on the IC diet. If I cheat a bit and can sure tell. My flares seem to arrive with my periods. I often get lower back pain and cramping. Do others get that too? I am considering the TENS machine. Anyone have any results? I have tried acupuncture. It seems to help with flares.
    Interstitial Cystitis: Elmiron and Hydroxyzine
    Depression/Anxiety: Remeron, Cipralex and Clonazepam

    *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
    * 2 hydrodistentions :

    * currently on "Nabilone" for pain management

    Taken the following:
    Gabapentin no relief but could tolerate it
    Lyricano relief but could tolerate it
    Cymbalta severe depression/anxiety etc.
    Topamax severe nausea and weight loss
    Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

    What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

    Other conditions...
    Vulvadynia (amytriptaline cream - no longer using to to irritation)
    Severe IBS
    Chronic Sinus pain (nasal rinse as need)
    Migraines
    Lower back and sacroiliac joint disfunction

    Allergies: Erythromycin, scents and detergents

  • #2
    To the ICN!
    Lower back pain is quite common and when I was still getting pain often I definatly had lower back pain...comes back still every now and again.

    Like you I went through years of a mild case before a diagnosis and in pain.

    I so hope Elmiron works for you but if not don't let a doctor tell you there aren't other options.
    http://icandme.9.forumer.com/index.p...=ST&f=19&t=217 newbie kit
    http://www.ichelp.com/TreatmentAndSe...medsguide.html ICA treatments and Meds
    http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.
    http://icandme.9.forumer.com/index.php?showtopic=4 herbal start with IC

    TENS are really helpful if you have Pelvic Floor Dysfunction causing or increasing some of your symptoms which about 70% of IC patients do. Back pain can be because of Pelvic Floor Dysfunction ....worth leearning about!

    Glad your having help with acupumture!

    I hope you have success with whatever treatments you try!
    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!

    Comment


    • #3
      injuries and back pain? connection to IC?

      After searching the forum I found many other with lower back pain. Nice to know I am not alone. I too have had injuries to my back- 2 rear ender car accidents and a snowboard accident - severe injury to my tail bone.
      Interstitial Cystitis: Elmiron and Hydroxyzine
      Depression/Anxiety: Remeron, Cipralex and Clonazepam

      *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
      * 2 hydrodistentions :

      * currently on "Nabilone" for pain management

      Taken the following:
      Gabapentin no relief but could tolerate it
      Lyricano relief but could tolerate it
      Cymbalta severe depression/anxiety etc.
      Topamax severe nausea and weight loss
      Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

      What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

      Other conditions...
      Vulvadynia (amytriptaline cream - no longer using to to irritation)
      Severe IBS
      Chronic Sinus pain (nasal rinse as need)
      Migraines
      Lower back and sacroiliac joint disfunction

      Allergies: Erythromycin, scents and detergents

      Comment


      • #4
        I have severe back pain too. I have sacralitits, a busted tail bone that healed in the wrong position, and 2 protruding discs.
        You will find great support and a weatlh of info with in these pages. Glad you found us.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          I have lower back pain and leg pain too. I have PFD as well and my Doctor said that combined with that, my body is reacting to all the bladder/pelvic pain and that is why my back and legs hurt as well. I am supposed to start PFD therepy, but so far I haven't been able to find anyone close enough for me to tolerate the drive every week. Thanks for sharing your acupuncture experience. I wish I could try it, I just can't afford it right now!
          I agree with Katrina about the Elmiron. It didn't help me but I know it has helped many people here. Unfortunately I kept taking it and enduring throwing up and a ridiculous pricetag b/c the Doctor I was seeing told me there was nothing else to try until I had been on it a year. After 8 months with no relief I found an IC specialist who is giving me lots of options now!
          Good luck with everything! I hope you get some relief soon.
          Oh, I have found that hot baths and heating pads really help with my back and leg pain. Simple tip,but I didn't think to try them for a long time!
          Rachel
          DX's:
          IC; PFD; possible Fibromyalgia; IBS;

          Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

          I've Tried:
          three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
          Currently using:
          Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
          Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
          I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

          Comment


          • #6
            back pain

            I have 3 lower back disc compressions, and pain gets worse with my IC and periods too.What do you do to help your back pain? pain pills make my moods horrible. and the dr.s would not help me for my pain.

            Comment


            • #7
              pain killers

              Tylenol 3 makes me feel horrible. I do take Advil. Massage therapy works wonders but it is costly. Luckily I have a good medical plan that covers massage/acupuncture/chiropractic work. I believe more alternative methods that have been around for centuries, should be paid for. Like we want to take more pills to cover it up.
              Interstitial Cystitis: Elmiron and Hydroxyzine
              Depression/Anxiety: Remeron, Cipralex and Clonazepam

              *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
              * 2 hydrodistentions :

              * currently on "Nabilone" for pain management

              Taken the following:
              Gabapentin no relief but could tolerate it
              Lyricano relief but could tolerate it
              Cymbalta severe depression/anxiety etc.
              Topamax severe nausea and weight loss
              Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

              What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

              Other conditions...
              Vulvadynia (amytriptaline cream - no longer using to to irritation)
              Severe IBS
              Chronic Sinus pain (nasal rinse as need)
              Migraines
              Lower back and sacroiliac joint disfunction

              Allergies: Erythromycin, scents and detergents

              Comment


              • #8
                I find that stretchiing helps me with the lower back pain.
                Interstitial Cystitis Stomach problems
                diastolic dysfunction
                vascular insufficency of left leg
                pelvid floor disorder
                hypothroidisim
                asthma
                bread cancer - 5yrsl. remission
                swollowing difficulty
                fatigue
                lots of doctors
                lots of med.














                Keep your eyes on the Lord and he will direct your paths.

                Comment


                • #9
                  Ouch

                  YUP. LOWER BACK PAIN. ALL THE TIME. FEELS ALMOST LIKE IT IS THE FLANK AREA, SOMETHING WRONG WITH THE KIDNEYS. IT WAS THE FIRST THING I ASKED MY DOC, WHEN I WAS DIAGNOSED WITH I.C. .. ARE YOU SURE MY KIDNEYS ARE OKAY? YEAH.. I NEVER CAN ESCAPE THE PAIN, BUT AM MUCH MORE USED TO IT NOW.. STRETCHING.. REALLY DOES HELP.. JUST DO WHAT FEELS RIGHT.. AND IT SHOULD HELP WONDERS!! HERE'S TO MUCH BETTER DAYS! P.L.U.R.
                  Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                  Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                  Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                  Comment

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