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  • #1

    Pain left side of body from buttocks to ankle

    For the last few weels I have had this pain that goes from my left buttock down my leg to my ankle..it is like a burning, almost stabbing type of burning pain that is unbearable when it hurts at times..I have had this problem for over a month and at first I went to see my Rheumatologist and I got a cortisone injection and felt better for a week or two and now it is bothering me again..So I called up my Urologist asking if my Interstim could be causing any of this pain since it deals with nerves and seems like a place to start..They gave me a referral to see a neuro surgeon this Wed to get a EMG..Never heard of it before so hope that it tells them what is wrong cause it hurts off and on..One minute I am find and the next minute in extreme pain. Last night I went shopping with my kids at Kohl's and right in the middle of the store my leg and side cramped up and I was in pain big time so I had to go in the dressing room to sit till the pain went away like 5 mins later..i think I have something wrong with my sciactic nerve..anyone had problems with their scaictic nerve please email me..i need advice on how to deal with the pain until I go see doctor...Thanks
    Jennifer
    Interstitial Cystitis(Interstim Therapy)
    IBS
    Fibromyalgia
    Pseudotumor cerebri
    Type 2 Diabetes
    Tags: None
  • #2
    You mention that you wonder if your interstim is related to your pain...have you tried turning it down or off and if so, did that help? Have you gone to the doc yet?

    Hope you are feeling better!
    Claudia

    ~Claudia

    "A heart is not judged by how much you love; but by how much you are loved by others."
    ~ The Wizard of Oz

    "If I ever go looking for my heart's desire again, I won't look any further than my own
    back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy

    Comment

    • #3
      I have the same pain and have been dealing with it for a long time. I thought it was just due to the IC. It starts in my hip(left side too) the pain goes thru my thigh to my knee then skips down to my ankle. Extra pain in hip/thigh/ankle. I just started to see a new Pain Clinic Dr and in her examination she thinks I have lower back/hip and possibly nerve damage. Not quite sure what to tell you to help. I start PT tomorrow with a new PT who will deal with this area. Then the next day they are checking for nerve damage. Oh the joy--and co-pays!!!

      Comment

      • #4
        HI Sounds like Sciatica to me. I have had it ever so often for years. It's very painful....my surgeon said that pain is comparable to tearing flesh and I totally agree! It's awful! PT helps with Sciatic along with an anti inflammatory drug. You might ask for an MRI/CS to pinpoint the problem cause it could be a ruptured disk. Good luck! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment

        • #5
          If you didn't have the interstim, my guess would have been possibly sciatica. Unfortunately with the interstim an MRI isn't possible, but I'm sure they will find a way to diagnose your problem.

          I hope you feel better very soon.

          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

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          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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          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]

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          Comment

          • #6
            I had an apt today with a neuro surgeon and he did a EMG test where they stick needles in your muscles and do shocks to test your nerves..He seemed to think that my pain was coming from my lower back so he wants me to see my family doctor to have Xrays done...Maybe a herniated disc cause that pain to go down my leg..I was in a lot of pain doing the test when he stuck the needles in my lower lower back...so will call my doctor and see what happens but I know I am tired of this pain for sure

            Jennifer
            Interstitial Cystitis(Interstim Therapy)
            IBS
            Fibromyalgia
            Pseudotumor cerebri
            Type 2 Diabetes

            Comment

            • #7
              How bad was the needle thing?? I'm having that done tomorrow. Ouch!! Not looking forward to it. Physical Therapist examined me and I have a hip thing going on but she doesn't want to do anything with it until after my hysterectomy/hernia operation. She told me to walk -- that's supposed to help.
              angie

              Comment

              • #8
                Emg

                I have an EMG Test March 13th where will stick tiny needles into my urethra and send a tiny electical current to it and it goes up the spinal cord and back down again. The EMG meausres the speed at which those electical impulses travel. It's part of the last test for the Pudendal Nerve Entrapment. I hoping the procedure is not too painful. It's only supposed to be a few minutes long.

                Kara
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment

                • #9
                  Good luck with that, Kara! It sounds...interesting. I do hope that it will help you and your docs figure out what is going on and get you some treatment to ease your symptoms!

                  ~Claudia

                  "A heart is not judged by how much you love; but by how much you are loved by others."
                  ~ The Wizard of Oz

                  "If I ever go looking for my heart's desire again, I won't look any further than my own
                  back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy

                  Comment

                  • #10
                    The EMG test wasn't very painful I thought..Still in alot of pain..I am on Naproxen, Flexeril and Darvocet and still in pain..I went to ER today cause I am to the point now in so much pain I can't walk longer that a min or two and then I have terrible pain..Pain is in lower lower back like right where top part of my butt crack is and then of course the pain down my leg..Now wondering why I went to the ER cause they didn't do much..They said they couldnt' any better pain medicines than I am already on and they also did a normal xray of my back so that turned out ok...So only thing I can say now is wait till Monday when I go to see my family doctor and tell him I need a cat scan..maybe I have a herniated disc cause I dont' care what no one says I am in pain that is not normal..
                    Interstitial Cystitis(Interstim Therapy)
                    IBS
                    Fibromyalgia
                    Pseudotumor cerebri
                    Type 2 Diabetes

                    Comment

                    • #11
                      HI You sound so miserable. I feel so for you! I had a herniated disk for 15 yrs before a dr. pinpointed the problem. You said you are going to your dr. on Monday.....have you tried icepacks on your lower back? I literally lived with ice packs, day and night. It helped with the pain....some. Nothing fixed the problem till I had a laminectomy. It was amazing when I woke up from surgery with no hip/leg pain. It was wonderful! Good luck to you! Roxie

                      Double Spinal Cord Stimulator surgery 8/09
                      Unsuccessful MiniArc sling surgery 12/07
                      Dx'd Hypothyroid
                      Dx'd Chronic Axonal Neuropathy & Myopathy
                      June 2007
                      Dx'd IC May 2006 (after suffering for 25+ yrs!)
                      First Cysto 1979
                      First Hydro 1981 (Many treatments since then!)
                      Collagin"Durasphere" injections for urethra
                      Gall bladder surgery Aug. 2004
                      Gastric Bypass Dec. 2004
                      Dx'd: Barrett's Esphogus July 2004
                      Dx'd: Vaginal Atrophy 2005
                      Bladder surgery 2000
                      Dx'd: IBS 2000
                      Hysterectomy (fibroids) 1999
                      Laminectomy 1989
                      Dx'd: Degerative Disk Disorder 1989

                      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                      Comment

                      • #12
                        Neurosurgeon and Family Doctor

                        Jennifer,

                        I hope that your family doctor will be able to help you on Monday. I'm so sorry you are in so much pain and the ER didn't help. I understand how you feel minus the leg pain. I've been having terrible tailbone pain due to other issues. I have not been able to sit for a few months. Maybe the X-Rays will yield something they will be able to help you with.

                        Can the Neurosurgeon that did your EMG talk with your family doctor about what tests/x-rays he suggests should be ordered?

                        What do they do for a Herniated Disk?

                        Thinking of you and wishing you a some pain relief!

                        Kara
                        Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                        "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                        I also have some journals of my journeys, past and some present at:
                        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                        Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                        Comment

                        • #13
                          Yes to be honest I am quite miserable..I have not tried using ice packs but I have used a heating pad.. I think I even feel worse after using the heating pad..I never tried using ice packs before cause thought the coldness would not be comfortable..I will attempt to try anything at this point..The neurosurgeon I saw the other day basically just send his would write out the report to send to my doctor and to have my family doctor order me a cat scan..Hopefully things will get better soon...Thanks for the input

                          Jennifer
                          Interstitial Cystitis(Interstim Therapy)
                          IBS
                          Fibromyalgia
                          Pseudotumor cerebri
                          Type 2 Diabetes

                          Comment

                          • #14
                            HI! Heat always made my back/leg hurt more......though you would think warm would make it feel better! Ice reduces swelling....heat brings more blood to the area. That's why I think the ice helped...it reduced the swelling around the disk....at least that's how it felt. Give it a try.....20 min on and 20 min off. Also I had a TENS unit that helped with the pain.......that did help keep it bearable. Take care.....Roxie

                            Double Spinal Cord Stimulator surgery 8/09
                            Unsuccessful MiniArc sling surgery 12/07
                            Dx'd Hypothyroid
                            Dx'd Chronic Axonal Neuropathy & Myopathy
                            June 2007
                            Dx'd IC May 2006 (after suffering for 25+ yrs!)
                            First Cysto 1979
                            First Hydro 1981 (Many treatments since then!)
                            Collagin"Durasphere" injections for urethra
                            Gall bladder surgery Aug. 2004
                            Gastric Bypass Dec. 2004
                            Dx'd: Barrett's Esphogus July 2004
                            Dx'd: Vaginal Atrophy 2005
                            Bladder surgery 2000
                            Dx'd: IBS 2000
                            Hysterectomy (fibroids) 1999
                            Laminectomy 1989
                            Dx'd: Degerative Disk Disorder 1989

                            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment

                            • #15
                              I had a CT Scan Lumbar Spine done yesterday..The EMG test I had beofre showed some slowing of the L5-S1 nerve.. I am now just waiting for the doctor to get the results to the scan and see what they say...Hopefully I'll have an answer and feel better soon

                              Jennifer
                              Interstitial Cystitis(Interstim Therapy)
                              IBS
                              Fibromyalgia
                              Pseudotumor cerebri
                              Type 2 Diabetes

                              Comment

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