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  • #1

    Getting Worse?

    Anyone had PTNS and felt worse? Maybe it will help me in the long run...but right now as soon as i feel the needle in my nerve and the electric shock going down my foot and in my leg: I tense up so bad it feels like it makes my symptoms worse. In fact just about anything that causes pain and discomfort makes me tense up and makes my IC worse.

    Any Thoughts?
    Thanks
    Nyeema
    Tags: None
  • #2
    What week are you on? I have my 10th treatment next week. I am suppose to have 12 treatments in all. I have been flaring lately. It's awful. This ankle stim is not helping me yet.

    Check me out on facebook: http://www.facebook.com/glory.ic
    Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
    Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
    Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
    Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
    The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
    IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

    Comment

    • #3
      PTNS & Pain

      Thanks for your response. i barely endured 3 tx's! i called the office and said i can't do this any more! Maybe it's just me... but an electrical shock going into my ankle and radiating throughout my foot and up my leg...made me tense up and flare up!

      After telling the uro's nurse this she confessed that she had asked a co-worker to hook her up to PTNS just so she could experience what she was doing to her patients. She said she turned it off after 3 MINUTES! She added that she thought it was excruciating and understood completely why i was canceling the tx appt's.

      i am looking into botox next....

      good luck with your tx's
      nyeema

      Comment

      • #4
        Wanted to share some of my story...Diagnosed at age 20 with IC...


        My name is Rachael and I was diagnosed eight years ago. I recently had my first baby at age 28, and I was in remission with my symtoms between 23-27 (It was glorious). Well, somehow I ate some sour cream that was a different brand than what I had been eating and a flare occurred that was more horrible than anything I had felt since the beginning. Then I found out I was prego a few weeks later and had to stop the detrol which has helped me in the past. The first trimester was the worst with my IC. The second got better, but then I had to go back to work after the summer was over and it got really bad in the middle, then the last three months I was doing really well. My symptoms were challenging and my pain was pretty bad off and on during that time.

        So, here I am five months after my first baby and doing fairly well. I struggle with constipation and I have recently been trying to avoid certain foods but it is so hard bc I am already limited. I would rate my symptoms as 3-4 on a scale of 1-10 with 10 being the worst...so I am doing fairly well.

        I recently was laid off because of all the job cuts in teaching in the state of TX (I was only a teacher aid too) and so my insurance runs out in August. I haven't taken any medications to assist with the IC in quite sometime, but I can't right now bc I am still breastfeeding and loving it, and financially I am stuck. So, I have been working really hard at keeping my IC under control. I am disciplined with my diet...extremely disciplined!! I have not even tried these instillations that my urologist mentioned, I am not sure how much they'd help. Acupunture really really helped me in the past, but it is expensive!! PLus you need someone who is an expert in my opinion. There are several in my area that are great. WEll, enough ramble, I am looking to make friends who understand the struggle and difficulty and mental anguish that this god foresaking condition can cause! I too pray everyday for myself and others with IC because I feel that we all can heal, but it is a battle. I'll leave my e-mail it is [email protected] am hoping to connect with positive women, mothers, non-mothers, and find encouragment amongst the IC community.

        Former Medications 2003-2006
        Elmiron 100 mg 3x a day
        Detrol LA 4mg 1x a day (used periodically as needed)

        Herbal Remedies/Natural Solutions
        Sarsaparilla 30C
        Marshmellow Root Tea
        Chiropractor (as needed)
        Chamomile Tea
        Hot Baths
        Heating Pads
        Cold Packs
        Physical Therapy with a pelvic floor specialist (as needed)
        Acupuncture (occassional)

        Comment

        • #5
          I canceled the rest of my PTNs appointments-I only had a couple left. I have been flaring lately up to a 9 or 10. I went to the ER last week and they gave me pain meds through an IV becuase I was in so much pain (and the pain was on top of my usual oxycodone dose). I cannot live like this. I do not know if it was the PTNs or not but was the only thing I changed. I am so sensitive and have to be so careful. I think you were wise to stop getting them after 3 times!

          Check me out on facebook: http://www.facebook.com/glory.ic
          Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
          Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
          Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
          Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
          The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
          IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

          Comment

          • #6
            Hi Rachel-I sent you an email....so now you have my email, too! Glory

            Check me out on facebook: http://www.facebook.com/glory.ic
            Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
            Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
            Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
            Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
            The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
            IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

            Comment

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