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  • Instills causing Fibromyalgia flare?

    Hi.

    I have a question. I had my first instill Wednesday. It had Heparin and I think Sodium Bicarb. ? I can't have lidocaine.
    I am sensitive to this.

    I also have fibromyalgia and have not had a full blown flare in a long time.

    Thursday I started hurting in my low back and legs- and by Friday I was in so much pain I sat in the bathtub
    and was barely able to get out.

    Saturday I ended up at the Emergency room. They said I didn't have a UTI (I had been drinking water w/ sodium bicarb in it- and it didn't help).
    I had called the doctor's office where I had this done and she thought I had kidney stones. (This wasn't the doctor who did the instill- I've never had
    kidney stones.)-- I was in so much pain the doctor did a CT of everything- and it was fine.

    I am taking Cipro in case the Sodium Bicarb hid an infection, but I am still in pain all over my body. When this first started, I had a very difficult time
    urinating- . The flow wouldn't start.

    Well, it is Monday and I am still in pain- all over. Head to toe.

    I am supposed to have another instill this Friday- but I think MAYBE this last instill set something off......


    I am doing the best I can with my diet-- but I am supposed to be on a diet for yeast and irritable bowel, too- so following
    3 different diets at the same time is - confusing to me.

    I am new to all of this and I'm not sure- if an instill could induce a flare up...... The doctor said I had sciatica and periformis damage....
    but I did NOT have this until the instill-- or the symptoms of it.....

    Has ANYONE had this happen? I don't want another instill if this is what is going to happen again.

    I didn't ask for a CAT scan and the doctor was a bit not nice afterwards... about the radiation and such...
    I am surprised I don't glow in the dark for CT scans.


    Any advice would be greatly appreciated.

    Shura
    Last edited by shura; 11-11-2013, 03:55 AM.


    I have Fibromylagia, Vulvodynia, Interstitial Cystitis, Chronic Depression, struggle with Systemic Yeast issues, TMD, IBS and Chemical sensitivities.

    I am grateful to have found this forum.



  • #2
    Re: Instills causing Fibromyalgia flare?

    I wouldn't think a bladder instillation would penetrate the body tissue.

    Donna
    Stay safe


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    • #3
      Re: Instills causing Fibromyalgia flare?

      I actually just had my first instill and I had exactly what you are describing. My lower back and legs hurt so bad. I have spent a day and half in bed with it. The doctor recommended UTA or pyridium and that actually helped some. So my best guess is that it makes my bladder spasm so much that my back hurts and that causes referred pain down my legs. Hope you have answers soon!

      Originally posted by shura View Post
      Hi.

      I have a question. I had my first instill Wednesday. It had Heparin and I think Sodium Bicarb. ? I can't have lidocaine.
      I am sensitive to this.


      I also have fibromyalgia and have not had a full blown flare in a long time.

      Thursday I started hurting in my low back and legs- and by Friday I was in so much pain I sat in the bathtub
      and was barely able to get out.

      Saturday I ended up at the Emergency room. They said I didn't have a UTI (I had been drinking water w/ sodium bicarb in it- and it didn't help).
      I had called the doctor's office where I had this done and she thought I had kidney stones. (This wasn't the doctor who did the instill- I've never had
      kidney stones.)-- I was in so much pain the doctor did a CT of everything- and it was fine.

      I am taking Cipro in case the Sodium Bicarb hid an infection, but I am still in pain all over my body. When this first started, I had a very difficult time
      urinating- . The flow wouldn't start.

      Well, it is Monday and I am still in pain- all over. Head to toe.

      I am supposed to have another instill this Friday- but I think MAYBE this last instill set something off......


      I am doing the best I can with my diet-- but I am supposed to be on a diet for yeast and irritable bowel, too- so following
      3 different diets at the same time is - confusing to me.

      I am new to all of this and I'm not sure- if an instill could induce a flare up...... The doctor said I had sciatica and periformis damage....
      but I did NOT have this until the instill-- or the symptoms of it.....

      Has ANYONE had this happen? I don't want another instill if this is what is going to happen again.

      I didn't ask for a CAT scan and the doctor was a bit not nice afterwards... about the radiation and such...
      I am surprised I don't glow in the dark for CT scans.


      Any advice would be greatly appreciated.

      Shura

      Comment


      • #4
        Re: Instills causing Fibromyalgia flare?

        I know this thread is old, but I can relate. I think it is from the pain of having to hold the solution in our bladder which then activates the surrounding nerves & spreads. It is my experience that instillation's help, so sometimes it is worth it to be in more pain for a few days to have less overall pain in the long run. Just a thought. Let us know how you're doing now.
        Things that work:
        HEATING PAD!
        hot baths
        ice packs
        vaginal suppositories-->valium/lidocaine
        at-home bladder instillations:
        Heparin(40,000IU) & lidocaine(15mL)
        Tramadol 50 mg. 4x day
        Gabapentin 900mg. 3x day
        Zanaflex as needed
        Dye-free Benadryl at night

        Things that don't work (for me):
        Negativity!
        Amitriptyline
        Elmiron

        Always looking to chat!
        email: [email protected]

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