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  1. #1
    ICN Member
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    May 2008
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    PA
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    Question Scaroiliac Joint Dysfunction ?

    I am doing instillationsweekly (more if needed) and going to pt twice a week i went to a so called biofeedback training and the therepist said my pelvic floor is off the charts so tight and my kegels arent helping so far and i am continuing pt but it hurts so bad. I suffer from Sacroiliac Joint Dysfunction,is this normal for people with IC and PFD? They say im frozen whatever that means and the pt requested that i wear a "SI JOINT LOCK" belt for 6 months. I have never heard of SIJD and was wondering if others with our condition suffer with this? my lower back just kills me and im already taken a significant amount of pain meds. My PT says they dont want to continue pt due to extreme pains i keep having. Is this normal? wondering what others have done? Doctor is talking about undergoing neuromodulation but its not an interstim its something to help with pain.. IM FED UP just wondering what others have done for this problem thanks
    Cara Age 25
    Single mother of Isaiah my big 4 year old hes been diagnosed with ADHD,OCD,ODD and Aspbergers.
    My dx Severe IC,PFD,VVS,IBS,Fibro,Ms,And RSD for years now although only diagnosed since 06

    Treatments:Trigger Point Injections ,TENS, Bladder Instillations weekly and rescue,Botox Injection, bladder distension,full hysterectomy,pain management and Nerve Blocks every 4 weeks,PT,Biofeedback,Acupuncture,interstim(currently only have left side still functioning with little relief,right side became infected after 2 surgery had to have emergency surgery to remove sill having major issues with site for the last 6 months)
    Medications Tried : Just to name a few i dont think there is anything out there i havent tried ...Enablex,Detrol La,Bitropan, Pyridum lidocaine hydrochloride jelly,soma, morphine, ms contin,all non narcotics and nsaids,currently have strong tolorance to all narcotics (i feel like a drug addict)
    Current Medications: Elmiron (3x daily 100 mg) Hydroxyzine (3x daily 50 mg) daily Valium (2mg 2x daily) Prelief (2 at every meal) Imipramine Hcl (75mg at bedtime) Ativan (1 mg 3x daily as needed) Dualidid 8mg every 3 hours round the clock for pain,Compazine 10mg and Phenergan 25mg along with Ondansetron ODT for nausea and vomiting every 6 hrs,Atropine-Estradiol 0.2%/0.01% twice daily and Instillation of Marcaine and 2 vials of Mucosa Compositum every week, B&O Valium
    GOING CRAZY FEEL LIKE IC IS TAKING OVER

  2. #2
    ICN Member
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    May 2008
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    PA
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    nobody has any suggestions?
    Cara Age 25
    Single mother of Isaiah my big 4 year old hes been diagnosed with ADHD,OCD,ODD and Aspbergers.
    My dx Severe IC,PFD,VVS,IBS,Fibro,Ms,And RSD for years now although only diagnosed since 06

    Treatments:Trigger Point Injections ,TENS, Bladder Instillations weekly and rescue,Botox Injection, bladder distension,full hysterectomy,pain management and Nerve Blocks every 4 weeks,PT,Biofeedback,Acupuncture,interstim(currently only have left side still functioning with little relief,right side became infected after 2 surgery had to have emergency surgery to remove sill having major issues with site for the last 6 months)
    Medications Tried : Just to name a few i dont think there is anything out there i havent tried ...Enablex,Detrol La,Bitropan, Pyridum lidocaine hydrochloride jelly,soma, morphine, ms contin,all non narcotics and nsaids,currently have strong tolorance to all narcotics (i feel like a drug addict)
    Current Medications: Elmiron (3x daily 100 mg) Hydroxyzine (3x daily 50 mg) daily Valium (2mg 2x daily) Prelief (2 at every meal) Imipramine Hcl (75mg at bedtime) Ativan (1 mg 3x daily as needed) Dualidid 8mg every 3 hours round the clock for pain,Compazine 10mg and Phenergan 25mg along with Ondansetron ODT for nausea and vomiting every 6 hrs,Atropine-Estradiol 0.2%/0.01% twice daily and Instillation of Marcaine and 2 vials of Mucosa Compositum every week, B&O Valium
    GOING CRAZY FEEL LIKE IC IS TAKING OVER

  3. #3
    ICN Member
    Join Date
    Jun 2008
    Location
    Newport Beach, CA
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    23
    Have you tried Cymbalta? It's an antidepressant and it has worked wonders for me. Without the side affects of Elavil and others I've tried (which, believe me, is probably everything!). My pain management doctor, who is my savior, prescribed 120mg of Cymbalta and, originally, Klonopin. I didn't like the Klonopin so he switched me to Zanax. Over time I stopped taking the Zanax and just the Cymbalta and I'm doing great. I still get flares on occassion, when I have a yeast infection, ovarian cyst, chronic fatigue flare, etc., but they are mild and I know they are TEMPORARY so it makes it much easier to deal with. On those days I take Vicodin. I wish you the best of luck!

  4. #4
    ICN Member tkdrew's Avatar
    Join Date
    Apr 2005
    Location
    Hampton,TN
    Posts
    52

    SI joint dysfunction

    Hi! I also have SI joint dysfunction. They have given me injections in my SI joint and it helps. Some people only have to have one and some have to go back every year or so. I've had 2 total. I feel another SI attack coming on. I have never heard of the belt...let me know if it helps you. Good luck. I don't know if the SI and IC are related but I've wondered too. Between IC,SI, Ibs and PCOS...I feel like I'm falling apart and I'm 30. Its so frustrating. No one else I know have all these problems. If you need anything, email me at tkdrew2002@embarqmail.com. Take care!

    Kristi
    God Bless,

    Kristi

  5. #5
    ICN Member
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    Can I ask what are the specific symptoms to SJD?

  6. #6
    ICN Member
    Join Date
    May 2008
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    PA
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    kristi,.. wow i do understand ic,si,ibs im 23 i feel like im 60 i have had multiple shots to help with it.. i think its a waste of time have u heard about some sort of neurostim thing to help with the SI?
    Cara Age 25
    Single mother of Isaiah my big 4 year old hes been diagnosed with ADHD,OCD,ODD and Aspbergers.
    My dx Severe IC,PFD,VVS,IBS,Fibro,Ms,And RSD for years now although only diagnosed since 06

    Treatments:Trigger Point Injections ,TENS, Bladder Instillations weekly and rescue,Botox Injection, bladder distension,full hysterectomy,pain management and Nerve Blocks every 4 weeks,PT,Biofeedback,Acupuncture,interstim(currently only have left side still functioning with little relief,right side became infected after 2 surgery had to have emergency surgery to remove sill having major issues with site for the last 6 months)
    Medications Tried : Just to name a few i dont think there is anything out there i havent tried ...Enablex,Detrol La,Bitropan, Pyridum lidocaine hydrochloride jelly,soma, morphine, ms contin,all non narcotics and nsaids,currently have strong tolorance to all narcotics (i feel like a drug addict)
    Current Medications: Elmiron (3x daily 100 mg) Hydroxyzine (3x daily 50 mg) daily Valium (2mg 2x daily) Prelief (2 at every meal) Imipramine Hcl (75mg at bedtime) Ativan (1 mg 3x daily as needed) Dualidid 8mg every 3 hours round the clock for pain,Compazine 10mg and Phenergan 25mg along with Ondansetron ODT for nausea and vomiting every 6 hrs,Atropine-Estradiol 0.2%/0.01% twice daily and Instillation of Marcaine and 2 vials of Mucosa Compositum every week, B&O Valium
    GOING CRAZY FEEL LIKE IC IS TAKING OVER

  7. #7
    ICN Member
    Join Date
    May 2008
    Location
    PA
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    45
    Stacey323: The most common symptom of SI joint dysfunction is pain. Patients often experience pain in the lower back or the back of the hips. Pain may also be present in the groin and thighs. In many cases it can be difficult to determine the exact source of the pain. Your physician can perform specific tests to help isolate the source of the pain. The pain is typically worse with standing and walking and improved when lying down. Inflammation and arthritis in the SI joint can also cause stiffness and a burning sensation in the pelvis. My doctor says my si joint is frozen and my ligaments in between my pelvic bone and sacram and very week im doing pt it is killing me but im going to keep going till i cant do it anymore
    Cara Age 25
    Single mother of Isaiah my big 4 year old hes been diagnosed with ADHD,OCD,ODD and Aspbergers.
    My dx Severe IC,PFD,VVS,IBS,Fibro,Ms,And RSD for years now although only diagnosed since 06

    Treatments:Trigger Point Injections ,TENS, Bladder Instillations weekly and rescue,Botox Injection, bladder distension,full hysterectomy,pain management and Nerve Blocks every 4 weeks,PT,Biofeedback,Acupuncture,interstim(currently only have left side still functioning with little relief,right side became infected after 2 surgery had to have emergency surgery to remove sill having major issues with site for the last 6 months)
    Medications Tried : Just to name a few i dont think there is anything out there i havent tried ...Enablex,Detrol La,Bitropan, Pyridum lidocaine hydrochloride jelly,soma, morphine, ms contin,all non narcotics and nsaids,currently have strong tolorance to all narcotics (i feel like a drug addict)
    Current Medications: Elmiron (3x daily 100 mg) Hydroxyzine (3x daily 50 mg) daily Valium (2mg 2x daily) Prelief (2 at every meal) Imipramine Hcl (75mg at bedtime) Ativan (1 mg 3x daily as needed) Dualidid 8mg every 3 hours round the clock for pain,Compazine 10mg and Phenergan 25mg along with Ondansetron ODT for nausea and vomiting every 6 hrs,Atropine-Estradiol 0.2%/0.01% twice daily and Instillation of Marcaine and 2 vials of Mucosa Compositum every week, B&O Valium
    GOING CRAZY FEEL LIKE IC IS TAKING OVER

  8. #8
    ICN Member bladder's Avatar
    Join Date
    Mar 2007
    Location
    BC, Canada
    Posts
    156

    SJ pain

    I am seeing my chiropractor for Sacroiliac joint pain. I am also going for acupuncture. I am wondering if it is related to IC as well....
    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

  9. #9
    Support Leader Julie B's Avatar
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    Mar 2000
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    Clarkston, Michigan
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    3,346
    I ended up with SIJD last year and was bedridden for about a week. They originally thought it was a problem with the kidney because the pain was in that area. Once it settled down a bit, I had the cortizone shot (helped, but tough to take the first time around) and PT (which I don't think helped at all).

    My best course of treatment is walking and Epsom Salts baths.........If I don't do my 10,000 steps a day I know it.

    I don't think there is any relation to IC unless it is because we can be fairly sedentary on occasion.
    Hugs, Julie B

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