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Thread: Pain in kidneys

  1. #1
    ICN Member
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    Pain in kidneys

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    Complete fatigue and pain in kidneys!!!
    Along with the burning pelvic and bladder!
    Even my legs hurt!
    Can anyone else relate to this??
    What do you do for any sort of comfort??
    I'm seeing more and more that CBD and medical marijuana is being used for IC!!
    Has anyone had experience with using this type of therapy and how did it go with the pain control?

  2. #2
    ICN Member jeanniebug's Avatar
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    Re: Pain in kidneys

    Hi Sameboat,

    I'm sorry for the late reply but I just came across your question. I've DEFINITELY had flank pain, or what feels like kidney pain, very badly in fact, in my worst flare ups.

    It will also hurt down into my legs, vaginal area, lower back, even my feet and hands will ache badly. And in these worst flares...the lymph nodes in my neck (under the ears) and under my arms throb and hurt. It's crazy, like my whole body becomes inflamed and it makes me feel like I have the flu. The fatigue is BAD during these flares. Sometimes I'll even run a low fever.

    Whenever it gets that bad, I get to the Doctor to be checked for UTI and/or possible kidney infection.

    The crazier part is...usually I do NOT have an infection, it's chalked up to a very nasty IC flare. However, a few times, my tests DID show a UTI and just a few months ago, it had turned into a kidney infection. In those cases, I was put on antibiotics and started to feel better pretty quickly.

    If it's verified it's NOT an infection, that's when I pull out all my "big guns" for pain control: My pain meds, antispasmotics, heating pad, TENS unit, pretty much everything in my arsenal of IC pain control. And...this part is VERY important...I go on a super-strict IC diet. Very bland...no seasonings of any kind, lots of water. And I drink my DMannose powder with water throughout the day.

    Sometimes it takes me several days to get a flare this bad under control.

    I've talked to my Urologist about the weird lymph node pain, low fever, leg pain, "kidney" pain, etc. He said some of his IC patients do experience these symptoms with bad flares. He also stressed that it's extremely important to get checked for infection if it hurts this bad, because with IC we can't tell the difference sometimes...and you never want a UTI or kidney infection to go untreated.

    For me, these worst flares did not start to lessen until I got under the care of a Pain Management Clinic doctor.
    These type flares had be bed-ridden for the better part of a year, and it really sucked.

    All this said, I have additional diagnosis other than IC, that can cause extreme body pain/fatigue/lymph swelling etc.

    Sometimes it's hard to tell what's coming first, the chicken or the egg!

    All my meds and diagnosis are listed in my signature below.

    I hope this feedback helps. Feel free to PM me if you want.

    Sending healing hugs,
    Jeannie
    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

  3. #3
    ICN Member
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    Re: Pain in kidneys

    Wow.
    Very nice of you to respond with such detail...I really appreciate all of your advice and experience!
    I too was told that I didn't have bacteria in my urine for well over a year,then my urologist finally did a culture and found I had what is called a "super bug" antibiotic resistant!
    Gentimiacin injections is what he ordered and believe it or not....ALL of my symptoms are gone or down to a minimum now, including the swollen lymph nodes!!!
    I had all of these things also!

  4. #4
    ICN Member jeanniebug's Avatar
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    Re: Pain in kidneys

    Quote Originally Posted by Sameboat View Post
    Wow.
    Very nice of you to respond with such detail...I really appreciate all of your advice and experience!
    I too was told that I didn't have bacteria in my urine for well over a year,then my urologist finally did a culture and found I had what is called a "super bug" antibiotic resistant!
    Gentimiacin injections is what he ordered and believe it or not....ALL of my symptoms are gone or down to a minimum now, including the swollen lymph nodes!!!
    I had all of these things also!
    WOW!!!!! That is GREAT news for you! What type of culture did your urologist do?? Mine does the kind where they send it to a lab and "spin" it...more in depth than a dipstick check.

    How many injections of Gentimiacin did you have to get, and where did they inject the medicine?
    Jeannie
    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

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