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  • EDEMA

    Hello, New to boards but unfortunately not to IC. Have had for 11 years developed when I was 19.

    Does anyone experience edema in there legs(all over but mainly my legs/hands(fingers)? I get such bad edema(for 11 years now!!) that I have a hard time walking sometimes. My ankles swell so much they are as big as my calves at times. I have tried everything from natural to prescription meds without success.

    I developed IC after a few UTI(s). The weird thing is that when I had my UTI before my IC, I also swelled like this, even more than now. I also have very enlarged lymph glands below my ear as well (the parotid glands). These too were enlarged prior to my IC when I had my UTI, but again much larger, the size of a golfball.

    Has anyone experienced these weird symptoms? My body seems to have these bizarre symptoms, along with the typical IC symptoms, that I can't seem to find anyone having? This disease is such a FRICKIN mess! People truly do not understand unless they have it.

    Thanks for any responses/info to my post!

  • #2
    Welcome to the ICN. Sory for your problem. The only place I seem to retain is the "IC belly". Are you being treated for retention over all? I would talk to your doc about it. Hugs, Kathi grouphug
    One Day At A Time
    Kathi

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    • #3
      Edema is not usually a part of IC. You really need to see your doctor. And be sure to let him/her know of all medications, including over the counter and herbals.

      I had gross swelling of my feet and ankles from a blood pressure medication --- my doctor knew immediately what was the problem by reviewing my medication list.

      Sending healing thoughts,
      Donna
      Stay safe


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      • #4
        Hey Mooie,

        Many things can cause edema. Go back to your Drs. and ask what is causing this edema in your body, it may be easily treated. Demand a diagnoses for this it could be simple and with treatment get better.

        Do you have any pain or numbness with this swelling? Did this come on slowly or all of a sudden? Explain your symptoms like you did here.

        I also had bladder symptoms really young. As I grew up I slowly was developing edema and yet I was still normal weight. All during this time my bladder symptoms continued to get worse. Finally some Drs. told me that I had IC, and was the most severe patient that they had ever had.

        My bladder was so bad, that the Drs. ignored all of my other symptoms. I was so tired, cold, had carpal tunnel in my hands and feet, migraines, forgetful, dry skin, puffy face, muscle cramps, menstrual problems, and swelling in hands feet, and difficulty losing weight. I used to wake up in the night and my hands and feet would look so swollen that no veins or tendons were showing under the skin.

        I was in my 30's when I learned that I had Hypothyroidism (too little thyroid hormone). When treated with thyroid hormone, my swelling in my body went down in just a few weeks! My Dr. explained that it was due to myxedema, a type of fluid gel that accumulates under the skin and throughout your body tissues causing all this swelling and puffiness.

        This may or may not be what is causing your swelling. Your family Dr. should be able to help you with this problem and if he doesn't go to one that will give you an answer. I let it go so long that my edema swelling caused me painful nerve damage!

        God bless you and let us know what your Drs. tell you.
        Silverfox

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        • #5
          Thanks so much for the responses. I swear, my body should be in a museum. I have always had very weird symptoms with my IC and UTI(s). I never had any bladder problems until I was 19 when I got my first UTI. My symptoms with UTI are edema, swollen glands and frequency and that is it. No burning or pain at all, ever.
          I went and got a culture, which showed bacteria and crystals in my urine, took the antibiotics and all the symptoms would go away until about 2-3 months later when I got another infection. Same symptoms, took antibiotics and it all went away.

          Two months later again, got another infection, this time I didn't even know I had an infection until I had a fever and was throwing up. Went to the doctor and he was shocked. He stated that there were so many bacteria colonies in my urine that he couldn't even put a number to it. That is basically when I developed IC.

          Had Hydrodistension- got diagnosis, and went into remission about 3 months after that for 2 years, and I mean full remission. Then after college, moved back to suburbs of Chicago, where I am from, and 3 months later, IC came back. I still believe I am allergic to something either in the air or water or something in the Chicago area, pollution here is terrible!

          Anyway, sorry so long just wanted to give a little history about my background. I did have tons and tons of tests (I am fortunate to have found good doctors) and basically all came back negative, even for hypothyroidism, which actually I do still kinda think I have a slow thyroid. I am always cold, constipated and have very painful menstrual periods.

          Who knows, we all harbor such different symptoms. I think this is why is has been so hard for research to pinpoint a cause or causes for this god awful syndrome. I pray they find something, but until then it is always nice to know that there are people out there like all of us who can lean on each other for comfort and support. God Bless You ALL!!

          Comment


          • #6
            Thanks so much for the responses. I swear, my body should be in a museum. I have always had very weird symptoms with my IC and UTI(s). I never had any bladder problems until I was 19 when I got my first UTI. My symptoms with UTI are edema, swollen glands and frequency and that is it. No burning or pain at all, ever.
            I went and got a culture, which showed bacteria and crystals in my urine, took the antibiotics and all the symptoms would go away until about 2-3 months later when I got another infection. Same symptoms, took antibiotics and it all went away.

            Two months later again, got another infection, this time I didn't even know I had an infection until I had a fever and was throwing up. Went to the doctor and he was shocked. He stated that there were so many bacteria colonies in my urine that he couldn't even put a number to it. That is basically when I developed IC.

            Had Hydrodistension- got diagnosis, and went into remission about 3 months after that for 2 years, and I mean full remission. Then after college, moved back to suburbs of Chicago, where I am from, and 3 months later, IC came back. I still believe I am allergic to something either in the air or water or something in the Chicago area, pollution here is terrible!

            Anyway, sorry so long just wanted to give a little history about my background. I did have tons and tons of tests (I am fortunate to have found good doctors) and basically all came back negative, even for hypothyroidism, which actually I do still kinda think I have a slow thyroid. I am always cold, constipated and have very painful menstrual periods.

            Who knows, we all harbor such different symptoms. I think this is why is has been so hard for research to pinpoint a cause or causes for this god awful syndrome. I pray they find something, but until then it is always nice to know that there are people out there like all of us who can lean on each other for comfort and support. God Bless You ALL!!

            Comment

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