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Intense burning/tingling pain in my bladder and legs

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  • Intense burning/tingling pain in my bladder and legs

    Hello I am a C5 Quad and have been injured since 2003. I cath every 4 to 6 hours. Back in November 2009 I started having this burning feeling in my bladder and come to find out I had a bladder stone that we removed. Ever since then I've had this burning/tingling feeling and it's never really went away. When the burning/tingling is bad in my bladder it also goes down to my legs. I've tried all kinds of things and nothing seems to help. I am currently taking the Ditropan and neurontin and they seem to help a little but only for short time. I have had a CT recently, i'm going to the urologist today so he can scope my bladder, and get the results of the CT. I'm pretty confident that we won't find any stones or anything else wrong because I've done this 2 or 3 times and this pain will just continue… It's really annoying and I'd love to get it stopped. Has anybody else had this feeling and if so how did you get rid of it or manage it at least? I'm pretty desperate so anything will help!! Thanks, Jeffrey

  • #2
    First of all, are you using caffeine in any form?? This is a major bladder irritant. Next, ask your doctor if you could possibly have interstitital cystitis (IC). A bladder biopsy is often needed to make this diagnosis. How much Ditropan (for bladder spasm)? How much Neurontin? When did you last have urodynamics, and what is your PdetMax (maximum bladder pressure when storing urine)??

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


    • #3
      All I normally drink is water, occasionally I drink coffee but it's decaf. A lot of the symptoms from IC seem to describe what I feel so I will definitely ask my doctor about it. For Ditropan I take 5mg 4 times a day and for Neurontin I take 600mg 3 times a day. Yesterday I had a CAT scan and urinalysis and both came back clean. I don't think I've ever had urodynamics or PdetMax done. I told my urologist about this pain and he said everything as far as my bladder goes is okay so I should see my family doctor regarding the pain. My urologist doesn't seem to be real SCI savvy if you will. He's a nice guy and he's been a urologist for a long time but just doesn't seem to ever give me any options or suggestions considering I have UTIs quite often and this pain/discomfort. He normally just does a urinalysis and gives me an anabiotic which I don't like and that's why I'm in the process of searching for a new one. It's very difficult.


      • #4
        In addition to the above response I sent you a private message about a year ago or so inquiring about a good SCI urologist and you mentioned you had a friend that works at Indiana University Hospital. You advised me to ask for a good neurologic urologist and you mentioned your friend works there. What is your friends name?


        • #5
          I have that same pain but mines every otherday my uro says im fine but I may seek another opinion
          to alcohol the cause of-and solution to-all of lifes problems [homer simpson]


          • #6
            Originally posted by SCI-Nurse
            First of all, are you using caffeine in any form?? This is a major bladder irritant.

            I had the same problem and quit the caffeinated coffee. My urologists ask if I were taking any cranberry suppliments which I was. He told me my bladder was very acidic and to stay away from anything cranberry and to drink as much "real" lemonade as I could stand. A couple of days later all the burning had vanished and is still not burning some 15 years later.

            Good luck.
            ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne


            • #7
              What is "real" lemonade, Millard; straight lemon juice? Are you still drinking it?
              2010 SCINet Clinical Trial Support Squad Member
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