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    Back to Back UTI'S & Burning Pain

    Hello Everyone,

    I have not been well since May. I've had 4 uti's since may and have been on 4 antibiotics. I have been having neuropathic burning pain in feet and legs. This would feel better when I would sit down. I upped my dose of Neurontin to 2700mgs. a day. But to no avail. In Aug Neuro weaned me off of Neurontin and started me on Lyrica 100mgs twice a day.

    About a wk ago when I took my last antibiotic, I was sitting down when my feet started burning then my legs on up until my arms and hands were on fire. I called my DH who was about two hours away and told him I needed to go to the ER. Of course I was crying at this time because it hurt so bad.

    I was able to get my Neuro's nurse on the phone and I was crying so bad and she told to take something to calm me down and go to the ER. I took a half of mg of Xanax. and as I started to calm down my pain started to get better, by the time I got to ER my pain turned to a buzzing, bug crawling feeling.

    I was tested for a UTI and it was clear. Blood work showed I had very low sodium. They gave me an IV of sodium. The ER neuro said it could have been caused by coming off of Neurontin and going on Lyrica. They sent me home with an addictive pain med. called Tramadol which I did take one when pain started again on feet and legs and it helped.

    I have since started taking 100mg. of Lyrica 3 x a day. I still have some burning pain but not anything that sent me to the ER. I did have a couple of days when I felt no pain but now I still have some when I walk, which I am tolerating.

    I believe God is with me everyday and it helps me to get thru ea day. For those who pray I could use a prayer.

    I know how hard this disease is on everyone and I Thank you for being here and listening.
    God Bless Us All

    #2
    Originally posted by REG53 View Post
    Hello Everyone,

    I have not been well since May. I've had 4 uti's since may and have been on 4 antibiotics. I have been having neuropathic burning pain in feet and legs. This would feel better when I would sit down. I upped my dose of Neurontin to 2700mgs. a day. But to no avail. In Aug Neuro weaned me off of Neurontin and started me on Lyrica 100mgs twice a day.

    About a wk ago when I took my last antibiotic, I was sitting down when my feet started burning then my legs on up until my arms and hands were on fire. I called my DH who was about two hours away and told him I needed to go to the ER. Of course I was crying at this time because it hurt so bad.

    I was able to get my Neuro's nurse on the phone and I was crying so bad and she told to take something to calm me down and go to the ER. I took a half of mg of Xanax. and as I started to calm down my pain started to get better, by the time I got to ER my pain turned to a buzzing, bug crawling feeling.

    I was tested for a UTI and it was clear. Blood work showed I had very low sodium. They gave me an IV of sodium. The ER neuro said it could have been caused by coming off of Neurontin and going on Lyrica. They sent me home with an addictive pain med. called Tramadol which I did take one when pain started again on feet and legs and it helped.

    I have since started taking 100mg. of Lyrica 3 x a day. I still have some burning pain but not anything that sent me to the ER. I did have a couple of days when I felt no pain but now I still have some when I walk, which I am tolerating.

    I believe God is with me everyday and it helps me to get thru ea day. For those who pray I could use a prayer.

    I know how hard this disease is on everyone and I Thank you for being here and listening.
    Hi REG53

    So very sorry to learn about the rough time you have been enduring, with UTI's and body pain/burning.

    Sending prayers and healing thoughts your way.

    Hope you improve each day going forward.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Thank you KoKo, for your prayers and your sweet post it means a lot.
      God Bless Us All

      Comment


        #4
        Originally posted by REG53 View Post
        Thank you KoKo, for your prayers and your sweet post it means a lot.
        REG53

        We miss you at the Exercise Check-In Group, but we do understand that you have not been well, and need to take care of yourself in order to get better.

        Wishing you wellness!

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          KoKo, Thank you. I haven't been exercising but I want to get started back. Hopefully soon.
          God Bless Us All

          Comment


            #6
            Originally posted by REG53 View Post
            KoKo, Thank you. I haven't been exercising but I want to get started back. Hopefully soon.
            REG53

            When you're better and feeling strong enough, it will be wonderful to have you back with us!

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              REG- I'm so sorry to hear that you've experienced so much pain and too many UTI's lately.

              Prayers that the Lyrica continues to work for you and you feel much better soon!
              Yes, we've missed you in our group and hope you join us again when things level out.

              Sending good energy your way
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                So sorry to hear that it has been a rough stretch for you. Saying prayers that you have turned the corner.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Thank you Seasha and pennstater both of you are so kind.
                  God Bless Us All

                  Comment


                    #10
                    I can't believe I left this out. I have also fallen 4 times since July. I've had a lot of pain and soreness from the falls but I am okay now.

                    This morning my rt foot and leg are burning. If it gets to bad I am going to call neuro about going up again on the Lyrica. I don't know what the highest dose is. I may post on the pain thread about Lyrica.
                    God Bless Us All

                    Comment


                      #11
                      Originally posted by REG53 View Post
                      I can't believe I left this out. I have also fallen 4 times since July. I've had a lot of pain and soreness from the falls but I am okay now.
                      Oh dear! Glad to know that you're ok now, REG53!

                      Take Care (and no more falls, hopefully!)
                      PPMS for 26 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        So sorry for your MS challenges.

                        One suggestion for UTI prevention. Take D-Mannose supplement. It comes in either a powder or a capsule and can be purchased online at Amazon or often at your local health food store. Some sources believe that using the powder is better because it is less expensive and does not contain additional ingredients. Just take the daily dose, every day. I originally read about it here, on MSWorld, and I'm so glad I did.

                        I used to have UTI's multiple times per year. I have not had any UTI's for many years now.

                        It is not good for our bodies to use antibiotics. Antibiotics promote leaky gut syndrome, which only adds to our MS problems. It would be a much healthier option to prevent your UTI's.

                        Here are some additional home remedies for UTI's:
                        https://www.stoputiforever.com/treat...-remedies-uti/

                        And some additional information on prevention:
                        https://www.stoputiforever.com/prevention/prevent-uti/
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #13
                          Thank you Mamabug, for the links, I will read over them.

                          I use to be on low dose of Macrobid once a day for years and I would still get a few uti's. I quit taking them I quess a yr. or so ago and I started having many more.

                          I usually see a urologist NP, she put me on methenamine ( bladder antiseptic) once a day. and vit. C
                          I was already taking powdered D-Mannose 1 t in water twice a day, 2 cranberry pills twice a day.
                          I really wasn't drinking enough water. All of this did not help.

                          She has put me back on Macrobid and taken me off methenamine and vit. C. and try to drink 64oz. water a day which I can only do when I am at home (if you get my drift).. I will stay on all the other for now.

                          I do self cath. twice a day now. I do everything the dr. tells me to keep clean. I really do work hard to keep clean.

                          I started taking a probiotic called Primadophilus Optima women 90 billion active probiotics once a day.

                          I am on Ocrevus which can cause infections (not sure about uti's) but I did have an infusion between the infections, I did not show positive for a uti when I had it. (Who Knows)
                          God Bless Us All

                          Comment


                            #14
                            Reg --
                            It sounds like you've tried lots of strategies. I hope you find something that works for you.
                            ~ Faith
                            MSWorld Volunteer -- Moderator since JUN2012
                            (now a Mimibug)

                            Symptoms began in JAN02
                            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                            .

                            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                            Comment

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