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  • 1st trip to the Rheumatologist on Mon......

    HI!
    I'm going to a Rheumatologist on Monday for symptoms....of what I think....are Fibromyalgia symptoms. I have very achy arms, legs, shoulders, hands and fingers, headaches, blood vessles breaking in my hands and fingers.... When one hand hurts so does the other......arms-arms etc...
    I've realized since joining this site that lots of people who have IC also have Fibro, and IBS or some other related symptom.
    Can anyone give me pointers on what I should be asking or telling, the Rheum on Monday? I talked with Danibelle who is on this site and she gave me some ideas but thought I'd throw the question out to y'all and see if anyone can give me any other thoughts, suggestions etc.... Thanks all! I love this site! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

  • #2
    Hi Roxie,
    My rheumatologist started me on cymbalta and it really helped me. I am having more pain right now and she thinks I may have R.A. or Lupis. They tried me on lyrica but I couldn't take it. They are going to try again in the summer. I am very sorry to hear that yu are having this pain. It stinks doesn't it. But there's a lot they can do. I also take relafen (anti-inflamitory) ambien & trazodone which helps me sleep. Make sure you tell them everything, some things seem unrelated but are. I remember feeling silly telling my dr that I couldn't carry a big purse (because the weight pulled on me so much) but after I did she told me that a lot of womes said the same thing. you might want to write things down. I know that I have problems with memory. Its called fibro fog. If I can help please let me know.

    MelissaT

    Comment


    • #3
      HI Melissa!
      Thanks for writing me. My reg. dr. tried me on Cymbalta and it worked great for 4 days......then I had major abdominal pain. He thinks it clashed with my Elavil. So I'm hoping the Rheum. dr. will have other options for me to try. I've been sitting here making notes about all of my health problems so I won't forget to tell him anything.
      That's interesting about the purses. I have a fairly large bag and I think it makes my hands hurt when I carry it.
      Thank you again for writing. Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        Roxie, I hope you find out what it is and is able to get something for the pain.

        Sending hugs, Trishann

        Comment


        • #5
          Thank you Trish ann.......I hope so too! Thanks for writing! Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

          Comment


          • #6
            Hi Roxie,
            How did the appointment go? Sorry that I haven't written before now, but I have been in a lot of pain. I hope your dr. was able to help you. I know that it can be very frustrating.

            MelissaT

            Comment


            • #7
              HI Melissa, Well it was bad new and worse news at the Rhuematologist appt. He says I have Polymyalgia Rheumatica......and it lasts from 1-15 yrs! The treatment for it is to be on Steroids for at least a year.....but I can't take Steriods because I have Barrett's Esophagus. Soooo he's trying me on muscle relaxers that aren't working....ugh!!!!!!! I'm scheduled for 4 MRI's on Sat......and will get the results from the big blood work up at my next appt. which is next Wed. SO......I'm totally depressed and in pain. I'm not sure what I'm going to do now. I think I'll get a 2nd opinion from another Rheumatologist after the tests results come back......so I won't have to do them twice. Life sure can be rough! Roxie

              Double Spinal Cord Stimulator surgery 8/09
              Unsuccessful MiniArc sling surgery 12/07
              Dx'd Hypothyroid
              Dx'd Chronic Axonal Neuropathy & Myopathy
              June 2007
              Dx'd IC May 2006 (after suffering for 25+ yrs!)
              First Cysto 1979
              First Hydro 1981 (Many treatments since then!)
              Collagin"Durasphere" injections for urethra
              Gall bladder surgery Aug. 2004
              Gastric Bypass Dec. 2004
              Dx'd: Barrett's Esphogus July 2004
              Dx'd: Vaginal Atrophy 2005
              Bladder surgery 2000
              Dx'd: IBS 2000
              Hysterectomy (fibroids) 1999
              Laminectomy 1989
              Dx'd: Degerative Disk Disorder 1989

              For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
              I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

              Comment


              • #8
                Don't ya just get to the point where you don't want to go the the Drs anymore?? Everytime you go they find something else wrong with you. IC seems to come with all kinds of hangers-ons. Maybe you could try some different muscle relaxers if this one isn't working. I just switched to a new one and it's working a little better. Not much better but better. Good luck with the MRI's.

                Comment


                • #9
                  HI Angie!
                  Yes I hate all the 'hangers on' with IC! Every other time I go to the dr. I find a new problem or have a new pain.
                  I'm going to see if this Rhuematologist can give me a different muscle relaxer since the ones he gave me arn't working. I know he's going to resuggest the Steriods......but I just can't go that route with my Barrett's. UGH!!!!!!! Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                  Comment


                  • #10
                    Hi Roxie,
                    I hate to hear about your news from your dr.
                    I have been taking Skelaxin (muscle relaxer). It is not as strong as flexeril but you can take it and work. I hope you can find something that will work for you. I'm sorry that I havent wrote in a while.
                    My fingers have been so sore I couldn't hardly use them.
                    I have never heard of the new things you have been diagnosed with. I'm sorry I can't offer any advice.
                    At least your dr. has found this, now maybe they can find something to help you. It seems like your dr. knows what he/she is doing. I know that isn't a lot of help.
                    Let me know if I can help.

                    MelissaT

                    Comment

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