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  • #1

    Old Rheumy, new meds, again!

    As some of you know......I've been on a long hard road these past few months....
    I've had severe body pain, both arms, both legs, both hips, both shoulders......etc....
    I started out going to my reg. dr. who thought I was just depressed....he gave me Cymbalta and that gave me terrible stomach pain......
    Then I went to Dr. B a Rheumatologist. He thought I had Polymyalgia and tried me on high doses of Prednisone.....to no avail. I also had 4 MRI's, lots of blood work. SO he put me on Lyrica for pain. OH ya, I also have a Carnatine deficency.
    Then Dr. B sent me to a Neurosurgeon for nerve conduction test (that came out ok)
    Then Dr. B sent me to Dr. S...an older and wiser Rheumatologist who ordered 8 xrays and more extensive blood work and a temple ultrasound (that came back ok). He agreeded that I don't have Polymyalgia or Fibro but thought maybe I was having a reaction to Durasphere... a substance my Urologist injected around my urethra 4 yrs ago. Then he decided it 'probably' wasn't that, and even it it was a reaction, removing the stuff wouldn't end my problem now. Then he decided it was a central processing problem in my brain that wasn't sending out the right pain receptors and that since the Lyrica was giving me major GERD pain by that point that I should stop taking that and just exercise, walk and get natural endorphines going......well that's all find and good...but I'm still in pain.
    SO I saw a pain management dr and he couldn't help me because he only helped with pain that connected with the spine (it didn't mention that in his ad!) So he sent me back to Dr. B.
    I saw Dr. B yesterday and he changed my pain med to Neurontin and changed my Nexium to Zegerid. Now he's ordered a nerve biopsy, still trying to figure out why I'm in pain......and a Gastric Emptying and Esophageal Transit test......UGH! He thinks maybe my stomach is emptying too slowly, meds and foods aren't going thru fast enough.......
    I'm going to see a therapist tomorrow. I'm SO depressed by all this that I felt it was time to bring in the troops. I can't do this any more. My husband is great and very supportive.....but still......I just can't take the pain and all these damn tests and running to dr.s all the time, and missing work (I've been off work for 3 weeks now... and will probably miss the rest of the school year)...........well anyway.......thanks for listening........I just needed to vent tonight........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:
    Tags: None
    • #2
      Vent away.....it makes you feel better.

        Comment

        • #3
          (((((((((hugs)))))))))))
          Yes it helps sometimes just to vent and let it all out..Sure hope you get some relief soon..
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment

            • #4
              Roxie,

              Sending you lots of positive thoughts and hugs. I have had the gastric emptying study done and it did provide some helpful information. Hopefully it will do the same for you and you can find a way to get your meds to work. If you have any questions feel free to PM.

              April

                Comment

                • #5
                  HI April, Thanks for the thoughts and hugs. Venting does help some......
                  When you had the gastric emptying test.....was it the 90 min or the 4 hr? Also did you just have to lay there that whole time while you were being scanned?? Thanks for any info! 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
                      I think it was the 90 min. I went in after fasting the night before and they had me eat scrambled eggs that they injected radioactive dye into and toast and milk. I didn't have to eat it all. Afterwards, I had to lie there while they scanned. After 90 minutes my food had not moved so they ended the study. I was then diagnosed with gastroparesis. In other words, I have a slow transit time. It can cause lots of problems. I was constantly nauseous and never hungry. I still have spells where it acts up. I was put on two meds and stopped taking them because the side effects were not fun for me. I have since started eating 4-5 small meals a day and that has helped me digest more normally and the problems are not as severe as they used to be. Let me know if you have any more questions and of course let me know how it goes.

                      April

                        Comment

                        • #7
                          Roxie I am so sorry that you are going through all of this right now. Something is wrong and don't stop until you find an answer. I just hope you find the strength to continue to do tests to figure out what is happening.

                          Just sending many hugs, Trishann

                            Comment

                            • #8
                              HI Again April, Thanks for all the info. It doesn't sound like a fun test....eating radio active eggs.....gees! I can't imagine just laying there for 90 min! Gosh that's a long time! I'll be glad when that's over with......and then the nerve biopsy......ugh!!!!!! I hope they figure out what my problem is with all this testing! 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

                                • #9
                                  Trishann, Thank you! I appreciate the hugs.
                                  I saw the therapist today. She was really nice and took a lot of my history and I'll see her again next Monday. I'm glad I've decided to take the step for therapy. 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

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