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Another trip to the Rheumy...& another new problem!

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  • #1

    Another trip to the Rheumy...& another new problem!

    HI All,
    Well MAYBE my new Rheumy has hit on the cause of my pain...or maybe it's an additional problem.....we aren't sure yet.
    I still have severe pain most of the time. He originally thought it was Polymyalgia Rheumatica because of the pain in my arms and legs. He started out putting me low doses of Prednisone and now has raised it to 2-10mg Pred. twice a day....I'll be on that till next Tues. IF I'm still in pain (and at this point he thinks I still might be) then my problem isn't Poly, but another problem.
    My latest bloodwork showed I'm very low in Carnitine so now I have to take supplements for that and if I'm still in pain on Tues. he wants me to have a nerve biospy done to see why my body isn't absorbing the Carnitine into my cells. I also have an Open MRI (no more closed ones for me!) scheduled for Monday, a full body scan....and then the next week a nasty muscle/nerve/needle test done at the Neurosurgeon....UGH!!!!! I hate needles!!
    Has anyone ever been low on Carnitine before?
    OHH forgot to mention.....I have Bronchitis now too......as if I needed another health issue to deal with! I knew I had a cold and sniffles but didn't realize it was that bad! So now I'm on antibiotics that will, I'm sure!, give me another yeast infection!
    I'm SO past 'wit's end' here with all these health issues from dealing with all this rotten pain.
    Now I'm going to have to take at least one more week off work (I'm sure my Principal is going to love hearing that news!) Plus I'm way past using all my sick days and sub-dock days at work.....so now my check will be cut drastically......UGH!!!!!!
    Sorry for venting here...I'm just tired, irritable, in pain......and just plain fed up with it all.......Thanks for listening....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
      Oh no Roxie,
      I'm so sorry that you're in so much pain and they're still not sure what is going on. I hope that they figure it out soon and you get some relief. I know missing all that time off of work can be upseting. Have you filed for FMLA? If you've been at your job for at least a year then you can file and you can't lose your job for having off for a medical condition. It allows you 12 weeks off in a calendar year so that's pretty much a week a month which I know I would never use that much. I know that you would still have your paycheck cut but it would be reassuring to know that you had job security. I will be coming up on a year at my job next month and I am def going to fill out the paperwork for FMLA then. Sending you big soft squishy ((((((((hugs)))))))))
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

        Comment

        • #3
          HI Griffsmom,
          Yes I have filed for MFLA I have been at my job for 13 yrs now. But thank you for the heads up. I need to read all the fine print and get my paperwork in right away.
          I have just been so worn down from the pain, dealing with dr.s, and having medical tests done. Healthy people have no idea what we 'sickies' go thru!
          I hope you have a good 'bladder day! 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


              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.               [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

                Comment

                • #5
                  Sending s and wishes that they find out what's going on ASAP!!!
                  ****
                  Jen

                  *Diagnosed with severe IC in 2004
                  *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                  *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                  *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                  **I am not a medical authority nor do I offer definitive medical advice. I 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

                    • #6
                      Oh, Roxie -- how awful. It's just one thing after another, isn't it? I was going through a series of disasters like that a while ago, and I felt like the mole in a whack-a-mole game; every time I got my head up, BAM! down you go. But it did get better, I'm down to only two or three disabling conditions LOL.

                      Never apologize for venting! Sometimes you just have to. We all do. That's one of the functions of a support group.
                      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                      Wishing you happiness and good health, and all the best out of life.

                      Peace, Carolyn
                      ___________________________________________________

                      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                      On the Beach with IC

                        Comment

                        • #7
                          HI Berkshire Road,
                          Gosh I SO know what you mean about the whack-a-mole game! I can't seem to keep my head up at all....and it's SO expensive to have these health problems! We spent almost $200 yesterday between meds and dr. visit. Now I have to have another MRI on Monday and go see a Neurologist and have 2 tests by him....$$$$$$$$ AND I have insurance! I SO feel for those who are fighting this health problems without insurance or crappy insurance.
                          I'm really thankful for everyone here who reads posts and writes back.....It really means a lot to me to know I'm not in this alone and there are others out there hurting as much as I am.......because in the low moments it can very lonely even with my very supportive husband! Thanks to everyone here! 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
                              for healthy days!!! angie

                                Comment

                                • #9
                                  Roxie I am so sorry you are feeling so bad. I hope whatever it is they will find the cause or find a way to get some relief from it. It is so aggravating to keep going for testing, but I hope this will find some answers for you. I am glad to hear that you are able to have an open MRI, at least that will take alittle stress off.

                                  Hope you start feeling better soon,
                                  Sending hugs, Trishann

                                    Comment

                                    • #10
                                      HI Trishann,
                                      Thank you! I actually am starting to feel better today. The dr. put me on 40mg of Prednisone for 4 days to see if that much of an increase will help with the pain or not. He said he didn't think it would but wanted to find out for sure. I'm glad he's covering all the bases cause I'm very tired of the dreadful pain. SOOO....it's kinda a 2 bladed sword......IF the increase in Predinsone helps.....then I have Polymyalgia Rheumatica and will have to be on steroids for a few months.....till we can calm it down and then start decreaseing them......Being on Steriods isn't a good thing.....but if it helps.... Seems we just can't win with all these health problems! 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

                                        • #11
                                          I am glad you are feeling better. Yes I know what you mean about one thing after other but once in awhile we do find something that can help us, and that itself is a miracle. I hope things will continue to work for you and then maybe your dose can be decrease and won't have to stay on steriods. I know that pain can really cause you not to be able to sleep and stuff and that is not good at all. I wasn't take pain pills before and did not get much sleep and I thought I was going to not make it. I was about to take anything to be able to get some sleep, I just couldn't take it any longer. My doctor gave me some pain pills, and I take it at night, and I get at least 4 hours without pain. I get these leg pains that keeps me up but the one good thing about this pain pill it helps with my legs and bladder.

                                          It is so important to find something that will work for you. Again I hope you continue to feel better.

                                          Sending hugs, Trishann

                                            Comment

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