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I hate Pain!!!!!!!!!

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  • I hate Pain!!!!!!!!!

    I have been in so much nerve/muscle pain these past 24 hrs I'm about to scream!! My nerve/muscle biopsy showed that I have nerve and muscle damage......so now I know what the problem is.....but sure can't get the pain under control with the Lyrica. It's just the pits!
    I'm seeing a Neuromuscular Massage Therapist on Tues. hoping she can help with the pain. She works with Essential oils and massage. Has anyone gone to a Neuromuscular massage therapist? Good or bad results??
    My counselor/therapist that I'm seeing now does hypnosis so she said she would try that when I see her next Thurs. I figure since regular methods of pain relief isn't working I need to move on to alternative medicines. Isn't it sad that we have to struggle to find methods to help with our pain...be it IC, IBS or Nerve pain ........I hope everyone has a good weekend......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
    (((((((((((Roxie)))))))))))) I'm so sorry that you're in so much pain!! I wish there was something I could do to make you feel better. I hope that you get some relief real soon. I'm always here if you need to talk
    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
      Roxie,

      Very sorry you have so much pain. I understand because I also have this condition and I have never had a biopsy. What will the biopsy show if I have a nerve biopsy. Did they biopsy the nerves in the bladder? I was thinking of having a nerve biopsy in my bladder. My bladder looks really good but they tell me my bladder pains come from the sensory nerves in my bladder/urethra.

      With your biopsy could the Docs identfy that the myelin coating on the outside of the nerves being damaged or missing? Did they find that you have axonal nerve damage with a dieing back of axons? Excuse me for my extreme interest in your biopsy results. Just very interested.

      In some reading and talking with my Doctors they explain that if you have some nerve damage, it would be most helpful for them to find the underlying disease that would be causing this. Many times it is very helpful to treat the underlying disease and some will have much improvement of symptoms.

      After so many years, with my own nerve pains and myopathies I learned that I had a underlying illness, and now I take medicine for it and I am very slowly improving. They tell me I suffer with muscle myopathy, sensory neuropathies, and also suffer with the symptoms of a autonomic nerve damage. I did corner one of my Docs on this and asked him just which of my nerves are affected and he explained that it was affecting nerves all through my body. I never realized this, so I was just super shocked with his answer. I felt so sad, that I had been for years from Doctor to Doctor and some good ones told me "It's all in your head" and it never was caused by my head! It was all coming from inside my poor damaged nerves.

      There are many products (perhaps scams I believe) they claim to repair nerves with because they increase circulation. Some people say were helped and then others say they just take their money. I think one is called the rebuilder and I was warned that they claim that it can rebuild the nerves in your mucles. My Doctors have never heard of them and so I was suspicious of these products and their claims of pain relief and nerve repair. My Doc explained that if those machines worked they would be sold openly at every drug store.

      Hope you are able to feel better. It is so helpful not to be in the dark and understand this type of nerve pain. When I have some spare time I try to read about this kind on nerve/muscle pain. Not many people are aware of this nerve/muscle pain so they look at me as though I am crazy when I try to explain.

      Now, because I see that so many with Diabetes who suffer with such painful nerve/muscle myopathy symptoms I have more empathy to their suffering and a better understanding of the importance taking care of the Diabetes first and this will slow or prevent this kind of neuropathic pains.

      I hope you have a nice weekend and would like to talk with you about your nerve biopsy results, and if your planned muscle massage treatments will help you and hope that you feel better soon.

      Best Wishes Silverfox

      Hypothyroidism 3 1/2 grains Armour thyroid
      Neurontin for nerve pain
      diagnosed with sensorimotor polyneuropathy and autonomic nerve damage

      Comment


      • #4
        Roxie
        I'm sorry your in so much pain and having so many other problems as well. I hope the therapist can help you and that you have good results from it. When we're in this much pain, we will try anything! Good luck with it and feel better.

        I HATE PAIN TOO!!

        Kari
        Kari

        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

        Comment


        • #5
          Roxie I am so sorry you are suffering. You think after you deal with pain so long that you get use to it. BUT YOU DON'T. I think the body get so worn out because of the pain that it gets harder to fight it.

          I hope the new alternatives that you try will get you that relief that you need so desperately. Please let us know.

          Take care, Trishann

          Comment


          • #6
            HI All.........thank you for your wishes today. I truely am just totally worn out from this pain.....and then...even with the Lyrica and Elavil I can't sleep. GEEZ! My Rheumatologist won't be back in town till a week from Monday......but I have an appt then and hope he can give me some other pain meds to try. (of course I just bought a 3 mo. supply of Lyrica from the mail-in pharmacy!)
            I've never had pain like this before......it's from the never damage....and my hands, arms, shoulders, legs, hips.....all hurt.....ache really. I just hate it!
            Hope you all have a pain free weekend....Rox

            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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