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  • I have a question about pain

    Hey there,
    I was just wondering how many people have major pain all the time. I am in the midst of major pain I have been in excrusiating pain since September. I have been out of work several times because of this. I am taking vicoden and percocet for pain have tried morphine for the pain and I am still in pain, I have had the interstim implant, and a hydrodistention and no relief. Is there anyone else ou there in this amount of pain? Or is this something else? I am in so much pain right now that I am contemplating a trip to the ER for stronger pain meds. I am just feeling very overwhelmed with all this pain and very alone. I feel like I am the only person in this much pain.
    Any advice would be geatly appreciated.
    Thank you
    Started Vaginal Valium Suppositories April 2014
    Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
    Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
    Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
    Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
    Interstim repair December 2008,Removal of the Interstim August 2011,
    6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
    Diagnosed with Raynaud's Syndrome November 2013
    Ambien 5mg for sleep.
    Elivil 50 mg at bed
    Lisinopril 20mg in AM
    Effexor 225 mg
    Oxycodone 10 mgs 2 x a day for pain
    Baclofen 20mg 3x a day
    Phenazopyridine 200 mg as needed
    Omeprazole 20 mg at night
    Lyrica 450 mg daily
    Requip .50 mg at night
    Ketorolac 10 mg as needed for migraines

  • #2
    I'm so sorry. I'm about there also. I get no relief with anything anymore. It's very discouraging. The only thing that gets me through is knowing I'm not alone.
    I wouldn't make it without all of you.

    Hugs,
    Moonheart
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #3
      pain

      i have had also a lot of pain. so don't feel alone. but today down there i was feeling that my bladder was going to fall out, it hurt so bad and i could hardly stand up. It feels like muscles pulling in there. I have been in a big flare the longest i have ever had. My lower back hurts and my lower staomach.
      and heaviness to go pee all the time. I can't sleep because of pain or peeing, and to add to all of this real bad leg cramps. and i can see and feel the pulse in it to. please help me, Doctor didn't help me either. Don't know if anyone understands the pain i am telling here, and it is hard to explain it also.
      shirley2

      thank you

      Comment


      • #4
        Was just wondering if you have some pain that is coming from your sensory nerves (my Dr. calls them afferent nerves) Lots of those in the bladder area. I take a low dose of neurontin that helps me. It especially helps me sleep. I have that nerve pain in my hands and feet and the old bladder area. It's something that started a long time ago for me, since I was a baby and hard to go back and get a fast nerve repair now. But these little peripheral nerves can recover when damage has not been a lifetime, like mine.

        I have some members of my family that have diabetes and they also have that type of peripheral nerve pain. I think its worse in feet and a little with their bladders, and their diabetes caused it.

        There are many other conditions that can cause nerve pains...maybe your Doctor can help...but learn first, so you can talk with the Doc.

        Best wishes

        Comment


        • #5
          Pain

          I have had severe daily 24/7 bladder pain since January 26, 2000 with not one minute, one hour, one day of relief.

          It is very disheartening because the DX of IC leads those in the medical industry to believe there are only flares. Sadly there are WAY MORE of us with 24/7 bladder pain than the medical professionals acknowledge.

          Yet there are patients who only have urgency/frequency with NO pain that are DX'd with IC when in fact they may have "overactive bladder" only.

          Anyway..just wanted you to know you are NOT alone. I have been "to the edge of darkness" and back several times in this over SEVEN YEARS of constant daily 24/7 pain.

          Please seek help from pain management center.

          Comment


          • #6
            There are many different medications and treatment options to try. It can take time to find which work best for any individual. Even though I have what my uro called severe IC with ulcers, I find that with diet and treatment I do pretty well.

            Are you following an IC diet?

            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


            • #7
              You are not alone; there are a lot of us here who have severe pain, all or most of the time. It can be caused by plain old bladder irritation; by nerve syndromes; by muscle spams; or it can be "idiopathic" which means, we don't know what's causing it.

              In my case, although opioid pain relievers are an important part of my treatment, they are not the only weapon in my anti-pain arsenal. Pain that seems to come from inside the bladder, the irritated kind of pain, responds extremely well to rescue instills of heparin-lidocaine-sodium bicarb. Spasms respond to heat, muscle relaxants, massage, and depending on their location, to lidocain transdermal patches. They don't go deep enough to help inside the bladder, but if the pain is in your back or sides, they can knock it out completely. Nerve pain (hardest to identify) seems to respond to neurontin or other drugs in its class. They are anti-seizure meds, and they basically help calm the nervous system down. They have to be taken all the time; they are not a "rescue" drug. A lot of people have success with elavil.

              Other ways to help yourself include: heat or cold packs (whichever sounds more appealing); hot baths; rest and relaxation techniques; and
              being sure that your doctor is actually listening to you. Unfortunately, this is often the hardest to come by.

              I hope you find a successful treatment plan and that you start to feel better soon.
              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


              • #8
                Originally posted by Silverfox View Post
                Was just wondering if you have some pain that is coming from your sensory nerves (my Dr. calls them afferent nerves) Lots of those in the bladder area. I take a low dose of neurontin that helps me. It especially helps me sleep. I have that nerve pain in my hands and feet and the old bladder area. It's something that started a long time ago for me, since I was a baby and hard to go back and get a fast nerve repair now. But these little peripheral nerves can recover when damage has not been a lifetime, like mine.

                I have some members of my family that have diabetes and they also have that type of peripheral nerve pain. I think its worse in feet and a little with their bladders, and their diabetes caused it.

                There are many other conditions that can cause nerve pains...maybe your Doctor can help...but learn first, so you can talk with the Doc.

                Best wishes
                Hi Silverfox...yes, I have that same exact type of nerve pain, and it started four months ago after my cysto/hydro/biopsy. I never had it until then. It starts in my bladder, goes down my left inner thigh and tingles my left foot. I really hope this goes away soon. I am on 100 mg of Neurontin, but that is for migraine prevention. Perhaps I should get it increased to see if it helps my bladder...thank you.

                Comment


                • #9
                  I also have the major 24/7 pain. I have tried several different treatment options and still no relief. I do have some medicine that will help with some of the pain but it NEVER goes away. I would love to have one day without pain.
                  Miss Bessie

                  Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                  Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                  Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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