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What is your definition of pain free?

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  • #16
    Pain free is a dream I wish I had just a few day a month. Godd days are when my pain with meds is under a 4. That means after I take a ms contin I can get my pain down to a 4. Thoes are the days I can clean the house and do fun things with my kids. I have had non stopp pain for 2 years now. before that I was able to deal with the pain better. I have had IC for 10 years now
    Amber
    Amber Sevy

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    • #17
      Pain free to me means no pain. I am not in any pain right now as I type this. I have lots of days that I'm not in pain, but I do always manage to get a momentary "twinge" sensation in my bladder. Like, its trying to remind me not to forget about it, LOL.

      Pain free to me means no pain meds needed!!

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      • #18
        When I saw the words PAIN FREE it was like Christmas and I get to open up the gift.

        Pain free to me is being able to go outside, being able to swim, be able to do even the smallest things. Even though it is not pain free I am grateful I still can get up and do things at times.

        Take care, Trishann

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        • #19
          Pain free from newbie

          I find this posting very helpful, having just been diagnosed.

          I guess for me, it's when I'm not aware of the pain . . . either it's not severe enough to be the main thing on my mind or I actually don't have any (in the past 6 months, that's been about 1 day or a few half days per month).

          And then there are the times when, especially difficult living alone, when I have to do everything and anything to stop or lessen the pain, no matter what else is going on in my life.
          Waves
          Diagnosed 6/4/07, also IBS, migraines, allergies,
          hysterectomy, previous fibroids, cysts.

          Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!

          Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day


          I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.

          Comment


          • #20
            In the last 40 years I have had pain everyday. It is a part of my life. I’m not saying I embrace it, I just know it will always be there. I can’t consider pain-free to mean “to be without any pain”. Pain is like an ocean wave. If I run into it I will get slapped down and run over or I can learn to swim into it and let it float me to the shore. The minute Looking for the “pain free” experience only makes me feel my pain.

            When night comes the wave overtakes me. Most nights I cannot sleep without Rx for sleep and sometimes I need Demerol. I have no idea of the pain you must be feeling and I certainly would not discount your feelings. Evaluating pain is so subjective. I am just so thankful that I know there will be an end to the terrible pain I experience on a daily basis.

            On a scale of 1-10. I am no less than a 6 everyday (that would probably be something like having a cut that needs stitches or strep-throat).

            Pain from IC? I honestly don’t know. I think it is like “Oh I smashed my finger, I think I’ll bang my head on the wall. Now my finger doesn’t hurt. Anymore..” I think IC is the finger and the wall is my knee. Unlike those of you that have debilitating pain with IC, there will be an end to my pain. I will have 2-3 surgeries in the next 4 years. I will severely disabled physically. I will be on heavy duty pain med for a year or so and then I will have total knee replacement. Why do I wait? Total knee will never be as good as your natural knee. Is the pain worth it? Right now, yes but one day it won't be. I’ll have TKA and my pain will be gone.

            I can't give into the wave. I’ll turn into it and ride it to shore. For now this is the only way I can survive and be “pain free”.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

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            • #21
              I read so much about the pain associated with IC but I dont seem to have terrible pain but just the most disgusting feeling of infection in the bladder/genital area (without an infection being present) which my doctor tells me is a form of pain. I had a hydro 6 weeks ago and was told again I definitly had IC but was wondering if this is a normal symptom. Does anyone feel this way?

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              • #22
                Samathajane,
                Yes this is very normal symtom of IC, most people report that they have the feeling of having a UTI but do not have an infection. We usually consider that as a flare..I would suggest lots of water<I know more peeing but it helps in the long run. Peridium or Uristat for spasms and burning and a heating pad will help with pain.. Also warm baths help me..You will get past this..Sending you warm healing thoughts..

                Ronda
                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


                • #23
                  Pain free to me means that I can function. Usually around 2-3; don't have to take any pain medications at all. (usually don't unless it gets to 5-6) - just depends; sometimes the pain comes and go so I will wait and see alot of times.

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                  • #24
                    For me it's a matter of which pain i focus on. If my sciatica is bad i don't really notice twinges in the bladder. On the other hand, if nothing else is hurting then i will be aware of bladder pain. It's all relative. Fortunately i've only had severe bladder pain on a few occasions - and by "severe" i mean pain that made me cry. But even then it wasn't as bad as childbirth (which in turn wasn't as bad as impacted gallstones). I thank God that the pain isn't any worse because i'm allergic to most analgesic drugs - can't take anything stronger than the paracetamol/acetaminophen and codeine combination.

                    I feel very sorry for those of you who suffer severe pain with IC, and pray that you all go into remission soon and stay there!
                    I'm sick of being sick. Fed up with all this autoimmunity/allergies stuff: migraines, eustachian tube dysfunction, asthma, peripheral neuropathy with polyneuritis, Raynaud's disease, acne rosacea, Hashimoto's thyroiditis, IBS (diarrhea type), IC, one deformed kidney, Von Willebrand Disease (a bleeding disorder), drug allergies, food intolerances, life intolerance! And besides all that, i'm missing my tonsils, my gallbladder, my uterus and ovaries... and probably a gazillion brain cells

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                    • #25
                      Pain free to me is no pain. Usually if I have a good day I describe it as pressure instead of pain. I still know my bladder is not normal but I can not call it pain.

                      Ginny

                      Comment


                      • #26
                        I haven't been pain-free for a moment in the past two years. I ALWAYS have some discomfort in my bladder. But often I'd rate my pain at a level 2...if I stop and focus on it, I feel the discomfort, but otherwise, it's very easy to ignore. This is what I now consider to be "in remission." I've sort of given up the idea of ever being pain-free the way I used to be. A manageable level of pain is what I hope for.
                        I have: Interstitial Cystitis,Eustacian Tube Dysfunction, IBS, Sciatica.

                        I take: Elavil 50 mgs, Balziva birth control, and Elmiron instillations.

                        I am: Not my disease.

                        My Myspace Page: http://profile.myspace.com/index.cfm...iendid=4249067

                        Comment


                        • #27
                          Thanks again to all your replys.. I find it very interesting how we all cope with our pain..And consider what pain free means to us..
                          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

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