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  • What is your definition of pain free?

    I am not trying to ask a stupid question here, but I know most of us suffer daily with pain, and alot of times it is severe. So I was wondering what would pain free be to you? I know when I am asked that question if I am at a level 2 which is a slight ache to me that is nothing, so I consider that to be pain free..What is your input on this..Thanks Ronda
    Last edited by leelee88; 06-14-2007, 09:35 AM.
    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.

  • #2
    Not a stupid question. I have had MANY completely symptom free days, those days I would call pain free. What 's harder for me to describe is severe pain. I had such off the charts pain after my hydro when I was retaining and had paralyzed bowels. That was beyond a 10, on a 1-10 scale, and beyond a 5 on a 1-5 scale. So when I'm really hurting now, what some people might describe as intense or severe pain, to me yes it does hurt bad, but compared to after the hydro, in my mind it's like 2 or 3, even though it probably should be rated higher than that and I have to tell my doctors 4-6, otherwise they don't take me seriously. I know you had problems after your hydro, too. Do you have trouble rating your more severe pain now after that experience? I think Amy put it once as reserving a 10 for having your leg amupated on the battlefield without anesthesia, and that I should think of the hydro experience as a 9. That put it into perspective for me, a little.

    Comment


    • #3
      Yes Briza,
      I have problems rating my pain thats why I am asking..Like you with the hydro/ rupture. it was worse than child birth for me or any other pain.. My appendix have almost ruptured before and the pain was not that bad...So I have a very high high tolerance for pain..So when I am at a 4 its nothing..Thats a good day for me..My GYN thought I was joking when I told her this..
      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
        I think this is a great thread. Will be interesting to see how people respond, whether it be on what they consider pain free or how they rate more severe pain based on their "worst pain you've ever felt" experience. I have not had children, but when my friend visited me in the hospital, and she has had two difficult deliveries....she said from the way I was screaming that my pain had to be worse than hers, and I was on a morphine pump, and like I was in labor for 9 days straight.

        Comment


        • #5
          Pain free, what is that? I can't remember when I have been "pain free", I have got my IC under control and only suffer a few days a month with that, usually during my period.:woohoo: I watch everything I eat, which has helped alot with the pain.

          I have been having some other pain in other areas, my Dr found something in my vagina and did a biopsy and that is causing me alot of pressure which now has been giving me alot of pain. My gyne kind of shrugs it off, she wanted me to go for a colonoscopy which I did yesterday and that Dr said everything was fine, I did have 1 polyp which he removed but he said not to worry. I have called my Gyne back and asked her to refer me to someone who could help me with the thing they found in my vagina, she originally told me she could not do anything for me. I have given myself until Sept 1 and I want to be pain free, I know I will still have IC pain days, but I have already accepted I have IC and it is something I have to live with. This other pain is way worse than IC pain.
          I would rate it an 7, everyday I deal with this pain.

          Sue
          Dx with IC April 30 2007
          Dx with Endo Sept 2007
          Supra Cervical Hysterectomy April 9 2009

          Comment


          • #6
            Instead of just giving a number 1-10, I always try to qualify the 1 and 10:
            If 1 is a sore muscle and 10 is an abscessed tooth I am at___

            I consider "pain free" when I don't notice it or am not aware of pain, but if I stop and "rest" I am uncomfortable. Basically I am a "Keep Busy" gal.

            Are any of you doing the "Proclaim" questionnaire that Jill posted a few months ago? It is very enlightening. Just in answering the questions each month I am beginnig to understand how I respond to different situations. And what responses cause problems and which solve problems. Now if I could just get the actions and the responses to go together I would be sitting pretty.
            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

            Comment


            • #7
              Let me see, my 9th grade year before the endo started. WOW that has been forever I can't even remember how to decribe it.

              Comment


              • #8
                I think I'm like you, I think pain free is a really low level pain. On a really good day I may not have much pain but I will at least have some twinges here and there which are a 2 or 3. I don't know if I can remember the last time that I went through a whole day with NO pain, just less pain.
                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


                • #9
                  My last pelvic pain free year was 1985 before my freshman year of high school--before my first cyst and endo started. Tolerable and functional is pain free to me. Sounds blunt I know, but I know no other way of living, and I have chosen to reclaim my life from the pain.

                  Hugs,
                  Barb
                  (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                  [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                  :angel: IC Angel Volunteer Coordinator :angel:
                  :) Contact me via PM or e-mail if you would like to help
                  I have learned all about life in 3 words: It goes on! :D--Robert Frost
                  PCOS 7/85
                  RSD 7/94 :headbang:
                  Endometriosis 9/98 :toilet:
                  Antiphospholipid antibody syndrome 9/99
                  Kidney stones--too many to count
                  Factor V Leiden mutation 10/02
                  IC 6/03 :evilsmile
                  Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                  "Spirit is an invisible force made visible in all of life"--Maya Angelou
                  "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                  Comment


                  • #10
                    pain free days would be nice even if it was 1 time a week. I think with the fibro, arthritis, and sacralititis with the ic pain is now my life.
                    'The will of God will never take you where the Grace of God will not protect you.'

                    Comment


                    • #11
                      I wish for a pain free day but just like everyone else it has been a long time. My average day is about 4-5. A good day is 1-2. lately I am at about a 6-7. There have been a few rare days (3 this year) that i have had absolutley no pain. I think keeping busy is the way to go although there are those times that I wish I could just stay in bed.
                      mom to 3 wonderful kids


                      IC symptoms 7/03,
                      hysterectomy 11/04,
                      prolapse cervix 7/07
                      diagnosed: IC 2007
                      IBS 2008

                      Comment


                      • #12
                        Very interesting thread. I still think of pain free as being a 0 on the 0-10 scale (where 0 is no pain and 10 is the worst pain I have ever been in). I was a 0 before I was suddenly stricken with IC in late Dec 06. I can still remember what pain free feels like and it is my goal to feel like that again some day. I am now a pretty consistent 2 or 3. And sometimes when I am really busy/distracted I can be at 1 for a short period of time. For me, 2 is uncomfortable but I am able to function normally. I can exercise, work, etc. But I still long to be a 0. Here's hoping that we all find 0 again someday...Linda
                        Sudden onset of UTI like symtoms on Dec 27, 2006.
                        Diagnosed with IC on March 12, 2007.
                        Current Meds: 50mg Elavil
                        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

                        Comment


                        • #13
                          Thanks everyone, I wish I could show your comments to the new URO im going to see, just to show her that I am not alone and so many of us suffer on a daily basis with IC, but hoping she is good enough to know enough about IC to realize this..Thanks again.. You all are GREAT!!(((hugs))) 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


                          • #14
                            On one of my last visits to my pain Dr she asked "what I wanted her to do for me". I responded "I want to be pain free". She said "that's unrealistic". Is it really?? I don't want to live at a pain level of what I call 2-3 with pain meds----which to anyone else would be a 3-4. When those pain meds don't work I'm at a 5-6. But like quite a few others I have had pain most my life. (due to kidney problems/endo and ando)

                            Comment


                            • #15
                              pain

                              I think pain free means no pain at all. As in, you forget you have a bladder altogether.

                              I was lucky enough to have four days this weekin a row of no pain. That is seriously the first time in eleven years that I can say that. It has to be the Topamax.

                              Then I had sex this morning and now I'm burning a little. And my frequency is up.

                              But maybe it was b/c I ate 3 peanut m&m's yesterday.

                              So no more of either for me!!! LOL.

                              I'm still elated that I had four days of no pain. I had really lost hope that it would ever happen for me. I'm so thankful to have hope again.
                              Lee Ann
                              Current Rx Meds:
                              Atarax, Ditropan, Elmiron
                              Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                              Hooray for babies!
                              Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                              Didn't work for me:
                              Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                              IC (Mod-Severe) since 1996

                              UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                              My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

                              Comment

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