What is your definition of pain free?

[leelee88]

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:angel:

[Briza]

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.

[leelee88]

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..

[Briza]

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.

[zanne]

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

[L. Thomas]

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.

[dancemomof2]

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.

[GriffsMommy]

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.

[Babs RN]

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:smile tee

[tigger_gal]

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.

[charmedx3]

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.

[lan]

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 :pray: 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

[leelee88]

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

[**Angie**]

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)

[LeeAnn]

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.

[amber sevy]

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

[soccermom32]

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!!

[Trishann]

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

[Waves]

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.

[L. Thomas]

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”.

[samanthajane]

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?

[leelee88]

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

[mary124]

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.

[jiriji]

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! :smile tee

[Ginny]

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

[megancolleen]

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.

[leelee88]

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..:angel: