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can you still have surges in pain when a regimen is working/the right thing for your body? i feel like there is never a rhyme or reason to my flares, like no matter what herb combos i try/foods i eat, etc., my body just does what it wants to do. it really makes me feel insane. case in point... yesterday things were feeling a bit calmer for most of the day so i allowed myself to think, "maybe this herb is actually helping" (right now we are not doing any cleansing, matia is just trying to find "a way in" to the pain with something that is supposed to be soothing/tonifying - i think that's what this herb does anyway). i still had irritation (of course), but, things seemed calmer overall. so, of course my mood felt lighter and i allowed hope in. then for NO REASON at about 10:30 p.m. i just started flaring. it's like someone flipped a switch on my nerve endings. no diet cheating. no new chemicals or detergents. nothing. just out of the blue flare. same thing happened today. feeling ok - not great, but not the worst. then all of a sudden at about 11:30 a.m., i get a major surge in burning. it eventually seems to subside, but not entirely. i emailed matia and told her about the surges i've had the last few days and she still wants me to keep going on this dose for another two days. so i am of course going to do that, but emotionally i am all over the board. what do these fluctuations mean? do you guys go through mini flares like this on a given day and if so, do you still stay on the regimen you are on? if you do, do the flares eventually stop?
flares
My flares are connected to so many other things other than food and herbs. Yesterday I had a good day, then all the sudden at 6pm-9pm I started flaring like crazy, with no change or cheating in diet and herbs. I think it was because I was writing in my book and that brings up emotions from my past, but I am not really sure. I know my flares can be due to hormone shifts, food, emotions, time of day, bowel habits, or herb changes. Also, if I am really tired I start to flare more than when I feel rested. Its so confusing, wondering if you are truly being helped by something or not, and not being able to tell. It makes me question what I am doing, and then that puts me in a even more anxious state.
random increases
I share your frustration and the same thing happens to me often, out of nowhere just like you said it's like someone flips a switch, great analogy. They do always calm down... until the next one that is. Yes, I stick w/ the regimens despite it, but in the beginning of treatment (or in your case still being in much pain & dealing w/ going off meds) it's near impossible trying to connect the dots ... I would drive myself crazy trying to figure it out, then would have to keep reminding myself it's not my job to figure it out (as if I'd know what to do anyway!). I'm under Matia's expert care, it's her job (easier said than done for a control freak though!).
But truly from what Matia's said in the past it's seems to be a "normal" part of treatment until you get the pain more under control. I know it's so hard though, emotionally you ping-pong between hope and disappointment and confusion because of it.
Fluctuations
My pain level is up and down during the course of a day. I can't always pinpoint the reason. It just seems to do its thing no matter what I do.
fluctuations
It is amazing how much synchronicity I share with ICAMA sometimes- I have been wanting to actually post about this-as this happens to me and has always happened to me. But It doesn't happen with the frequency that it used to- meaning that my spaces between flares in VV and bladder are more apart. But this still happens for me and I think these surges have to do with the dynamic changes my body is undergoing in treatment. What are those changes? I could not tell you at all. As long I am communicating to Matia I feel like - well ok I can't control them but at least she is aware of them and if a change is needed then okay. I will be feeling overall calmer maybe for like 5 -10! days at a time in pelvic tissue/ vulvar/bladder and then yes out of the blue- nothing changed get hit with a surge and flare. I tell Matia and sometimes she changes things and sometimes she doesn't. While I realize this is normal - it makes me feel SOOOOOOOOOOOOOOOOOOOOOOOO CRAZY! I cannot describe the disappointment that crushes my being! Yes- I have felt mini flares come and go throughout a single day but not in a while. Yes I have stayed on the same formula and they calmed down. Sometimes it was a result of the formula needing a tweak. It really depends on soooo many factors I think -If I had a positive response with the formula at first and then a stormy one then sometimes she just had me push through the storm and it calmed down.other times a formula started out well and then got more and more intense until it was flare city and then it calmed back down again. well see if I can hold to this as I am in a relatively calm place painwise at the moment although my digestion is totally FUBAR -- But I have decided to stop placing soooo much emotional investment in the calm times. I need to stop thinking "okay that was the last one" because it probably won't be just yet. I need to just live in the moment best I can and ride out whatever happens. I may not be able to control what is going on in my system- but freaking out does nothing but waste my energy especially when the fluctuations are proof that "something" is happening. Maybe VV/IC is some HUGE cosmic exercise in practicing letting go? so yes I used to get calm places in my pain throughout my day and then get slapped with a flare with the stringentest of diet and proticol adherence. What you are talking about is totally relatable and yes gets better. For me it got better first with those spaces between flares getting bigger. although I have times where the flares run back to back? sorry if that sounds contradictory but I swear we are some of the most thoroughly in touch with out bodies patients ever because this condition is so darn subtle and elusive. It's like trying to thread a needle with a swiggly moving piece of thread. but even though that seems impossible eventually you wrestle that sucker down and get it through. love to all - honeybee
Further reflection
After reflecting more on this, I realized we're calling it random fluctuations b/c from our limited physical perspective it seems random. But I must remind myself that I can't see what's going on inside my body, and if we could see that -- or since we can't, if we at least imagine it -- we'd see all sorts of things... inflammation of tissues, hormone changes, chemical interactions, etc. etc. not to mention seeing our body being slammed by all these bacteria/yeast and simultaneously working so damn hard to heal. Not only can we not see any of these things but we're also not really in touch w/ our bodies as the dynamic amazing organisms they are -- I mean like when you look at a human liver or a cross-cut picture of a human it's hard to relate that all that is actually inside me, or actually is me. It's weird. At least to me.
So I think there usually ARE reasons why we feel better/worse throughout the hour/day/week, we just forget b/c we can't see any of it and aren't in touch with it. Reminding myself of this is helping, b/c I remember studying the research of Martin Seligman about learned helplessness and how when we feel things are happening without reason or without our control we lose spirit, and we can't afford to lose that.
Lisa
that is a great reminder. It helps to remember we are healing, our bodies are working and that we can't see it inside.