Guys,
So I have been doing very well since my Stanford trip in early September. Minimal pain and limited frequency. Today I rarely have urgency just some "irritation" where it feels like a "pee-reminder" frome time to time. I just had a full week of no symptoms at all, but today I feel some of this irritation again. I am so tired of wax and wane. Will it ever stop? Today I am on Atarax, does Wises tapes/sessions 3-4 times a week and daily stretches. I must say that I am sooo much better today (knock on wood) compared to how I felt in april/may earlier this year. I drink coffee, tea, alchol and eat whatever I want. I am just afraid that I will never be 100% and also VERY afraid that this will return full blown.
Dont know what kind of answers I expect, just thaugt I should post an upadate.
Btw, Thank you to all the nice people on this site it has helped me a lot so far.
/Paso
Wax and wane
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Paso
- Old Hand
- Posts: 325
- Joined: Fri May 23, 2003 11:34 am
- Location: Sweden
Wax and wane
Age:34 | Onset Age:29 | Symptoms: Suprapubic burning on and off, frequency on and off, Dribbling, | Helped By: PT for sure has helped me, stretching, Baking Soda, drinking lots of water, Omega 3 | Worsened By: Concentrated urine, Coffee, Stress...
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Beanz
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TK
Paso,
Re Wax, Wane and "how long does it take till I'm finally done with all of this?":
Extrapolating from my own experience and reading posts from other longtime sufferers, it seems that -- once you get over that first range of high mountains, once you get beyond initial therapy and the improvements associated with this --
Further improvements seem to come in increments of 3-4 months. No way to validate this scientifically, but it makes sense to me that these longer intervals correspond with how long it takes to reverse the neurological component (peripheral neuropathy and/or central sensitization) in increments that you can consciously recognize. Improvement continues day by day in very tiny steps, but you don't perceive it until x months later when you realize, "hey, I'm clearly better now than I was 3 months ago".
In my own case, I suspect that the last 1% or 3% or whatever... will slowly diminish as long as I continue to to do my excercises regularly and avoid the behaviors that reinforce the neuropathy. Whether 100% "cure" is possible for me, or for anyone is an academic matter.
For now, I have my life back. The condition is no longer the central consideration in my daily decisions about how to conduct my life. But I still have to remain vigilant and, if I want to improve the present situation, I have to work at it... which I often don't feel liike doing.
I think many of us reach a point where we are feeling much better. We almost can't believe it that we managed to find our way out of dispair. After months or years of closely guarded behavior, we just want to reclaim our lives. But sit too long in front of that computer, or engage in xyz behavior and "the condition" reminds us, "hey I'm still here and what's more, if you're not careful, I might come back".
Of course, once we know how to take care of our pelvic floor muscles, we can probably read the warning signs well enough to prevent a radical turn for the worse.
But the problem is that once we get "mostly better", there's an inclination to do just enough to maintain the present status, as opposed to digging in working hard to reach that next level of distinct improvement.
In my own case, I allow myself to drift sideways for a couple of months, before realizing that I have to get back to stronger discipline in order to progress.
Yes, Paso, it's frustrating. But look how far you've come! You've got the understanding and the discipline to go further still -- when you choose to do that.
Re Wax, Wane and "how long does it take till I'm finally done with all of this?":
Extrapolating from my own experience and reading posts from other longtime sufferers, it seems that -- once you get over that first range of high mountains, once you get beyond initial therapy and the improvements associated with this --
Further improvements seem to come in increments of 3-4 months. No way to validate this scientifically, but it makes sense to me that these longer intervals correspond with how long it takes to reverse the neurological component (peripheral neuropathy and/or central sensitization) in increments that you can consciously recognize. Improvement continues day by day in very tiny steps, but you don't perceive it until x months later when you realize, "hey, I'm clearly better now than I was 3 months ago".
In my own case, I suspect that the last 1% or 3% or whatever... will slowly diminish as long as I continue to to do my excercises regularly and avoid the behaviors that reinforce the neuropathy. Whether 100% "cure" is possible for me, or for anyone is an academic matter.
For now, I have my life back. The condition is no longer the central consideration in my daily decisions about how to conduct my life. But I still have to remain vigilant and, if I want to improve the present situation, I have to work at it... which I often don't feel liike doing.
I think many of us reach a point where we are feeling much better. We almost can't believe it that we managed to find our way out of dispair. After months or years of closely guarded behavior, we just want to reclaim our lives. But sit too long in front of that computer, or engage in xyz behavior and "the condition" reminds us, "hey I'm still here and what's more, if you're not careful, I might come back".
Of course, once we know how to take care of our pelvic floor muscles, we can probably read the warning signs well enough to prevent a radical turn for the worse.
But the problem is that once we get "mostly better", there's an inclination to do just enough to maintain the present status, as opposed to digging in working hard to reach that next level of distinct improvement.
In my own case, I allow myself to drift sideways for a couple of months, before realizing that I have to get back to stronger discipline in order to progress.
Yes, Paso, it's frustrating. But look how far you've come! You've got the understanding and the discipline to go further still -- when you choose to do that.
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Paso
- Old Hand
- Posts: 325
- Joined: Fri May 23, 2003 11:34 am
- Location: Sweden
Tk,
I can only say thanks. You aced it. This is EXACTLY how I feel. And yes you are 100% right. Gave me energy again, thanks :)
Take care
/Paso
I can only say thanks. You aced it. This is EXACTLY how I feel. And yes you are 100% right. Gave me energy again, thanks :)
Take care
/Paso
Age:34 | Onset Age:29 | Symptoms: Suprapubic burning on and off, frequency on and off, Dribbling, | Helped By: PT for sure has helped me, stretching, Baking Soda, drinking lots of water, Omega 3 | Worsened By: Concentrated urine, Coffee, Stress...
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tractor316
Great advice TK . I have had over a week of being pain free . I can see the end is close . It may not totaly fade away forever but I can deal with it . Your best advice is be vigilant . I like that . I think a person should not dwell on their condition but be aware of wht makes it worse . Thanks for your post .