Calieve, I read your earler post today with interest because I had got up to post mine, to ask if what I am going through is normal. For the past two days, and nights, I have been feeling dreadful in that every time I try to sleep, I get 'jingly jangly' nerve sensations running up and own my body, I am not tired, I am not sleeping restfully but fitfully, my body is tired, limbs are heavy, joints ae clicking. I feel very inflamed inside - all of me. I just don't feel 'like 'myself' anymore. I am worried for my mental health - is this normal? How can this be die-off? Where were all the bacteria etc. a few months ago when I was in my lovely remission? Hiding? I am currently on maternity leave but if I were not, I am not sur that I could concentrate or focus enough to do my job. THis is scary! If anyone can shed some light on my sensations, I will be very grateful.
HI Vin
Yes this whole thing is so very scary, the symptoms have no rhyme or reason. I feel sick all over my body but for me I look back and can see that my body was breaking down gradually over several years before IC hit after 2 UTIs on top of each other. The problem was it was so insidious that although I knew I was tired most of the time, that I was going to the loo more times than anyone else I worked with and that I had urgency even though I voided small amounts, I just got on with it. There was no pain and I was still living my life....oh how I wish I had realised I was heading for a crash, if I knew about IC boy would I have been doing everything I could to bring myself back from the precipice! I think that there is alot of hidden inbalance and toxins and they start mainifesting by the time the boy says 'enough'.
Email Matia and ask her if she thinks it is die off she may feel that you need to change your herbs, she has just significantly changed mine as I have been really quite unwell since the weekend and as a result my anxiety is up again.
I know exactly what you mean about not feeling yourself, I haven't since this started for me 19 months ago. I have windows when the bladder symptoms etc are at a lower level and my energy is up when I glimpsse myself again and I feel like I can reach my hand out and touch my former life.
SO many times you will see the advice to BREATHE, that is what I do when the fear really kicks in, takes time but it does help. There are so many that make it through this treatment some taking alot longer than others, we are with a tenatious care professional, Dr B is confident that this will work and we will break through, I suppose it is just that the body will do it when it is ready and not before, which will always not be quick enough for us!!!
Please take heart and know that you are not alone with this fear, so so many of us feel it, that doesn't take it away but I think we can take solace in thinking that we are not weak willed and that anyone however strong if faced with this would feel the fear.
I am thinking of you, sending you a hug and wishes for peace.
You have been in remmission before and that makes me think that you will reach that again
I honestly think that it is die off, I think that the root of the problem is not our bladder. I think that die-off happens everywhere in the body, because there is alot going on inside that needs to heal and get better. In Dr. B's dissertation it says that a lot of people think they are getting worse, and they lose hope but actually they are getting better. We just all need to get through it, if you are in too much discomfort though then you need to email her. She may be able to fix your protocol to make you more comfortable.
Sometimes, when I start to get discouraged, I just think what would my life be like if I didn't find Dr.B. For me, I know it wouldn't be good, because I was getting worse and worse in every way physically before I found her. Reading the dissertation really helped me when I was feeling icky. Maybe it might help you.
Vin, you said your second round trouble came after giving birth. Mine came after delivery, too. Something happened during or after pregnancy I think.
My former urologist said that a lot of IC cases originate after a major medical procedure, i.e., delivery or hysterectomy. Of course, he doesn't know why, but that is his facts.
I have read of several who have developed IC after childbirth so that probably was the trigger point for you.
Vin you sound like me re busy, busy life. My husband left me 11 years ago and have since then been a single parent, workeing full time and caring for my daughter, run the house, pushed myself to do a post grad qualification that took 4 years to complete and at the same time tried to have some kind of a life...had a nervous breakdown in summer 2009 which I was told was basically a result of pushing myself for years. Strange thing is literally the week before the IC erupted into my life was the happiest for a really long time and I felt great....I thought life was finally turning around and things were going to get easier and better.....could not have been further from the truth!! I'm sure you felt the same way with the birth of your child. I know you said you are on mat leave at the moment, as awful as this is and as scared as you are I really hope that you can have some precious moments with your baby, the baby days are over so quickly arn't they.
We're both in the UK, if you would like to speak on the phone let me know, you've got my email.
Hope the breathing is helping.
Thinking of you.
L xx
I had a lot of joint and muscle pain in the beginning, even before I started treatment. I heard about muscle pain from few other patients. I cannot wrap my head around it, why we have muscle pain. What does it have to do with the bladder?... of course we all know that IC often comes with other conditions. I am lost…
Vin, what kind of pain other then bladder and urethral do you have?
Do you feel generally fatigued along with everything else that's going on?
that all of this has been with me since before I started with DR. B.. Doesn't sound like die-off, does it? Can anyone relate?? In my previous bout with this disease, I felt normal but only had issues with the bladder. Now, it's all of the above - is the reality that the disease has progressed or is this really die-off? I haven't felt 'normal' since it came back. I am really frightened.