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Hello ladies
I had a great virtually symptom free week last week...or rather symptoms I could manage. A couple of days ago I ended up with really bad burning and urgency which is really awful...in fact I can't remember the last time I fidgeted so much and was so uncomfy. Everything seems to be adding to that at the moment...even drinking water. I was thinking of downing some bicarb/make a tea from coriander seeds as that helps burning. Isn't it odd how you can feel so darn peachy then end up feeling so rough. Any other tips for helping through this nasty burning phase would be great...I am up to mu usual tricks of knocking myself out with sleeping pills of a night. Fedup with eating as well...which is odd as I went through a phase of being ravenous and wanting starchy stuff but now I barely want anything. Grumble!!
Ria
Sorry to hear you are going through a rough patch- it is temporary I assure you but -I was under the impression that sodium bicarb was bad for us- it creates too much of an alkaline environment? I forget why this is bad but I recall her saying to not use this. So even if it provides some releif in the short term it could be making it harder for you to get well in the long term. Do people use this for temporary relief? I see people mentioning it from time to time that they use it help them through rough times-but for all of you who do I would check with Matia if there is something else you can do or maybe she can adjust your formula unless its just a time of pushing through? I ahve to say that the first year for me seems to have been about crawling out of massive inflammation and then I moved into a time period the last 9 months or so where I bounced back and forth between extremes of good days and bad days. It has been VERY hard for me- harder than following the diet harder than the pain- this is apparently normal process but it messed with my mind so much. I would feel great for a week and then bad for two and then good for two days and bad for one and then great for 4 days and crap for a month. It's draining and dissapointing and hard because your tolerence level can kind of drop- BUT the upside is you are getting better and those fluctuations will even out. It's happening that mine are getting less contrasting and I seem to be fluctuating less than I was a few months ago. It is really strange but the only thing I can think of is our bodies are just going through rapid changes and we have to adapt and be flexible and trust in our bodies to recover and regain balence. You have to be in the moment! May you feel better soon! - Mary
bicarb makes the yeast
bicarb makes the yeast stronger. Not what u want yes great for pain. When the burning gets out of control for me I use homopathic if the dose change isn't working. I drink more water I take epson salt baths. I know Matia has said no to some about the homopathics I know a few others who do also use it on the boards. Another IC patient had told me about them but not one of Matia's patients. I will put a hot wet washcoth on my urethra vaginal area. I know matia has said No to ice and I am not sure why I foreget but sometimes just for a second the ice does wonders. I find if the heat is making me go a lot and not taking the pain down just inserting a sliver of ice vaginally helps a lot. small enough for it to melt after about one min. I may even go back to hot after this. I drink warm to hot water as well try to relax everything as much as possible. I put on either funny movies or Kelly howell CD because a distraction is very powerful and although doesn't remove the pain if I think about it more the pain gets worse. There is something about positive reinforcement that will change those pain memories and help make new ones to allow the healing process.
WHen I am in pain if I am to take something i always ask myself is this going to prolong my treatment? IF it is something that is going to provoke latency then I email matia and do the above. I call someone who understands if I am up to it. I know with all my heart this sucks and I know some look to it as a blessing but I am done with my lesson and I would like to help people. I need to heal and move on.I Know people are over it pain day in day out just is exausting and you need to remember to cut yourself slack. Live up to your own expectations not anyone elses. Know in your heart you are getting better look for the little things and say this is not forever. Maybe some affermations are what is needed.
Much love
nicole
I hate the burning too!
I'm also going through a period of constant and painful burning, it's been a long time that it felt so annoying. I'm wearing skirts all the time because I can't tolerate my trousers anymore. I also wonder about underwear, do you all use cotton underpants? I tried it for a while but I didn't feel like it made a difference for me... Honeybee, do you mean burning when you mention inflammation? I'm almost 1 year in treatment now and my main problem is the urethra/vaginal burning.Vicky
yes
I thought burning was a result of inflammation. Is this incorrect?This could be a good question to ask in our next conference call- - what are the different sensations of pain/discomfort in theIC spectrum and what causes what?There are differences and different things seem to help or not help. I get different types of pain and have developed a mental catalogue for these sensations. I have burning in urethra, I have sandpaper from VV and sometimes a specific pain that comes from the probiotics transition. I have had dull blunt fixed pain in VV and in my bladder and Pelvic Floor muscles. I've had urgency frequency and inconitent feelings from the inflammation that rises and falls. It took me time to be able to sense and describe these sensations! Hope this is helpful and not confusing!Mary
Ria, I feel for you.
Ria, I feel for you. The experiences & sentiments Honeybee expressed in her first post are so similar for me too, so take heart that you're not alone. I agree w/ Honeybee that in some ways what's harder than the diet or the die-off or anything else is the constant up & down that plays with our emotions... even though we know better, to not get too excited by the up's nor too surprised by the downs.... and yet EVERY time for some reason when I feel better it really truly feels like "Hooray, this time my IC's gone for good!" and then the second the pain comes on it's like, "Oh my god this'll never be over!" .... literally swinging from one extreme to the other when I know better & know that clearly isn't the reality... and yet you can't help the emotions. What I realized after Honeybee's post (thanks Honeybee!) is that part of the reason this up & back triggers me so much is from my childhood of abuse ....where one minute they'd hurt you and the next they'd tell you they loved you... and even though I so wanted to hear the "I love you," I disdained them so much for all the hurts that I'd get mad at myself for wanting that, and for getting my hopes up each time they said they'd change, only to be eternally disappointed and further injured. This up & down emotional cycle completely mirrors that experience.... and I wonder if it isn't similar for other patients, not just those w/ a history of abuse (though curiously many have this) but even those who've faced other difficult life circumstances.
Childhood abuse and IC
Dear Hope,
Profound observations; I have been reading a book by Dr Alex Loyd called the Healing Code in which he states that almost all diseases are caused by unresolved subconscious memories such as occur in childhood abuse. The issue associated with bladder illness is TRUST, trust which is destroyed by abusers.
Ovulation and Hormones
Hi Ria,
I am in your camp... Usually I will fine and then BOOM! something makes my bladder burn... I have pinpointed them to two things:
1. ovulation!!! OMG... Matia says that the production of progesterone really really stimulates yeast production...
2. somethings made with brown rice flour... sets off a bunch of other people on the board as well as myself
It is a huge downder and I definitely know how you feel...I get very discouraged when I go from feeling so good, to feeling wildly lousy... It is like, where did this come from? I thought I was better? Will I ever get better? It is an emotional roller coaster...
Thanks everyone and you are
Thanks everyone and you are quite right...it is the emotional rollecoaster. Before I saw Matia I had a 4 month remission. My flares had gotton less and less painful. They were always brought on by either bedroom sports or fruit juice. But whilst in remission, I could eat, drink, even have physical contact. I really thought I had beat it. It came on again worse than before and before finding Matia I found a doctor that specialised in dmso treatment but it cost thousands. He was a lovely doctor but then I questioned the fact that even if I were to receive treatments, this disease believed to be 'auto immune' would eventually attack the bladder again...another reason why they don't do bladder transplants in IC patients. The process starts all over again.Thankfully I feel MUCH better today, but one thing I did do yesterday was pop to the chemist and buy some stick on heat patches. I really didn't think that would work but I was so desperate as my boss kept firing projects at me and I could barely concentrate. They were actually really really good...and I was surprised it lasted over 9 hours. Really took the edge off.I am trying to do more meditation now, and am going to a chiropractor and starting yoga. I know not everyone on here is heavily into spiritual things but I will say one thing...healing does not take place when there is fear and I know personally that when I am upbeat, I get over the flares quicker. Apparently yoga is wonderful for chronic illness and very uplifting for the soul. Look after yourselves :o)
Look here
Look here ;
http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html
Autoimmunity can be reversed.