Never ending flare I suppose...

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This is month 5 of treatment with Boaz for me and have never had a break in the pain since IC began. I'm not sure if this is a never ending flare or what. Anyone else have the same torture but eventually got relief? I'm struggling and need some advice. Some of you responded in our Facebook group but wanted to post on ICAMA as well:)

Mrs. A's picture
Mrs. A

I am so sorry Jessica. I don't have this, my flares come and go but are very intense and debilitating. I am pretty much stuck in the tub. The worse one I had lasted three weeks. That was well over a year ago. I try to eat calming foods...for me that is fish or chicken and Dr. B's soup. Plus lots of water. I also keep in close communication with Dr. B as there might be a tweak in protocol to give relief. You are in such good hands. I am 2 1/2 years into treatment, and the first year my bladder was at such a tender stage. Stick closely to the diet, it will help you a lot to stabilize. I learned after my last horrible flare to never try something new or put something new on my body without running it by Dr. B first. I am praying for you. Keep us posted on how you progress in getting better! Love to you.

deir's picture
deir

I am also up and down from the start but I can tell you for sure I have read many people on here who had neverending flares (could it even be called a flare?) and they slowly  improved. Even Ally said it took 8 months to see any improvement at all.
((((((((hug)))))))))

ejh's picture
ejh

Hello Jessica,
I'm not a part of the Facebook group (how do I get in on that?) so I'm sorry if others have already covered what I am about to say.
I am in my 5th month of treatment also and I experienced constant pain either in my bladder, urethra or vagina (sometimes all at once and sometimes more and sometimes less) until the last couple of weeks during which there has been some respite.  The following are things I think calmed down the situation: 1. total surrender to the diet - no cheating.  I eat cooked in butter celery, brocolli, brown rice and either chicken, beef or fish at every meal.  While I generally adhered to the diet for the first 3 months, I would have a bite of contraband here or there sort of "reward" like or when I was preparing dinner for the rest of the family.  Now I don't and interestingly, I haven't really missed the foods I can't eat. I know it is temporary and this phase of restricted  eating will pass.  2. changed my water.  Turns out after trying out a bunch of waters at the start, I settled on a pricy one that turned out to have minerals put into it. I'm not sure how I made such a dumb mistake (brain fog maybe?)  3. I finally got my period.  I had a period in January around the time of my first appointment with Boaz.  I didn't get another one until just recently.  Getting my period brought some relief.  4. I stopped having baths.  While I love baths and thought the warmth was soothing,  I tested it out and I was flaring even more a couple of hours after bathing so now I only take showers.  5.  I cut out herbal tea.  Every once in awhile back in the colder weather, I would drink some herbal tea. I thought it was innocuous but again I registered that I was in more pain after drinking a weak chamomille.  6. A change in protocol.  I believe I started to feel better when Dr. Brizman increased my RPs and decreased the detoxing herbs.  7.  I am resting more.  At the start, I thought I could absorb this treatment into my hectic life. I have learned  that I had to just give into the treatment. I have cut back on commitments and have gone "underground" so to speak. I have made my healing a priority. Since I took ownership of this treatment, things have fallen more into place. Before I did this, I somehow thought I could just take the protocol and do the diet and keep going at a frenetic pace. I now understand that healing takes time and I better just settle in for the ride.
A couple of weeks ago, I was in your boat.  I was doubting the protocol and wondering if I was wasting my time/money/emotional energy.  My husband kept telling me to look at how far I had come since being in treatment. When I think about where I was a year ago,  I'm amazed at how far I have come. Even though I still have bladder/urethra/vaginal pain so many things have improved for me.  I have energy and don't drink caffeine.  I fall asleep easily and I'm not taking sleeping pills, I'm having BMs everyday and I'm off laxatives (that's a huge improvement!) I'm not drinking any alcohol, eating sugar or consuming gluten. I'm not bloated.  I don't feel nauseated.  I'm not in a fog.  And most importantly, my anxiety has dissipated.  While my IC symptoms were paramount in my mind when I decided to get treatment from Boaz, it turns out my feelings of anxiety were really hampering my well being.  It wasn't until they were gone that I understood this.  Focusing on these positive improvements helps to keep me positive.
This website has also kept me going.  Anytime I have a new symptom or question things, I take solace in the insightful information these thoughtful women have proffered here.  I feel very fortunate to have found this site.  Observing the level of commitment some of these women have to their healing has been inspiring.  Also, I read "The Healing Crisis" which was very helpful.
I understand when you speak of the never ending flare. I was experiencing that also.  While I was convinced that it had to do with the protocol, I now see that I had to change some of the things I was doing and my attitude.  When I started, I was applying a Western perspective to this treatment.  Somehow I thought the protocol would end the pain quickly.  I got frustrated when that wasn't the case.  One day I decided that if my family wouldn't be going to Disneyland this year due to the holiday money funding my treatment, I better just jump into the deep end and commit myself completely to the regime.  Best decision I have made in a long time!  
Good Luck.  Please feel free to email me if you want to discuss further.

ejh's picture
ejh

One more important thing - HANG IN THERE!  I was really down in the dumps right before the pain started to let up a bit.  The pain was worse and more persistent on the protocol than before I started treatment and that fact was getting me down.  Now I feel so much better and I believe things had to get worse before they improved.  The persistent pinching and aching and stinging has really dissipated and is way less intense.  I spoke to Boaz about the relentlessness of the pain and that is when he switched up the protocol.  I write down my worries/feelings before my appointments with him so that I can apprise him exactly of my concerns.  I feel for you and hope you can get some relief soon!

fahlmank's picture
fahlmank

Ejh, What great insights in committing you have shared in getting the treatment to work for you! These were many of the same realizations I came too as well. I did want to add one thought about the bath- I love baths, but also found that the heat, which moves lymphs, would cause an occasional flare. However, I bought a bath ball that takes the chlorine / bacteria out of the bath water and that enabled me to take baths without problems once treatment started moving;) Congratulations in your success!
Katie

Mimij67's picture
Mimij67

Ejh those are some very good observations. Just the fact that you looked so closely at how you were doing the protocotol, that you have become so much more careful about every aspect is going to serve you very well. For some it is the difference between healing and not healing (or healing much more slowly). Things that we unknowingly do that seem so harmless, like drinking herbal tea, can really confuse the process. The doctors have know way of knowing if and how their protocol changes are impacting us if we have other things in the mix. The observations about added minerals in drinking water, herbal teas, and hot baths are spot on. I did not take baths for a long time (still dont, although Katie's suggestion of the bath ball is a good one, I am too lazy to run the bath tall through the water for 10 minutes LOL). GOOD FOR YOU! and THANKS FOR SHARING!! Keep up the healing! (also a note about brown rice. If you find you are tollerating other things like spelt flour and pasta, or basmati rice, change it up a bit sometimes. Brown rice is very fibrous and maybe good to mix in other things as you tolerate them (also for variety!!!) Hmmm this is spoken from someone who is not a fan of brown rice LOL and I have made a lot of progress without eating any! Just another perspective. :)

If we don't excel at health, the only other option is disease.

JessicaA's picture
JessicaA

Thanks everyone for all the helpful responses. Your all absolutely amazing and supportive. I will keep you all updated. I have a feeling that my pain increased the last two weeks due to the Paradise Rhodiola. Boaz took me off Rhodiola as of now but hope to get back on Eclectic Rhodiola soon. I pray this toe curling relentless pain settles down.