Forums:
Hi everyone! This is actually my first time posting a topic on any of the forums even though I have been in treatment for almost a year. I'm a bit shy by nature and am not quick to reach out for support. (Though I frequently read and enjoy other forum topics and reponses).
As I mentioned, I have been in treatment for almost a year. My IC was very severe when I started, and my pain was through the roof. I would say within two weeks of starting Matia's treatment protocol I was already seeing dramatic improvement. The first six months of my treatment seemed to go smoothly and I was progressing very rapidly. That is not to say I felt perfectly, or that treatment was easy. But I definitely saw dramatic improvements. In March I had a consultation with Matia and she allowed me to move to list 4, and told me "Wow, you are going so fast." I was really happy and excited after suffering with this disease for so long.
But that all changed soon after. My progress slowed dramatically and even seemed to stop soon after. My early June I was actually seeing a slight increase in symptoms; more flare ups, slightly higher pain levels, more joint pain, less energy etc.... this really scared me. I have tried to be very strict on the diet and herbs etc....and I coulnd't figure out why my symptoms were increasing. I talked with Matia and she made a change to my herbs which did help. I have improved a little since then, but I feel like I have plateaued and I am stuck! My symptoms are still worse than they were back in March and I am so scared of regressing or having to take a few steps back in treatment; particuarly because I can't identify what is contributing to this problem.
I am still feeling 100X better that I was before I started treatment, but I am feeling very discouraged and wondered if anyone else has had any similiar experiences or had any advice or words of encouragement.
Thanks,
Emily: Unfortunately yes, yes
Emily:
Unfortunately yes, yes and yes. I can totally relate! This is my second time in treatment, 4 years ago it was a really quick ride for me, I progressed to list 4 withing 8 months. I thought it was all over for me, I was one of the few lucky ones. Wrong! After pregnancy, breastfeeding and forgetting to balance my meals and eating sushi my symptoms returned. Not as bad as the first time but still devastating. This time around it took us 8 (eight) months to find the formula to ease my symptoms and still after 2 comfortable months my symptoms are trying to return AGAIN. I think unfortunately I am a pro at this by now,and am absolutely sure there is no short or easy way out no matter how similar or different our stories are. You and I and all of us here WILL get better and stay better but not before doing a couple of terribly long, terribly hard rounds.
Hang in there, you will feel better soon!
Me too
Hi Emily,
Sorry to hear about your woes... I have been in treatment for about 3-4 years and I felt really great in the first couple of months and made very quick progress. I will make absolutely clear though that I have cheated sooooooooo much through out treatment... so keep that in mind as I post.
That being said, I have noticed plateau like you and I think that is why I ended up cheating. So don't get discouraged. I think possibly going to list 4 might have caused your problem and it is so hard to have to go backwards. Take a diary of what you are eating and it probably is too much sugar. I think we are really only supposed to have one serving of fruit. When I got promoted to list 3, it was like a death sentence for me almost. I felt like I had free reign. There also may be just some things you cannot flat out tolerate. I understand that for many people who don't even have IC that dairy and wheat are the biggest allergens. A common symptom for people who just have regular old allergies and nothing else like IC is going to the bathroom all the time. So maybe start elliminating.
Good luck! thanks for posting.
Thanks...
Thank you both for sharing your experiences, suggestions and words of encouragement. It actually made me feel a lot better, and I have decided to start a better and more consistent food/symptom diary and see if I can't find something that I have been missing. I will also be following up on some problems with my apartment. I had a pipe blow a few weeks ago, and my apartment is starting to smell "moldy", and I wonder if that might also be playing a factor. I guess we will see, but your comments were greatly appreciated!!
Thanks!