Hi everyone! My name is Lauren and I live in Seattle. I had a horrible bout with Interstitial Cystitis 15 years ago while pregnant. It disappeared until it came back last July when that baby I was pregnant with the first time was about to enter High School. I am wondering if anyone else has dealt with this TMS issue? I would love to meet other people who know about TMS and also live in Seattle. I would love to create a support group for people who understand about TMS and live in this area. Moral support is something that I think is so important and hard to find! It would be so especially helpful when doubt and fear creep in! I would love to offer support to others on this journey as well! i am working so hard on healing but feel so stuck and so very stuck on the food as 'dangerous'. Thank you for the words of wisdom on these pages!
Yes, the symptoms of IC are simply a manifestation of MBS. That is clear. So, you can keep working on calming your brain and stopping fear and worry. Your symptoms will get better!
There are a number of people in Seattle who are interested in this approach. I think if you look on my website, unlearnyourpain.com and click on the Other Resources link. You will find some people there you can contact.
There is also a good facebook group on TMS (tension myositis syndrome).
Howard, thank you so much for your reply! I will check your website and look under the other resources info. I really want to find a group of people to support each other in TMS work. it is so hard to contain the fear and the worry in a vacuum of sorts. In that so many people I meet in my everyday life think very differently. I was trying to address my fear of foods by having a coffee and several people I know couldn't believe I would do something so 'foolish'. The fear and the pain skyrocketed after that and I was like a turtle going back into my scared shell. My goal is to inundate myself with people who understand MBS to help reinforce my own belief and courage. All the best to you, Lauren
I am so glad you wrote in and sorry it has taken me this long to respond.
I battled IC for 15 years and felt hopeless until I 'met' Dr. Schubiner. He helped open my eyes to the truth: MBS. I began the program and after all those years of being in pain I began to heal. It took a few months of renewing my mind but by six months I began having more good days than bad. Within a year, the pain was pretty much gone. Now, it is always gone.
I am so very thankful for IC because I would not have learned to 'give my heart a voice' (something I began saying as I went through Dr. Schubiner's program) had it not been for the physical pain that grabbed my attention. I learned how much shame, anger, fear and sorrow I carried but never voiced.
You CAN heal. I know it gets exhausting. I know it is so very hard. But do not be afraid of the symptoms. They are just that... symptoms. The root is within your mind and the symptoms are just inviting you to speak out, cry, rant, process, and then trust and accept.
Blessings on your journey!
Wendy thank you so much for your reply. Hearing your story means the world to me and gives me hope. I have printed it out to add to my evidence/ healing board. I am wondering if you would ever talk with me on the phone or something like that? I am desperate for some sort of sponsor. But to even just talk once and hear your story would be amazing. I am so scared and frustrated and it seems like the whole world sees IC as a progressive incurable illness. It makes it so freaking impossible to contain the worry and fear to calm the nervous system. I have an amazing psychotherapist who also treated very excruciating IC of her own with a Mind Body approach. Consulting with Dr. Sarnos and also Dr. Schubiner. I have made some progress over the last six months through my journaling , therapy, and meditation but have gotten stuck. Well meaning people trigger so much additional worry and fear around food and drinks. The symptom imperative has added hideous anxiety into the picture. Which is extra special because managing fear and anxiety is the path to freedom as I understand it. Once again, Wendy thank you for replying to me post sharing both your success and the gifts received in your life through the process. Lauren Zuzic
I would be very blessed to share my story with you. Anything to encourage you. I well remember the lonely and discouraged feelings. Hope is powerful! I love the stories the other ladies shared. It is so beautiful to encourage one another and speak hope to each other.
Here is my email: email@example.com
We can 'talk' further and exchange phone numbers. Thankfully, it is a little easier as we are in the same time zone. I am in the Pacific Northwest.
I was diagnosed 3 yrs ago w/ IC. I had doubts about the diagnosis b/c the doctor hardly asked me any questions. He just wanted to put me on medication and get me out of the office. Long story short, but it turns out my badder was fine, but my pelvic muscles were tense and were putting pressure on my bladder, which led to urgency/frequency, etc. Of course the issues created more tension b/c I was terrified of the pain and diagnosis so it was a snowball. I went to a pelvic PT who did internal work. I had relief almost immediately. She taught me some things I could do at home to loosen my pelvic floor and I have only had one flare up since. Since I knew what was going on I went to the pelvic PT and did my home stuff and it only lasted a few days. I don't live in Seattle so can't help you locally, but please know that your diagnosis is not a sentence!!! And could potentially even be an inaccurate diagnosis. IC doesn't exist a few yrs ago, there was something about that in Sarno's book. Good luck!
Tawny, thank you so much for responding to my post! i am very glad to hear you found relief from the bladder pain and discovered it to be referenced from the pelvic floor. I have tried PT without much success and unfortunately allowed a cystoscopy after which my urologist told me i had little hemorrages or something like that in my bladder. This information caused dramatic increase in fear and anxiety. If IC, as it is classically described in Western Medicine, is an incurable deficiency in the bladder lining, it doesn't not explain why I was not bothered by it for 15 years. This fact is a big one one my 'evidence sheet' . I have had a long history of mind body syndromes and believe (or try very very very hard to :)) this to be another one, but find beating back the terror and doubt to be very difficult and very lonely as when you try to talk to people who don't know about it or a reg doctor the theory is often times completely dismissed. That's why I am looking for people 'awakened' to the mind body connection to surround myself with. Thank you again for sharing your recovery story! Lauren
I totally understand what you mean. It's a VERY lonely and scary place, that no one seems to understand. All you want is answers, and the only thing you get is more questions. One thing I learned w/ TMS is that there ARE real symptoms/pain. It's not made up in our heads. The thing that helped me convince myself that the pain was TMS was the research that shows that there are many people w/ injuries, in your case blood in the bladder, but they aren't getting diagnostic tests, so they don't even know they have those issues, and hence don't have the pain. But when we see the evidence w/ our own eyes, we are further convinced something is wrong and the pain is justified. I think it's ok that you still have doubts, just think of your body as a little kid who you're convincing that things will be ok. "You're ok, you're safe, it's just temporary, it's a warning sign, but you got this, etc." Eventually your brain will hear/understand those messages and believe them to be real. As soon as some of the symptoms dissipate, so will the doubt. By the way, have you tried the Curable app? I did it along side this program and it REALLY helped! They have recovery stories from other people you can listen to, that helped me the most. They also have a private forum on facebook, you could definitely find some local folks on there. They have a free version to give you a sense of what's it's all about - I think it's worth checking out.
I would forget about all of your friends, tests, doctors, books, and everything else for a couple of days and rely ONLY on your intuition about what is going on. You don't need to look externally for help or answers because they're all inside you. You got this!
Hi Lauren, I have lived your story! It started when I was ten years old after being bullied at school. In those days they didn't have diagnoses like IC like they do now. After a visit to a urologist when I was in such pain I could barely stand up, he told me that this was a classic psychosomatic symptom. Within five minutes I was feeling 100% fine--no pain at all. But when the symptoms came back, doubt crept in and the problem continued on and off for years. I am now free of this symptom--although once and a while when it rears its head, I know it is just a symptom (I don't become afraid) and it goes away. I will add that once this symptom went away, it was replaced with another one. It is very difficult to believe that so much pain does not point to something "wrong" with the body--that is why it is so difficult to shake the symptom. I have had many TMS symptoms over my lifetime but will not bore you with the details. For me I think the symptoms covered a deep fear of abandonment that I did not what to feel. Our medical system is focused upon viewing the body like a car--with parts that need to be fixed or replaced--with very little understanding or acceptance of the body as a whole. I can attest to the fact that TMS does exist and is a huge trickster as it is very hard to overcome doubt. For years I thought that I had a "bad body"--that I was different than other people. This was not true as I am very healthy. I have been in therapy and dealt with a great deal, but this was the hardest--kind of like my body was attacking me--that it was my enemy--and it resulted in a sense of negativity. Or maybe the reverse--that my negativity was directed at myself. By the way, limiting what I ate or drank made things worse--only made me feel deprived, different, and resentful. I will add that whenever I started feeling better, I started worrying that the symptoms would come back--and, of course, they did--and, of course, I defined that as proof positive that there really was something wrong with me. My brain wanted me to stay put--and hold onto the pain--and, as yet, I have no idea why. Dr. Sarno was right on when he discovered TMS! Good luck in your journey and avoid talking to people who don't understand what is going on with you. They will only arouse more doubt. Hope this helps! Best, Susan
Susan, I have read and reread your post about five times already. Just doing so makes me feel so much less alone and that there is someone who truly understands what this is like and how hard it can be to overcome the doubt and the fear. Thank you so much for taking the time to respond.
I am inspired beyond belief by your struggle and the incredible work you have done to understand your mind, body and TMS. I am grateful that you mentioned the food aspect because it is an extremely difficult one for me to negotiate as I try to treat TMS in a larger medical culture that creates a huge fear base 'threat' around foods considered 'dangerous' to IC. One of my earliest TMS syndromes which I thought was the worst, until the IC, was anorexia nervosa as a ten year old and which kept me hospitalized (and safe in a weird way when I was in there) for several years. By the time I was a young adult I had developed if not a healthy, at least a functional, relationship with food. Until now! At 46 years old, when I find myself re-visiting this nightmare with food fear which I had long since thought had been put to bed. It's no joke but still the absurdity of it all is almost funny! I would love to hear how you were able to 'ignore' all the messages that if you eat certain things you will cause a 'flare'. I would love to hear anything about your IC and other TMS experiences that you may feel open to sharing. I drank a coffee this morning and you would think I was bracing myself for an atomic bomb to hit my home at any moment from the sheer terror and guilt I feel over it! You would think I had killed a man by the way I'm figuratively am looking over my shoulder every two seconds for the cops to come arrest me! This is tough work no doubt about it and I doubt I am alone in saying I have much jealousy of those who experience book cures :) ! My email is firstname.lastname@example.org if you ever would like to reach out privately , Bless you and I hope you have a day in which you treat yourself patiently and kindly, Lauren