Day 1 Where do I even begin

[Katy Elise]

Hello all. I am so happy (and scared) to be here. I will try to make this as brief as possible.

I am 32-year-old woman and have been on a mysterious health whirlwind for the last 2+ years. At the age of 30, just weeks after graduating with my Master's in Social Work, a slew of 50+ symptoms came on that I have been working to find their root cause ever since. From needing to sleep 20 hours a day, to not having the energy to stand up, to roving body pains and numbness, ear ringing, dizziness, severe nausea, you name it, it was there.... There have been no simple answers, and I have done tons of research on my own. I have slowly regained my ability to do most things, but I still suffer from chronic fatigue and sleep issues, brain fog, extremity numbness, TMJ, chemical and food sensitivities, neck pain, and other symptoms depending on the day. My first diagnosis came a year and a half ago as Hashimoto's autoimmune thyroiditis, but with treatment (from levo to Armour to a very lose dose compound hormone now) that has not seemed to be the culprit of the symptoms. I have continued working my way to more answers, depending on expensive out-of-pocket functional medicine doctors, supplements, and organic autoimmune diet healing foods to see very marginal progress. In the fall I was diagnosed with arthritis in my upper cervical spine and my chiropractor told me I would need to see a chiropractor every month for the rest of my life due to its severity. At the same time I was diagnosed with CIRS due to mold biotoxin illness (and associated yeast, bacteria and parasites). I have been working on a detox regimen to rid my body of the mold biotoxins for the last 2 months, but the detox itself makes me so sick, no matter how slow I go, that I'm questioning whether this is the right path for me. Last week I stopped the detox and restarted Dr. Sarno's book which I had barely broken open based on a friend's recommendation this fall.

Long before I had these major issues, I had more minor ones: anxiety and depression including panic attacks from age 10 on, IBS from age 16, and severe gut issues upon living in China and returning at age 24. Haven't had a normal poop since. I was also put on prozac for anxiety at age 16 and have unsuccessfully tried to get off it a number of times, so I realize that the symptom imperative here is very real.

Reading the Divided Mind has been emotional for me - both very exciting/hopeful, and also fear-inducing. ('What if it won't work for me?') The TMS reasoning makes absolute sense. I am an extreme perfectionist, overly caring (social work, hello), work myself to the bone for my jobs and to meet my family's expectations, and had a very difficult childhood emotionally. For me, the hardest part of beginning this process is how the discussion is centered around pain, and my symptoms are many things but infrequently actual pain. I keep thinking "I don't have back pain - I have mold spores growing in my gut!" It is probably not helpful for me to zero in on my discordant experience, but every time it's stated that I must fully embrace the diagnosis I fear my doubts will prevent it.

I do know I'm tired of playing the medical tag you're-it game and tired of hearing these tragic life-long diagnoses. (For mold, I am supposedly "genetically" unable to live in over 90% of buildings, or even spend more than a few hours in them, because of my sensitivity to mold and how prevalent it is in indoor environments. For me, someone who lives to travel and explore and rarely stays in one place more than a year, this is like a deathwish. What's the point of living if I can't feel like I'm living?) I'm so ready to take my healing into my own hands and mind, and hope I can do that here. I'm willing to do whatever it takes. Thanks for reading this far if you made it through, and here's to be hopeful if still trepidatious!

 

[ssxl4000]

Howdy and welcome. I'm sorry to read the whirlwind of troubles you have dealt with. A few things...

Your story reminds me somewhat of mine. My TMS started with headaches and allergies at age 9 that slowly got worse over the years. At age 21, my IBS and constipation started and slowly worsened over the next decade. Finally, a period of major stress 3 years ago (age 32) put me in the hospital with stomach/gut issues, then I got mono, and I never recovered. I had all the symptoms of "Chronic Fatigue Syndrome". My IBS also went crazy. New stuff kept popping up, including joint pain, memory issues, fatigue, breathing problems, headaches, cold symptoms, leg weakness, and on and on. This lasted for almost a year and a half until I learned about TMS, and since then all has slowly gotten better.

the hardest part of beginning this process is how the discussion is centered around pain, and my symptoms are many things but infrequently actual pain.

This is common. TMS or MBS includes a whole range of "non-pain" symptoms. It's all just different chapters in the same book as far as I'm concerned. There are plenty of people here, including me, who have found improvement or healing from things other than traditional musculoskeletal pain. Remember that Dr. Sarno was a pain specialist, so that was his background. However, he acknowledged that all sorts of issues can be TMS related. You will find material in the structured education program that builds on this. Or, if you want supplements, I would suggest reading Dr. Howard Schubiner, who takes a more recent look at TMS/MBS and all of the shenanigans it can cause.

(For mold, I am supposedly "genetically" unable to live in over 90% of buildings

When having doubts about symptoms, I like to remember something Dr. Sarno wrote. He basically said that conditions that exist from birth are generally "structural," whereas many things that pop up later in life and have no clear physical cause are actually TMS. I don't know all the details of your mold diagnosis, but if you didn't have these problems as a child, that's good evidence that the symptoms are TMS related.

This program can make you feel better immediately, or it can takes a long time. Either way is fine. The most important thing is that ideally you eventually come to the realization that there is nothing physically wrong with you, and you don't have to worry/fear/obsess over your symptoms anymore. The program can definitely help you get there, so good luck and make sure to reach out if you have concerns or questions.

 

[Katy Elise]

Howdy and welcome. I'm sorry to read the whirlwind of troubles you have dealt with. A few things...

Your story reminds me somewhat of mine. My TMS started with headaches and allergies at age 9 that slowly got worse over the years. At age 21, my IBS and constipation started and slowly worsened over the next decade. Finally, a period of major stress 3 years ago (age 32) put me in the hospital with stomach/gut issues, then I got mono, and I never recovered. I had all the symptoms of "Chronic Fatigue Syndrome". My IBS also went crazy. New stuff kept popping up, including joint pain, memory issues, fatigue, breathing problems, headaches, cold symptoms, leg weakness, and on and on. This lasted for almost a year and a half until I learned about TMS, and since then all has slowly gotten better.


This is common. TMS or MBS includes a whole range of "non-pain" symptoms. It's all just different chapters in the same book as far as I'm concerned. There are plenty of people here, including me, who have found improvement or healing from things other than traditional musculoskeletal pain. Remember that Dr. Sarno was a pain specialist, so that was his background. However, he acknowledged that all sorts of issues can be TMS related. You will find material in the structured education program that builds on this. Or, if you want supplements, I would suggest reading Dr. Howard Schubiner, who takes a more recent look at TMS/MBS and all of the shenanigans it can cause.


When having doubts about symptoms, I like to remember something Dr. Sarno wrote. He basically said that conditions that exist from birth are generally "structural," whereas many things that pop up later in life and have no clear physical cause are actually TMS. I don't know all the details of your mold diagnosis, but if you didn't have these problems as a child, that's good evidence that the symptoms are TMS related.

This program can make you feel better immediately, or it can takes a long time. Either way is fine. The most important thing is that ideally you eventually come to the realization that there is nothing physically wrong with you, and you don't have to worry/fear/obsess over your symptoms anymore. The program can definitely help you get there, so good luck and make sure to reach out if you have concerns or questions.

Thank you so much for sharing your story with me - it definitely does look a lot like mine in many ways. It's also very validating to hear that the non-pain symptoms are very common, and I look forward to exploring this further in the SEP and by looking into Dr. Schubiner's work. And it's good to know that even if I'm not magically "cured" all of a sudden, that doesn't mean it isn't working. Thank you for your kind wishes - it already feels more possible knowing I have this community of like-minded people (and success stories) to turn to. All the best to you as well

 

[Mame]

Hi Katie, so sorry to hear about all of your troubles. I too started having symptoms as a young child, although I would have said that they started only three years ago until I read Dr. Howard Schubiner's book "Unlearn Your Pain in 28 days". I don't know what age I was, probably around 6-7, when my doctor diagnosed me with a "nervous stomach". Basically, certain situations would cause me to feel sick to my stomach because they made me feel so anxious. Now a days, I feel that anxiety as a knot in my chest and heart flutters. I suffered from headaches when a I was small continuing into the present, and in my late 20s turned in to migraines that could last nearly a week.
I wouldn't call my childhood difficult, but I a had an authoritarian father who held us all to the highest standards and a very empathetic mother, from whom I think I inherited an excess of empathy. The combination has made me a perfectionist, people-pleaser, and extremely empathetic (I cry when the big gorilla dies in the cartoon version of Tarzan.) So empathize with your situation.
I also, don't know about your mold diagnosis. My former boss was diagnosed with some sort of mold growing in her gut, and a wide variety of other diagnoses, because she had this chronic cough that would sometimes cause coughing and choking for minutes at a time. She followed this horrible regimen to dispel the mold but the cough remained.
However, it still sounds like TMS and though I am not symptom free yet I do believe that TMS is the correct diagnosis for me. No doctor can find a physical reason for my tension and pain.
I also believe that this program will help me recover. I did the "New Program" (also available on this wiki) designed by Alan Gordon and dispelled two of my symptoms by using techniques learned during that process. I am confident that as I continue my journey through this program and reviewing TMS books from Sarno and Schubiner that I will be able to dispel the rest.
I wish you all the best. I think that here you can find hope and support that will help you on your journey.

 

[Ariana]

Hi Katy, thanks for sharing your story with us, and I'm sorry you've struggled so much. I feel a lot of similarities with my own story - I'm 32, struggled with anxiety most of my life, developed IBS symptoms at the age of 14, and then in my mid-20s whilst studying for my Masters, severe chronic pain and fatigue began. A (very!) long story short, I ended up bedbound with both. But since seeing it ALL through the mindbody lens and using these approaches, I am 50% recovered (although this did take time, and there were certainly moments of frustration at not seeing progress)

I echo what others have said that Dr Schubiner is a wonderful resource - you can work through his book or his online program, and even just the blog posts on his website are really helpful. Also, have you used the Curable app? It's a program that combines all the latest in TMS/neuroscientific approaches to pain/symptoms. And I agree with the others that TMS does not have to manifest as pain, but all manor of strange symptoms. Perhaps you could hunt down some success stories of people with non-pain symptoms to support your belief? Keep us updated - you're not alone!

 

[Katy Elise]

Hi Katie, so sorry to hear about all of your troubles. I too started having symptoms as a young child, although I would have said that they started only three years ago until I read Dr. Howard Schubiner's book "Unlearn Your Pain in 28 days". I don't know what age I was, probably around 6-7, when my doctor diagnosed me with a "nervous stomach". Basically, certain situations would cause me to feel sick to my stomach because they made me feel so anxious. Now a days, I feel that anxiety as a knot in my chest and heart flutters. I suffered from headaches when a I was small continuing into the present, and in my late 20s turned in to migraines that could last nearly a week.
I wouldn't call my childhood difficult, but I a had an authoritarian father who held us all to the highest standards and a very empathetic mother, from whom I think I inherited an excess of empathy. The combination has made me a perfectionist, people-pleaser, and extremely empathetic (I cry when the big gorilla dies in the cartoon version of Tarzan.) So empathize with your situation.
I also, don't know about your mold diagnosis. My former boss was diagnosed with some sort of mold growing in her gut, and a wide variety of other diagnoses, because she had this chronic cough that would sometimes cause coughing and choking for minutes at a time. She followed this horrible regimen to dispel the mold but the cough remained.
However, it still sounds like TMS and though I am not symptom free yet I do believe that TMS is the correct diagnosis for me. No doctor can find a physical reason for my tension and pain.
I also believe that this program will help me recover. I did the "New Program" (also available on this wiki) designed by Alan Gordon and dispelled two of my symptoms by using techniques learned during that process. I am confident that as I continue my journey through this program and reviewing TMS books from Sarno and Schubiner that I will be able to dispel the rest.
I wish you all the best. I think that here you can find hope and support that will help you on your journey.

Mame I identify with a lot of what you said. Congratulations on eradicating two of your symptoms - that's fantastic! I love your positive attitude, and I agree that you will be able to dispel the rest. I am feeling quite confident at the moment myself. Here's to having found this wonderful community and program!

 

[Katy Elise]

Hi Katy, thanks for sharing your story with us, and I'm sorry you've struggled so much. I feel a lot of similarities with my own story - I'm 32, struggled with anxiety most of my life, developed IBS symptoms at the age of 14, and then in my mid-20s whilst studying for my Masters, severe chronic pain and fatigue began. A (very!) long story short, I ended up bedbound with both. But since seeing it ALL through the mindbody lens and using these approaches, I am 50% recovered (although this did take time, and there were certainly moments of frustration at not seeing progress)

I echo what others have said that Dr Schubiner is a wonderful resource - you can work through his book or his online program, and even just the blog posts on his website are really helpful. Also, have you used the Curable app? It's a program that combines all the latest in TMS/neuroscientific approaches to pain/symptoms. And I agree with the others that TMS does not have to manifest as pain, but all manor of strange symptoms. Perhaps you could hunt down some success stories of people with non-pain symptoms to support your belief? Keep us updated - you're not alone!

Ariana - thanks for stopping by! Wow, we do have a lot of similarities. I'm so very pleased to hear you're 50% recovered! I'm sure that has made an incalculable improvement in your quality of life. Thanks for the recommendations too - sounds like I definitely need to read Dr. Schubiner next! I did try the free version of the Curable app for a bit but the way the information was presented felt a little overwhelming to me so it was easier for me to pick up Dr. Sarno's book - based on what you've said perhaps it wouldn't hurt to look further into the app now that I'm really doing this. Keep up the good work and thank you so much for your kindness and support!