How I healed from a myriad of symptoms

Hello, everyone!

I have not been able to participate in forum discussions a whole lot or respond to direct messages. This is not due to any health-related issues or negative events; in fact, I’m living my best life and happier than ever! I’ve been lucky to be involved with some amazing opportunities and new responsibilities. Two years ago, back when I was sure my life was over, I would’ve never pictured being this content. I even managed to overcome a few losses and some hardships this year without breaking down as I surely would have in the past. This year has been filled with professional endeavors, personal growth and experiences, heartbreak, travel and adventures, stress, elation, laughter, tears, etc. And I'm embracing it all. Life feels precious and beautiful.

I want to reiterate: as Steve Ozanich says, when you’re having symptoms, don’t panic - ask yourself why your body feels the need to experience them. Don’t worry about how long it took this person to heal, if that person had flare ups, etc. You are an individual, and it all boils down to understanding what’s actually happening, relaxing yourself, believing you are safe, and moving on with life. It really is that simple. It’s certainly okay to receive support from loved ones, therapists, doctors, and members on this board, but remember that it’s ultimately up to you to get to that peaceful place. And everybody can! Yes, that does indeed include you.

When going through this journey, I always advise people to work with doctors who understand the mind-body connection. They don’t have to be “TMS” or Sarno experts, but they should recognize how the mind affects the body. This will allow you to trust your medical team to distinguish the structural from the psychological (and be able to spot a blend of both - e.g., pain from true nerve damage worsened by emotional stress).

With regard to overcoming your symptoms, there are multiple points of consideration I'd like to elaborate on:

REASSURANCE SEEKING​

At the end of the day, reassurance seeking and becoming reliant on reassurance from others will only perpetuate the cycle of symptoms. I understand this more than anybody else - my mother and doctors had to be direct with me when I was experiencing my issues a few years ago. I now realize I made the mistake of enabling reassurance seeking patterns with numerous forum members who wanted advice from me. I didn’t encourage people enough to break that cycle. I still believe in you all and always will, and you’ve got to believe in yourself, too! It’s all about healthily balancing and managing your life. Those are my keys to healing. What is it about the way you view and handle life that is stressing your body out so badly? How can you change your perception of life and develop positive strategies for living your best life yet?

My mom and I recently had a situation where someone close to us was constantly seeking reassurance. It was eye opening for us to see how indulging individual's reassurance seeking patterns impacted their ability to move on. I want to support everyone as much as I possibly can, but I also need to not disrupt one fostering their own independence!

I am so incredibly sorry that I have been unable to answer every question and direct message. I wish I could respond to everyone, but it’s not feasible for me anymore, and I want to be careful about enabling reassurance seeking and dependency. It’s not beneficial to you. Here is a great Reddit post on how reassurance seeking further creates anxiety (note: this is not my post, nor do I have a Reddit account, so I cannot take credit for any part of the conversation). Plus, private messaging does not allow for others to benefit from the insight shared. With that said...

THE MIND-BODY CONNECTION: A HUMAN EXPERIENCE​

For everyone asking me how I’ve healed, this entire thread explains how I did it. For those who have requested my opinion regarding whether your symptoms are caused by the mind-body connection, unless you have an issue like a broken bone or cystic fibrosis, the answer is yes. And even then, the mind-body connection can make wounds heal much slower and cystic fibrosis patients die way faster (remember how Bobbi Campbell talked about seeing this with cancer and AIDS patients). Also, if you continue to experience foot pain after your broken foot heals, you’d better believe it’s the mind-body connection! The symptoms you are experiencing are normal and an extremely human response to an increasingly stressful world our more primitive ancestors didn’t live in. Steve Ozanich is correct when he says there are very few permanent and unchangeable conditions.

Please understand that flare-ups are normal. As I always say, the mind and the body are deeply connected, and everybody experiences mind-body symptoms - whether it’s an eye twitch when you’re angry, blushing when you’re embarrassed, CRPS after a traumatic event, depression after a divorce, etc. I had some pains earlier this year after significant stress, but I asked myself why my body felt the need to experience symptoms, ensured I was managing my emotions in an appropriate manner, and then went back to living life. And I’m feeling FAB! This is why I am super careful about people saying, “I have TMS.” You don’t have TMS like someone has strep throat. Again, the only thing you have is a normal bodily response to emotions. For some people, the response is minor (blushing when embarrassed); for others, it’s more severe (CRPS).

CHANGING YOUR LIFE​

I will quote myself: do not forget neuroplasticity and how the brain changes throughout your entire life. Beautiful new neural connections are forming every day. Your management and perception of life can change. Think about how much freedom you have to start the process of changing your entire life today - physically, mentally, and emotionally! You are not stuck in this place forever.

Neuroplasticity and changing your life takes time. You have to be determined and put in effort to create the new habits and behaviors. This is not an overnight process. Maybe cognitive behavioral therapy will get you there. Perhaps visualization and meditation. You have to do what works for you.

TAKING IT PERSONALLY​

In addition to commonly discussed traits like perfectionism, another trend I’ve noticed is that many people who are suffering continue to internalize their interactions and experiences with others. If you can relate, it’s important to work on being overly sensitive; clearly communicate your thoughts to others so you can properly avoid “blowing up,” spiraling, and/or becoming a doormat; and move forward without letting negativity dominate your entire reality. As one recent and less dire example, I recently had a friend vocalize some rude thoughts to me, and I could’ve gone on for days about how they “wronged” me. Everyone would’ve agreed with me and been on my side. But I asked myself if I wanted to drain myself of energy. I took a deep breath, told the friend in a reasonable manner why I disagreed with them, and moved on regardless of their response to me. I had to prevent myself from letting it own me and weigh me down, and I needed to accept whatever happened next. I wasn’t able to consistently let go in the past.

You must avoid being a victim in everything that happens to you in life - both in the past and present. We have to learn how to not utterly shatter and break in a world that isn’t ever going to be 100% fair. You can’t help make the world a better place if you're easily broken. I am much more than a queer person who was born into some chaos and had some pretty horrific things happen to me and my family. It really is true that you can’t control the world, but you can control your response to it. When it comes to horrific events, nobody can tell you to just "get over it." You may never forget it. In addition, we all get angry or upset from time to time, and that's normal and can be healthy if managed well. However, it’s all about how you choose to handle the situation and let it affect your perception of life. Become a survivor who finds a way to overcome anything. Never let anything or anyone else define you. Love yourself. Be a bad ass!

Classic:

FINAL THOUGHTS​

I’m not perfect, an expert, a doctor, a health coach, a counselor, etc. I’m just a regular person who experienced symptoms due to powerful emotions and not managing my life in a healthy manner. You are going to be okay, I promise. ❤️

 

This post is the most beautiful distillation of healing anyone here can read. I appreciate that it holds both the advice a newbie to TMS needs and the wisdom that many veterans miss or sometimes forget. I had to step away from the overwhelming appeals for help and insight, and that bothered me at times, but popping in here today I am greatly heartened by reading this. I’d urge anyone suffering to print this out and meditate upon it daily.

Much love to you all xxx

 

Dorado has gone the whole course and come out the other side with a very clear vision of what it takes to really just let go of this syndrome we call TMS. Pay attention, read her post, then, . . . .read it again. I too have had to learn to 'step away' from my fears and labels . TMS be damned. I'm living and moving on with joy.
Kindly
Lainey

PS So good to see a post from Plum. ..Glad you are doing well.

 

Great post. I to am having to learn that you can't obsess over TMS. It can become a heck of a rabbit hole if you don't watch yourself. Those of us who have perfectionist tendencies are prone to try and learn EVERYTHING and do EVERYTHING. I catch myself on this forum for hours at a time and I know that's not good. So I've started limiting myself to one success story everyday. I do my journaling once or twice a week and try to meditate everyday, but I don't beat myself up if I don't reach those goals. Like you said, I'm now trying to focus on living my life, not healing myself from TMS.

 

Wow! I couldn't be more stoked to have stumbled upon this thread. Dorado's and Hillbilly's testimonials have resonated with me more than anything yet. My brain, although willing to accept the idea of TMS, has been trying to scream at me for the last week saying, "You're still missing something dude!"

Thanks Dorado, for being so candid and thorough in sharing your story. The rational side of my brain is finally connecting some very important dots and is breathing a major sigh of relief after realizing that there's a path forward that doesn't involve such a rigid, dogmatic, "one size fits all" approach. And most importantly, that I'm not repressing my unconscious mind for thinking that!

I think the blessing and curse of TMS believers is that we, to one degree or another, are impressionable. Whether it's the initial Dr. Google game we all play, the inherent belief in our doctors and their diagnoses/prognoses, or the eventual things we read on this forum, we consistently and dangerously soak up too much of the information we're receiving and continue to believe that the magic potion is going to come from someone or somewhere else. Hell, I'm even doing that a little right now after reading this thread!

I'm still going through my journey, but I truly believe that the first step forward comes through recognizing that it is ourselves, as individuals, that hold all the power to overcoming our situation in our very own, unique way. And to me, that is truly what's empowering.

I'll always continue the quest for knowledge, but I really want to unplug from this endless obsessiveness, which has been hyper-focused on my pain for so long and is now ironically being consumed by this idea of TMS! Time to start living life and stop the constant fear of pain or whether I'm following some treatment protocol 100% correctly. I'll be back when I'm ready to write my success story!

 

Thank you for ALL of this!! It’s very powerful and selfless to share your story of recovery for those of us still floundering. I really appreciate it. I know you know that

 

@Dorado
I know that you may not get on here often, but in hopes that you do, I wanted to reach out to you. Your story resonates with me as I have many of your symptoms. I had a traumatic pregnancy loss in 2016 and ever since then I have been Having problems. I have been told I likely have an autoimmune disorder - Sjogrens- Testing thus far has been negative but apparently it doesn’t have to be positive to have this. I started having dry eyes a year ago and my mouth started becoming dry recently. I also have facial nerve pain, trigeminal neuralgia, tender muscles, among other things. I’ve Been hypersensitive since I was a child and It’s totally out of my comfort zone to reach out on a forum, but I am losing hope. Dry eyes and mouth seem so permanent. Part of me wants to believe I can fully get better, but the other part thinks maybe I should face reality and move on from thinking I will get better and start coping with symptoms. Just looking for some thoughts and maybe some hope. Thank you so much

 

Hi, @Annaclaire201! I always have to throw a disclaimer out there - I can’t diagnose anyone or say for sure why someone is experiencing symptoms. I always have to remind people that it’s important to work with a doctor to ensure nothing else is going on. It sounds like you’ve been doing just that, which is good.

I am so incredibly sorry about the trauma you’ve endured. The fact that you developed symptoms afterward indicates that there definitely could be an emotional component to what you’re experiencing. I always tell people that if you feel like you’ve been experiencing strong emotions and/or have certain personality traits (e.g., perfectionism, goodism, etc.), then you must remember that the body may experience that emotional stress physically, too. Even if somebody does indeed have a structural condition, then following the right treatment PLUS doing some emotional work can help, as emotions can absolutely make structural conditions worse.

Your symptoms can occur in individuals who don’t have an autoimmune disease or structural condition, and you can see that many of us on here have experienced them. Again, I am so sorry about what you’ve gone through - that emotional pain would be enough to make anyone experience physical symptoms. My advice truly is all in this thread. I hope you feel better soon. Please do not lose hope. ❤️

 

@Dorado thank you so much!

 

@Annaclaire201, I should also say that I do think it’d be beneficial for you to stick around and do some of the mind-body work, especially given the timing around your symptoms. Even if you had been diagnosed with an autoimmune disorder, the mind component of the mind-body connection is very strong.

 

@Dorado yes, you’re right. You’re story is inspiration to me and I know to many others as well. It really provides hope for me. Thank you so much.

 

@Annaclaire201, there is definitely hope for you! All the ideas I’ve written about in this thread apply to you, too. Focus on what you love in life, managing emotions, and getting back to fully living a life you enjoy. The trauma you felt is understandable - give yourself some room for acceptance. That means acceptance of your feelings and acceptance that you are going to be okay.

 

Dorado your posts are so intelligent and comforting. Unfortunately I’m still at the ‘comparison’ stage. I’ve been looking for a success story from someone who had my exact symptoms and I know that isn’t always possible. For such a long time I’ve had prickly leg skin and erratic feelings of intense anxiety. After more medical tests than I can recall, including visits to 3 neurologists, MRI’s, bloodwork, and on and on I was told that not a single problem could be found. I am healthy. My issue is I am haunted by the fact a skin/nerve biopsy was never done and since I am in Canada I can’t really just go get one done. The book has been closed on my symptoms so to speak. Just the thought of possibly having a nerve problem sends me over the edge.

Reading your posts does give me hope. Thank you Dorado.

 

JanAtheCPA thank you so much for taking the time to respond. Your post makes so much sense and believe me I’ll read it over a few times.

 

Hello everyone. I found this thread very informative and i believe i can get the best advice from here. Please listen to my story and open to suggestions.
I believe i started getting depress and emotional suppression in 2016. I felt i am suffering from porn induce ED. I started spending 5-6 hours daily on internet. I was very hard on myself, keep checking erections every morning. I can say i was always thinking of progress. 5-6 months after that i got balanitis and big hives on my body. Once again i started spending my whole day on internet for months. Now its 2018 summer i had a protected hookup and very next day i felt little down and started getting goosebumps even with minor temp change. Here we go again anxiety kicks in and i am on the internet again for months. In between i was sitting in a office and suddenly i felt my whole face was getting tight like you feel after face mask dry out and i got feeling of lump in throat. I did search and figure it out it is classic symptom of anxiety so i did not think of it much and it went away in few days. Fast forward in 2019 January i got hair transplant which was very painful and right after that i decided to quit job and buy business.It was very stressfully to arrange the finances. After hair transplant i took finasteride for couple of weeks for hair loss but then i got all of the following symptoms and i stop medication. I strongly believe below mention symptoms cant be from medication because whole world take this for baldness or enlarged prostate.Here is the list of major physical symptoms

• heavy head and brain zaps (never on anti-depressants)
• tight feeling on left side of face came back but somedays it goes away or move to right side of face
• After few weeks i got tinnitus in left side
• Then i started getting burning and little numbness feeling in my hands and feet. Everyday when i used to wake up burning sensation used to go away from old location to new one.
• Nerve Pulsating feeling in whole body. If i make a fist i can feel strong pulsation or i can feel it when i am resting.
• Muscle twitching all over the body
• Euthiscian tube dysfunction after ear infection. Ear drop pop up every time i burp.
• Currently if use my right hand too much it started feeling nerve irritation and if i still keep on forcing i will start getting electric sensation
• Buzzing and tingling sensation in both hands
• Pain and burning sensation keep moving between right and left feet sole.
• When i wake up in morning my body is tight and if i stretch i start getting muscle twitch in random places
• Hands and legs fall numb quickly if i sit in odd position even for short time

Whenever i start believing in TMS some new symptoms pop up and i fall back to internet and anxiety. So far i have seen many General practitioners and none of them have found any thing including stds. I have also seen 5 neurologists with 2 NCV, brain MRI and cervical mri and blood test. Everything was normal including lyme test. I am lost i dont know where to go from here, i am keep on getting depress because my symptoms keep on increasing without any explaination.

 

@tgirl, the wonderful advice provided by @JanAtheCPA is spot on! I 100% agree with everything she said, and also believe that approach is what helped me heal! I could not have articulated it better.

Regarding the small nerve biopsy, let me tell you something - I went to Mayo Clinic. They did not want to perform a biopsy on me, and neither did neurologists at Northwestern or University of Chicago.

I saw the best of the best. There is nobody better than the neurologists I saw, and the neurologist from Northwestern told me that he was seriously concerned about the fact that I wouldn't even accept advice from true world-renowned experts, but would sit on forums, WebMD, Google, etc. all day. All of the neurologists agreed that other tests were more valuable, as nerve biopsies aren't perfect or always necessary for every patient. I ended up basically forcing U of C to perform two nerve biopsies through serious begging, yet it still wasn't enough for me in the end - I started to wonder whether I had patchy neuropathy and they just missed a spot?! So I don't think the biopsy will help you as much as you think. For me, it was just another obsession and distraction.

You passed the tests your neurologists performed. I've got three world-class hospitals that agreed the nerve biopsy isn't necessary for cases like yours or mine. Please don't get hung up on the biopsy - I wasted so much time doing this! The neurologist at Mayo and Northwestern strongly urged me to seek help because of how I couldn't be convinced by anything. I was angry with them and thought they were missing something, but the reality was that I was the one missing something.

What will help you is JanAtheCPA's approach detailed above. I truly believe you will be posting your success story in the future.

 

@Hopefulfuture, I also agree with the advice provided by @JanAtheCPA - my recommendations are all the same! You've passed the necessary tests performed by multiple doctors and have a history of anxiety. TMS work absolutely applies to your situation; I believe your anxiety is the answer to your question regarding increasing symptoms and where they're coming from.

Because this type of ear symptom doesn't get talked about too much, and as someone who has also questioned whether I had long-term side effects from medications, I would like to note that I had the same dysfunctional ear problems after discontinuing Cymbalta. When it didn't go away months later, I was convinced it must be a structural issue since it had a legitimate cause (antidepressant withdrawal). However, it went away when I finally believed that I had healed long ago, but continued to experience symptoms due to emotional stress.

That said (and this might help you as well, @tgirl), as JanAtheCPA already recommended in previous comments within this thread, don't get too hung up on the symptoms other people experience - regardless of how many individuals have or don't have the same exact symptoms as you, it doesn't change the fact that your emotions are indeed causing them.

Another way to illustrate the importance of not getting caught up in the symptoms other people experience is an interaction I had with my dermatologist regarding Ehlers-Danlos, a connective tissue disorder I was born with. I told him my mother - who has the same disorder - also has very stretchy skin like me, but her skin doesn't immediately bounce back in place like mine and is much more sensitive, weak, and slow to heal. Given some issues it's given her with healing, it concerned me. He told me to stop thinking about my mother's disease expression because no two people are alike, and can have the same connective tissue disease but different experiences. That's why a 26-year-old model with Ehlers-Danlos has skin literally hanging from her body, but my skin is almost too durable and makes me look too young.

So stay on track with the TMS work and success stories, but don't feel isolated because someone's experience may vary from yours. The source is all the same: Emotions!