After a lifetime of health challenges, finally feeling hopeful!

Hey everyone!

I just wanted to introduce myself. I'm a writer and musician living in Berlin who has been unable to work or continue my graduate studies during the past 3 years due to severely disabling symptoms. I finally have hope that months down the line (or even sooner!) I'll be able to update you with my own success story.

I've struggled with mental and physical health for my whole life. After starting the Curable program, I finally feel like I have some understanding and hope of my confusing and disabling symptoms, and why so many medical interventions have just made things worse. I would appreciate any thoughts, encouragement, or resources you'd like to send my way!

Here's a little summary of the diagnoses I've received over the years.

Childhood: Asthma, Anxiety
Teen Years: Panic Disorder, Major Depression, TMJ (botched splint treatment led to invasive jaw surgery), Fibromyalgia
College: GERD/IBS, Chronic Wrist Tendonitis
Post-College: Steroid-Induced Adrenal Insufficiency (caused by over-aggressive asthma treatment, now in remission), Chronic Fatigue Syndrome, Agoraphobia, Chronic Ankle Tendonitis, Tension Headaches

And the long version:

As described in the TMS resources I've checked out, I definitely fit the personality of the perfectionist and goodist, having been raised in a very strictly religious family. Excelling in school and the arts were one of my few sources of pride over the years.

Despite the many symptoms I endured, I managed to (or rather forced myself) to maintain a pretty functional life (work, school, relationships) until 3 years ago, when a hidden mold infestation (likely in combination with TMS) led to a severe asthma exacerbation. Over months, this exacerbation was treated unsuccessfully with high steroid doses, and it didn't improve until I moved into a different place.

Unfortunately, by that time, I was unable to wean off the steroids and it was determined that I had developed Secondary Adrenal Insufficiency (a scary diagnosis in which your adrenals cease producing their own natural steroids to sustain life, which scared me even more when imaging showed bilateral adrenal atrophy and I was told I may never recover). That started some really nighmarish months in which the doctors could not find any steroid regimen that would control my symptoms (which progressed from weakness and dizziness to extreme hot flashes, orthostatic intolerance, and becoming severely deconditioned and bedridden - unable to even feed or clean myself).

Since Adrenal Insufficiency was the only structural diagnosis I had received that could even vaguely explain my symptoms, no matter how tenuous, doctors continually increased my steroid doses until I was on insane amounts and only getting worse. I was convinced I was constantly on the brink of adrenal crisis (a life-threatening even that occurs when you don't have enough steroids in your system to support life), despite taking well over normal daily dosages. Finally during one hospitalization, I found a doctor who had the sense to start tapering my steroids and pointed out that anxiety and deconditioning was certainly a big factor in my problems. That was the turning point.

From then, it took a year of rehabilitation through slow weaning off steroids, physical therapy, psychotherapy to get me out of bed into a wheelchair, then from wheelchair to cane, and finally walking again. And finally, my adrenals regenerated enough to allow me to get off steroids for good.

At some point, I hit a plateau, where many of my symptoms including weakness, pain, heat intolerance, and "crash" symptoms after over-exertion have continued, long after I discontinued the steroids, leading me to get diagnosed with Chronic Fatigue Syndrome. I also developed agoraphobia (fear of leaving the house) due to so many traumatic experiences with my symptoms, and have never gotten back to work or my graduate degree.

A couple months ago, I spent a couple weeks hospitalized in a psychosomatic ward. While I now believe they were correct to hypothesize that I am suffering from "a single psychosomatic illness that has expressed itself in different ways" throughout my life, their program lacked the right ingredients to (1) convince me of the diagnosis, and (2) help me listen to my body and emotions, instead of perfectionistically pushing myself to recover. After retelling my trauma many times to one busy indifferent professional after another, feeling totally like a number, and straining agains immense symptoms to keep up in their group activities located all over the hospital, I suffered a major crash.

During this past crash, just a few weeks ago, I discovered Curable and the works of Dr. John Sarno, and I've been improving gradually since then! I already feel less fear and have been increasing my activity. I finally feel good about the future.

Anyways, thanks to anyone who slogged through that story. It feels good to write it out and know that this group is the type that will encourage my bravery and optimism, rather than reinforcing my fears.

 

Absolutely, big encouragement for your bravery and optimism. Well done, and thank you for sharing.

 

Great story, HLC! Keep us posted as you continue doing this work - it sounds like you've found the right place!

~Jan

 

Amazing story! You are proving that even our hormonal system can go out of whack because of TMS and that simple knowledge and faith in your ability can heal!

 

Hi HappyLittleClouds,

Congratulations that you have found your way out of the --deep-- weeds that you found yourself in. Your strength and insight shine through in your post!!

Your realization that you were pushing yourself to recover (which is natural!), and that this was not helpful is brilliant. Being perfectionistic or a people-pleaser in our TMS practices is just acting out our tension-causing personality on ourselves. It does not help... This is a powerful insight for you as you go forward...

We need persistence, patience, understanding, and strength. And a big dash of self-compassion!

We have free programs at the Wiki which we highly recommend. This is the Structured Education Program, and Alan Gordon's program listed at the top of the Forum page here. Your responses to these can be posted if you like. Feel free to reach out, check in with questions etc.

And good luck in your process. The distance you've already come ---finding this method (and its variations), trusting it, having some results, and personalizing it, so that you see yourself in it and begin to trust it ---are all huge. So take heart!

Here is a recent post with a summary of Dr. Alicia Batson's recovery steps, and a post I made awhile back discussing the wonderful progress when negative loops turn into positive loops in time.

http://www.tmswiki.org/forum/threads/the-17-steps-that-dr-batson-took-to-heal-her-chronic-pain.22237/ (The 17 steps that Dr Batson took to heal her chronic pain)

I suggest strongly that if one or more of these steps does not resonate with you, dismiss it wholeheartedly. You don't need all of these to recover, and some of these are harder to manifest for each of us, depending on where we find ourselves. This is a personal process and demands individuation/self-attunement.

https://www.tmswiki.org/forum/threads/ease-trust-success-and-positive-loops.19807/ (Ease, trust, success, and positive loops)

Andy

 

I have to make a correction there - Adrenal Insufficiency is a serious, profoundly structural disease. It is not TMS, but it was a result of it (consequence of harmful overly aggressive steroid treatments). I got healed of that by slow, gradual tapering of my steroid doses over the course of more than a year. Of course, TMS could be a factor in why I was susceptible to developing Adrenal Insufficiency, but it's not something you can spontaneously develop due to TMS. However it's a lesson in how misdiagnosis of TMS can lead to real harm.

 

Thanks for the great links! After I finish the Curable program, I think I will start Alan Gordon's program. It's so neat to have all these free resources available!

 

Hey everyone! I just wanted to post an update after almost a year since my original post. At that time, I had come back from a serious low point that kept me completely bedridden, but was still far from being able to return to work or school: I was plateaued in a cycle of fear and symptoms that made it extremely physically taxing to do the simplest everyday activities like walking from one room to another, doing the dishes, or even just watching a movie. My biggest psychological symptom was agoraphobia (anxiety and panic over leaving home, using public transport, etc.), while the major physical symptoms I experienced were all-over pain and stiffness, GI pain, food sensitivities, and major fatigue.

Even though this year has been extremely stressful due to the pandemic, it's also been an incredible year of healing for me, and I'd love to share that with you, as well as what I'm working on now. Looking back on where I was a year ago, the difference is amazing, but it was so gradual while it was happening that it was easy to overlook. I started my mind-body journey at the beginning of this year through the Curable app, as well as listening to lots of mind-body podcasts from Curable and Nicole Sachs. The most important building block for me was finally believing in my head that all my endless health struggles could all have a mind-body cause. Even though I didn't believe it in my heart (and still sometimes don't), that was the first step.

After seeing some progress just on my own, I started working remotely with Tim Norton, a psychologist from the Pain Psychology Center. Working with him helped me deepen my understanding of how my past, my current emotions, and my symptoms were connected. It also helped to have someone to keep me on track and remind me when I get stuck in a fear cycle.

Now, I feel physically almost back to the level of function I was at in 2016, before things went steeply downhill and I became seriously disabled to the point of being bedridden, then using a wheelchair for so long. From the perspective of 2016, that level of functioning didn't seem good at all--I had (and have) constant pain, GI issues, and fatigue. But I could live life. I was going to grad school, had a job and a social life. I could travel and do normal things, even though I did them with quite a lot of anxiety and depression, and never felt like I could keep up with other people my age. Then in 2017 that all changed, making everything that came before seem like a walk in the park.

Finally, after four long years unable to work or go to school, retreating totally from life to focus on my recovery, I'm starting to feel like life is possible again. I'm daring to dream again. I feel capable of accomplishing something in life.

Despite the symptoms I still have, here are some things I've done for the first time this year that I wasn't able to do in the past 4 years: stay in a hotel, take a train out of town, start gardening as a hobby, ride a bike, go on a short hike, work on the computer for longer than an hour, incorporate more foods into my diet, wean off acid blocking stomach meds, having multiple activities in my day.

While a year ago, a typical day would include painstakingly trying to walk up and down the street (if that) in the morning, meditating, sitting upright for a while on my patio, maybe doing a single chore, doing 10 minutes of stretching, and laying down in between each activity, many times per day. Even though I was not bedridden, I still spent a lot of time in bed. And my diet was extremely restricted: vegetarian, gluten free, lactose free, and low FODMAP. I was happy that I could at least feed, wash, and dress myself, but I was far from being able to pursue a normal life with work and school.

Now, a typical day includes taking a short walk or bike ride every morning (without feeling like I'm climbing a mountain), showering, working on the computer for a couple hours, cooking a healthy lunch, running an errand outdoors, taking a nap, making a healthy dinner, cleaning up, journaling, and relaxing with my partner. While I'm still in pain, I don't think of it all the time and it doesn't stop me from doing as many things. I have also reincorporated everything into my diet so I now eat whatever I want. I still get GI symptoms, but they are not correlated with what I eat, so I feel free to cook whatever I want.

Overall, I feel hopeful and empowered when looking back at the major changes that this mind-body work has made in my life. I still go through periods where new symptoms pop up, whether it's a new pain or a weird skin issue, and I can get stuck in a fear cycle again. Then when I notice what's happening, sometimes I panic that "it's all starting over again." However, these tools have helped so that these periods get shorter and come less often.

I hope someone reads this who is just starting their journey and feels encouraged that there's a light at the end of the tunnel!

 

Congratulations, I have no doubts that one day you will be completely pain-free! What an amazing achievement! Thank you for posting your story!

 

That was my "no time for a proper response" response, @HappyLittleClouds so here's what I really want to say:

1. I had a HUGE smile on my face by the time I finished reading your post. It made my day, seriously.

2. I would encourage you to copy your post and create a new thread on the Success Stories subforum, because people reading that forum need to see your story!

 

So thrilled for you! Well done!

 

Thanks so much for the kind words. I took your suggestion and created a post on the success stories forum so more people like me will be inspired.