Conversion disorder/CD, PNES, FND

Hello, thank you for taking the time to read my story. I have been ill with conversion disorder for over a decade. My longest seizure was three days straight, and the most I have had in a day has been about 50. All in all, I have fallen about 30,000 times and about half of that has been through seizures. I will list my many symptoms below.

Stuttering
Blindness and blurry vision
Temporary Paralysis
Seizures
Vertigo- made me knock into walls, fall down stairs...
Falls
Loss of motor control
Spasms
Muscles locking up spasms
Loss of voice
Loss of hearing
Fatigue- lifting a bottle of milk was difficult to impossible some days.
Chronic pain- the pain would be so bad I would crumble to the floor.

and much much more.

I had a very severe form of CD/PNES/FND.

I have been using the Sarno process for over a year and went to 1 seizure in 3 months. That is recent. I plan to update more as my progress continues. I now can lift a box with 15 beer bottles in them, carry a heavy generator and more.

If you have any questions, please feel free to ask.

All the blessings of health to you and your loved ones.
Sincerely,
Me

 

What an incredible story! Thank you for sharing! To go from not being able to lift a bottle of milk and having many seizures to living life to the fullest again is so inspirational.

Regarding messages, I do recommend responding to questions in this thread or other posters’ threads, as direct messaging can eventually turn into a significant volume of messages and become difficult to manage (I’ve been there). You also run into the issue of reassurance seeking and dependency, which can stall growth and the healing process. Another concern is liability, where people start to rely on you as almost a doctor and/or psychologist/personal coach, wanting to confirm that every newly experienced symptom is TMS when I am not qualified to do so. Additionally, other posters won’t be able to benefit from the insight. But that is your call. Just be aware.

 

Thanks for your story @Curing My CD ! And I agree 100% with Dorado. My policy is NO private help, for the following reasons:

1. I am a tax accountant, not a qualified TMS professional. If I offer advice to a peer, I depend upon others seeing it and adding their own experiences and differing viewpoints.

2. I want other community members to benefit from the public discussion. It is a community effort, and we are all in this together.

3. As Dorado said, personal/private advice often ends up being a big sucking black hole. People who want to recover from TMS need to take emotional risks. The first one of those is to be vulnerable. I believe that if they aren't ready to be vulnerable on an anonymous public forum, then they need to pay for professional therapy or coaching, because their issues are beyond my amateur ability to help. Providing advice publicly always prompts me to re-read what I write, think about how it sounds, and make sure that I am being as supportive as possible, while also being realistic for the needs of that person.

Dorado and I both learned these lessons by experience, and we aren't alone!

I really hope you will stick around and contribute the benefit of your TMS healing to the community, because I'm sure you have a lot to offer.

~Jan

 

Wow, thanks for the inspiring story. I’m just wondering were you aware you had conversion disorder in the past or did you feel you were actually physically ill?

 

@Dorado and @JanAtheCPA

I couldn’t agree more. I even stated this on my profile yet people would still pm me. It’s been a major factor in why I would take my leave so often in the past.

To see you both speak about this represents a much needed evolution for the forum and I welcome it.

It’s lovely to hear from people and exchange thoughts sometimes, but the oppressive weight and expectation that you can work magic for someone else is a different kettle of fish entirely. On the plus side those experiences taught me a lot about my co-dependant tendencies and helped me understand that only I can tend to and am responsible for my own needs. Endlessly pandering to others while neglecting yourself is high octane TMS behaviour and desperately needs unthreading from any sense of passing it forward and helping others from a healthy, grounded place.

@Curing My CD

Well done for your impressive healing. Please do continue to post here and share your experiences. ❤️

I hope this discussion doesn’t sink your spirits because that impulse to reach others is a beautiful one. I guess for the old timers here it urges us to reflect and then share our cautions. Emotional quicksand is a horrible place to find yourself and many of us do venture there at some point. It’s much better (safer, healthier) to hold up a lantern for fellow travellers and show them the way (including pitfalls), then to repeatedly jump into the mire yourself.

Blessings,

Plum xxx

 

Thank you all.
The reason i asked for PM is because I am super private and am not comfortable answering some questions. But i will edit my previous post. I respect your experience.

It took years to get a diagnosis and i felt physically ill.

 

I see that i cannot edit my post. Please write here with questions. And, if i see that i feel too private to answer publicly, i will be in tpuch or let you know

 

Ah, I get it. I understand that people are likely going to ask you detailed questions about your own symptoms. But you don't have to answer! I'm really serious about this. Giving them intimate symptom details just feeds their desperate attempts to find someone who has had their exact combination of symptoms, but since that's not possible, they will never be satisfied, and their fearful brains will keep them stuck while you get burned out, at best.

The BEST way to help them is to refer to what you already posted without going into any intimate details, and let them know that in order to heal, they need to accept that the details do not matter. Then, concentrate on how "the Sarno process" might apply to them. In many cases, you'll find that they don't know anything about Dr. Sarno, so your work is done until they do the basics.

 

I want my journey here to reflect my actual journey in real life, but I am only able to give bits and pieces at the moment while staying in integrity with myself. With that said, I plan to check in on here once in a while and try to answer what I can publicly, whether I get the question in a PM or not. I will not post the question or username but just give information over.

 

I believe that conversion disorder has another purpose besides a distraction from emotional pain. I believe that in my case it has also been a vital expression of emotional pain. This is different than TMS which only serves to distract. As Sarno says, CD is psychogenic and has the same psychology as psychosomatic, but he also doesn't have much experience with it. My own intuition and release I got from my PNES tell me that it is also an expression of pain in and of itself besides the distraction it is serving at the same time.

 

I am wondering did you see seek counselling or just read and use Sarno’s method? Be well.

 

I sought counseling for years. I am still in therapy. I think CD is a very intense form of distraction. For me, my psychological history case is complicated.

 

Do you feel your ongoing recovery is mainly from reading a TMS book or a combination of things, including your counselling? I’m so happy for you, recovering from such extreme symptoms. It does give hope to others experiencing symptoms that linger. As I’m sure you’re aware it can be quite demoralizing.

 

I am sorry it has taken me so long to reply. Counseling is a big part for me to recover repressed memories. I have CPTSD in addition to CD. I believe that I have a lot more repressed memories that are seeking expression, empathy, and understanding and that is why I still have where to progress.

I have also spoken with two people IRL, one who overcame sciatica and another who overcame FMS and they both had the same issue that they weren't progressing in healing after a certain point. They both did things that help with mild oxygen deprivation, one did a juicing program and another did coherence breathing. The coherence breathing needs to be done for 20 straight minutes. That is my goal to get to. I hope that by doing it my body will receive better oxygen and my healing will kick up

 

Congratulations! What an impressive victory!

 

Thank you so much! That means a lot