Sufferer New Here: CPTSD Diagnosis for two years after over a decade of misdiagnosis. Looks like a long road ahead.

Cheesewiz

New Here
Hello Everyone!

Who am I?
Well, my values, likes and dislikes are still in flux :) I grew up walking on eggshells and have only had the opportunity to explore who I am and what I am about in the last 5 years or so.

Background:

I'm a younger person, in my 20s. I've been in and out of therapy since I was 16, and on assorted psych meds, depending on the diagnosis at the time.

I was first mandated therapy as a teen due to repeated self harm and suicidal thoughts. At that time it was decided due to my inability to sleep, over spending of money, and emotional reactivity to stressful situations that the most likely diagnosis (dx) was Bipolar I. As a kid, this seemed to make sense to me, as I would "cycle" between crippling depression, and raging anger.

As a teen, I was aware that my home-life was not ideal. My parents were not involved, there was hoarding of items and pets in the house, and my mother was often lost in a fantasy where everything was perfect. It was not uncommon to hear from her friends that my mother and I had spent the weekend going shopping and hanging out, where the reality was she was spaced out in front of the TV, and I was desperately trying to stay ahead never ending list of cleaning that had to be done to keep the house semi-livable.

I kept the Bipolar Diagnosis for quite a few years. I had been working with the same therapist for about 8 years, and when I started with her, I was struggling with depressions, anxiety, and feeling like I was in a fog for the most part, even when on medication. The in the fog feeling was likely disassociation, but at the time was attributed to a side effect of the medication.

As I progressed with therapy with her, we explored other alternative or additional diagnoses, since Bipolar alone did not seem to cover everything. Since I really struggled with connecting with people (how to properly emote in response to things, how to carry on conversations), how to maintain relationships, and boundaries in relations ships, alternative diagnosis like Borderline personality disorder, Autism Spectrum disorder were considered.

After some intense therapy sessions, and me growing the ability to have insight to what I was feeling and why, we more or less dissected the following general symptoms to their root cause:
Anxiety:
- A feeling of being unsafe at most times, unable to relax
- Fear of abandonment during discourse in relationships
Depression:
- General hopelessness about life
- Inability to enjoy or relax during hobbies / "fun" activates
Inability to connect with others:
- Not having emotional drives behind interests (a fun example, Should pineapple go on pizza? I have no strong reaction either way, how do I continue a conversation when there is no emotional drive behind what I am saying?)
- Persistent feelings of numbness which makes meeting new people, communicating difficult.
- Feeling like I am too different from others, an outsider in most groups
- Abandonment issues which makes keeping people at arms length easier
- Hyper-Independence, I feel very awkward asking for help or an ear to vent to.
Bouts of Rage
- Emotional dysregulation, usually due to a trigger
- Catastrophizing issues (ie, late for an appointment > they think I'm irresponsible, rude ect > I should feel bad > I'm angry at myself)
Physical issues
- Pain, due to being on edge / tense most of the time.

After decomposing some general complaints into specific items, my therapist suggested C-PTSD as an alternative to Bipolar. Since I never had what would be considered a "true" manic episode, and most mild mania symptoms could be explained with PTSD or C-PTSD symptoms, it was decided with my care providers to wean the Anti Psychotics and Lithium to see what would happen. When it was found that there was no notable change in my mood or mood stability, a shift in medication and therapy was made to focus on the symptoms related to C-PTSD.

I read The Body Keeps Score, and C-PTSD from Surviving to Thriving, and felt at times like I was reading an auto-biography of my mental health.

In some ways, it was liberating to have the C-PTSD diagnosis, there was hope for treatment without lifelong medication or therapy. It was something I could eventually cross the finish line in treatment. However, I struggled with grief at times, feeling like my upbringing had robbed me of a childhood, and ruminating on the "What - Ifs", what if things went better as a kid? What things would I have not missed out on as a teen or young adult? What struggles would I have not had to face?

Currently I am working with a relationship consoler, as I really struggle with my symptoms while in a relationship. In addition, I am working through EMDR, which is really hard for me. Being constantly asked how I am feeling in a session is difficult, as I often cannot specify an emotion besides "nothing". I'm not sure if its me just suppressing feelings as a coping mechanism, or if I truly have no emotions attached to things.

What am I hoping to get out of this site?
- A place to discuss my struggles with C-PTSD, its symptoms, navigating life with it, and struggles in therapy
- Resources, I've found books on the topic help me be prepared for therapy, and sometimes give insites I need to push through a wall in my therapy

Thanks for reading :)
 
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Friday

Moderator
Welcome to the community!


Putting on my ModHat for a moment 🤠

I’ve removed your content warning, as we don’t use trigger warnings on this site, for pretty much my favorite reason, ever …bolded at the end.

MyPTSD does not use trigger warnings. Mind reading what could be a trigger for another is a negative thinking style, a problem all PTSD sufferers need to correct at some level. Whilst some view its use as a courtesy, it is impossible to know what will, or will not, trigger another person, regardless the graphic detail contained. After all, this is a space where those affected can discuss trauma and its consequences.

Again, welcome!
 

arfie

MyPTSD Pro
welcome to the forum, cheesewiz. i started psychotherapy about twenty years before the first pro articles on ptsd were published within the veteran's administration in 1992. the diagnosis, "manic depression" was the best guess available for my condition in 1972. manic depression morphed into bipolar somewhere in the 80's. my best guess for that evolution is that medical doctors didn't like competing with the likes of me, winston churchill and stephen spielberg. in the middle 90's, i was a shoe-in for re-diagnosis to ptsd. by then, my healing had progressed far enough that the redo felt a bit pointless. i still use nearly all of the therapy tools i learned in bipolar therapy. they work when i work them.

What am I hoping to get out of this site?
- A place to discuss my struggles with C-PTSD, its symptoms, navigating life with it, and struggles in therapy
- Resources, I've found books on the topic help me be prepared for therapy, and sometimes give insites I need to push through a wall in my therapy

that is a very realistic expectation from this site. steadying support while you learn how to use those available resources.

attempted humor warning
i love cheese whiz so much that i am almost offended that you misspelled the name. almost. i also love phun with funetix.
 

ladee

MyPTSD Pro
Welcome to the forum. A wonderful introduction!!! Take your time and read around the forum and see what all goes on here. We even have fun and laugh. Those are much needed threads.

Hope you receive the support you need and start to feel 'at home' here.
 

BigLittle

Confident
Hej and welcome to the forum!

You're intro sounds oh so familiar to me. Glad that you've found this forum and also that you are reaching out to others.

It's a welcome feeling to know there are others with a similiar story of being misdiagnosed even though it's a hell of a ride to get C-PTSD. 😀

Hope you find the support and knowledge to help you.
 

ninecatlives

New Here
Hello Everyone!

Who am I?
Well, my values, likes and dislikes are still in flux :) I grew up walking on eggshells and have only had the opportunity to explore who I am and what I am about in the last 5 years or so.

Background:

I'm a younger person, in my 20s. I've been in and out of therapy since I was 16, and on assorted psych meds, depending on the diagnosis at the time.

I was first mandated therapy as a teen due to repeated self harm and suicidal thoughts. At that time it was decided due to my inability to sleep, over spending of money, and emotional reactivity to stressful situations that the most likely diagnosis (dx) was Bipolar I. As a kid, this seemed to make sense to me, as I would "cycle" between crippling depression, and raging anger.

As a teen, I was aware that my home-life was not ideal. My parents were not involved, there was hoarding of items and pets in the house, and my mother was often lost in a fantasy where everything was perfect. It was not uncommon to hear from her friends that my mother and I had spent the weekend going shopping and hanging out, where the reality was she was spaced out in front of the TV, and I was desperately trying to stay ahead never ending list of cleaning that had to be done to keep the house semi-livable.

I kept the Bipolar Diagnosis for quite a few years. I had been working with the same therapist for about 8 years, and when I started with her, I was struggling with depressions, anxiety, and feeling like I was in a fog for the most part, even when on medication. The in the fog feeling was likely disassociation, but at the time was attributed to a side effect of the medication.

As I progressed with therapy with her, we explored other alternative or additional diagnoses, since Bipolar alone did not seem to cover everything. Since I really struggled with connecting with people (how to properly emote in response to things, how to carry on conversations), how to maintain relationships, and boundaries in relations ships, alternative diagnosis like Borderline personality disorder, Autism Spectrum disorder were considered.

After some intense therapy sessions, and me growing the ability to have insight to what I was feeling and why, we more or less dissected the following general symptoms to their root cause:
Anxiety:
- A feeling of being unsafe at most times, unable to relax
- Fear of abandonment during discourse in relationships
Depression:
- General hopelessness about life
- Inability to enjoy or relax during hobbies / "fun" activates
Inability to connect with others:
- Not having emotional drives behind interests (a fun example, Should pineapple go on pizza? I have no strong reaction either way, how do I continue a conversation when there is no emotional drive behind what I am saying?)
- Persistent feelings of numbness which makes meeting new people, communicating difficult.
- Feeling like I am too different from others, an outsider in most groups
- Abandonment issues which makes keeping people at arms length easier
- Hyper-Independence, I feel very awkward asking for help or an ear to vent to.
Bouts of Rage
- Emotional dysregulation, usually due to a trigger
- Catastrophizing issues (ie, late for an appointment > they think I'm irresponsible, rude ect > I should feel bad > I'm angry at myself)
Physical issues
- Pain, due to being on edge / tense most of the time.

After decomposing some general complaints into specific items, my therapist suggested C-PTSD as an alternative to Bipolar. Since I never had what would be considered a "true" manic episode, and most mild mania symptoms could be explained with PTSD or C-PTSD symptoms, it was decided with my care providers to wean the Anti Psychotics and Lithium to see what would happen. When it was found that there was no notable change in my mood or mood stability, a shift in medication and therapy was made to focus on the symptoms related to C-PTSD.

I read The Body Keeps Score, and C-PTSD from Surviving to Thriving, and felt at times like I was reading an auto-biography of my mental health.

In some ways, it was liberating to have the C-PTSD diagnosis, there was hope for treatment without lifelong medication or therapy. It was something I could eventually cross the finish line in treatment. However, I struggled with grief at times, feeling like my upbringing had robbed me of a childhood, and ruminating on the "What - Ifs", what if things went better as a kid? What things would I have not missed out on as a teen or young adult? What struggles would I have not had to face?

Currently I am working with a relationship consoler, as I really struggle with my symptoms while in a relationship. In addition, I am working through EMDR, which is really hard for me. Being constantly asked how I am feeling in a session is difficult, as I often cannot specify an emotion besides "nothing". I'm not sure if its me just suppressing feelings as a coping mechanism, or if I truly have no emotions attached to things.

What am I hoping to get out of this site?
- A place to discuss my struggles with C-PTSD, its symptoms, navigating life with it, and struggles in therapy
- Resources, I've found books on the topic help me be prepared for therapy, and sometimes give insites I need to push through a wall in my therapy

Thanks for reading :)

Cheesewiz, consider yourself fortunate for the early diagnostic. The road is long, but recovery is possible! I had a very late in life diagnostic and the grief is so much greater, as the number of opportunities missed or misused is that much more. You will get there, you seem to be on the right path!
 
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