It's Here! The Official Diagnosis For Complex Post Traumatic Stress Disorder

[nycpeach1]

Hi All,

FINALLY!!!!

I've been researching this for years to understand my own issues. The diagnosis is called "Diagnosis of Extreme Stress (Not Otherwise Specified) or DES(NOS) for short and is now listed in the DSM- V. There are many more emerging studies. I recommend looking up the work of Bessel van der Kolk- he is the preeminent doctor on the subject of trauma.

DES(NOS) is a form of PTSD, but there are distinct differences. PTSD is the result of an extremely traumatic event (tornado, violent crime, trauma experienced in war, etc...). DES(NOS) or Complex Post Traumatic Stress Disorder is the result of prolonged, regular abuse at the hands of a captor from which the victim can't get away (POW's, long term domestic violence, trafficked/prostituted women and children, concentration/work camps). Usually there is an additional history of trauma that took place during critical phases of development.

One marked difference is that while PTSD victims often have trouble recalling details of the event, those with Complex Post Traumatic Stress Disorder often suffer from amnesia with no recall of their trauma at all.

I don't remember two years of my life and for the longest time, I felt like a total freak. Even among other PTSD victims, I felt alone- why couldn't I remember anything? Flashbacks and night terrors are horrific enough; mine are the same gang rape over and over again. It's even more torturous to wonder if that actually happened or if it's an amalgam of many different incidences.

On a more practical level, it magnifies the shame I feel (justified or not). I don't bother dating because who wants to admit they have no clue how many sexual partners they have had? Besides, most people don't understand that trafficking happens here in America, within our own borders; that's if they understand trafficking at all. Can you imagine trying to figure out the "right" time to have that conversation? If you are suffering from amnesia of your trauma; you aren't alone and you ARE NOT crazy or weak.

We are all in this together and progress is happening- both PTSD and DES(NOS) are now recognized in the DSM-V. We are becoming less and less marginalized. It's up to us to stay informed and share what we know with each other. Who knows? You might just save someone else.

Warmly,

Sarah

 

[Chava]

This sounds hopeful. I'm already freaked out about seeing my GP doc and probably hiding burn scars on my arm because she'll want to slap some Paxil on the problem. I don't have generalized anxiety (or just depression) and none of the SSRIs or SNRIs worked well for me (they worked HORRIBLY). I only take little doses of pain meds and muscle relaxants. I'd probably love valium but my doctor is wise to not prescribe it since I've been through treatment for alcoholism a load of times.

I have early attachment issues, abuse, and severe medical traumas. Not sure what my therapist has to call it for insurance purposes, but she describes all my stuff as complex trauma (or global high intensity complex trauma). Long before a therapist even mentioned a "trauma" perspective, I knew I had something like an adrenaline problem. I feed on good stress, get hyper (not at all in bi-polar way either), and when met with bad stress or just stupid stress (meaningless demands or conflicts) I have a really hard time returning to even a semi-calm bass. I relate really well to the super-sensitive, always-triggered nervous system. My recent meltdown had little to do with thought processes or generalized anxiety. I wanted to set myself on fire. It was intense because I couldn't de-stress. It physically felt like my body was meeting an oncoming truck all day (hyper, whole body rattled and buzzing feeling, not sleeping). SE trauma therapy is most helpful so far...recent appointment helped take that energy down to a manageable degree. I just don't know if I will ever really be "healed". But I wish my general doctor (and most doctors) had more awareness of trauma and disorders of extreme stress. I've been made to feel like a dumbsh#t and complete basket-case many times...told my sensations were wrong, didn't make sense, or that I was too sensitive, or there was nothing I could do if SSRIs wouldn't work. Not helpful stuff. It took a lot of guts to ask for any help this time around.

Anyway, thanks for sharing.

 

[nycpeach1]

Chava, say something!!!! You aren't bonkers- hypersensitivity is classic PTSD. Print out some info, do some research and point blank ask your doctor what experience they have with trauma victims. You have every right to a doctor who treats you with respect and is knowledgeable about your condition.

Sarah

 

[Chava]

My doctor is primarily eating disorder specialized, which I do feel good about, for some of the physical stuff. But I never fit the definition of typical anorexia well either. I knew I was yucky skinny, I didn't count calories or obsess over food. I starved out of a long-developed way to manage my energy. anyway, I did tell her I was seeing a trauma therapist now instead of eating disorder therapist and she seemed to think that sounded good. It's not connected to her clinic, but she didn't question my move to a different therapist, and at least I've given her that info. She's sort of gotten over the too-sensitive and general anxiety bit...maybe trying to understand from a different perspective. I'm still afraid about the arm burns and how she'll react...like want to give me Prozac and send me to a self-injury support group or something. No thanks.

 

[Deleted member 1860]

DESNOS has been around for a long time...

 

[nycpeach1]

True, Solara, but it wasn't recognized by the DSM until now.

 

[Justmehere]

Welcome to the forum @nycpeach1

It's my understanding that this diagnosis was not in the DSM 5 in it's 2013 edition. Do you have a link to any information about that diagnosis being in the DSM 5? I am quite curious to read more about it.

This might be a helpful article regarding complex trauma that speaks of that diagnosis too - Link Removed

 

[Deleted member 1860]

Ok good then all you desnos people don't belong here, right? Maybe you should start mydesnos.com lol cuz you're apparently not like the rest of us. So no more posting your stuff in the ptsd forums cuz you no longer apply, right?

 

[radicalgratitude]

Wait a minute here. We need to be careful about diagnosing ourselves. It is important to hear from a psychiatrist what the diagnosis is.

Someone with PTSD can have amnesia for many years before the memories come to the surface. They will come to the surface in their own time.

I personally have faced a great number and variety of traumas. I have PTSD.

@nycpeach1 Welcome to the forum. You are new here, so I think with time you will find out that PTSD isn't as cut and dried as it appears in a DSM or even on WebMD. Please get a proper diagnosis.

 

[nycpeach1]

Thanks for the support, All. I am currently on disability for PTSD (confirmed by 3 psychiatrists and two therapists) and went to college to study it. While you are correct (and I apologize) for my mistake regarding DES(NOS) in the DSM-V, the two are closely related and one with DES(NOS) is a sub-catagory of those with PTSD.... I have included a link to clarify my mistake and again, my apologies.

I would not insult any of you by doing my research on WebMD. This is far to serious to mess around. I do recommend researching Bessel van der Kolk, a pioneer in the research surrounding trauma, PTSD and DES(NOS). You can visit the site for his nationally recognized center, "The Trauma Center at Justice Resource Institute" located in Brookline, Massacusets.

I would like to thank Solara for her supportive comments- I was told this was a forum we could go for encouragement, support and acceptance.

I apologize for the misunderstanding and will make every effort to be more careful; in the future, I would appreciate the benefit of the doubt. It was hard enough to open up to all of you. I just want to help the community.

Sarah

 

[anthony]

I am sitting here with the DSM V in front of me, and guess what? Disorders of Extreme Stress Not Otherwise Specified (DESNOS) IS NOT included in the DSM V.

Sorry, but your information is incorrect and unfactual. I suggest you go back and research more, because everything you have cited is not factual at all. DESNOS is Van Der Kolks interpretation of Hermans CPTSD attempted diagnosis.

Please give me the page, as I am sitting here with the book, looking in the alphabetical listings for diagnoses, and it doesn't exist.

I understand you're all excited, but everything you are citing is not new information.

 

[anthony]

There is no official diagnosis for CPTSD, including DESNOS... both are currently rejected. The closest available right now, is a proposed blank page in the ICD 11 that currently redirects to a personality disorder. Not exactly what people were hoping for... but still not a diagnosis made at this stage in either diagnostic manual.

We have PTSD-DS, being the sub-type for dissociative and depersonalisation symptoms for PTSD, DSM V.