Hi all. I'm trying to assess how much trouble I will have with the medical establishment over this semi self-diagnosis. It isn't in The DSM-V (dropped it at the last minute amidst controversy). Here is the World Health Organization's definition
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559
After successfully keeping my life mostly positive with a diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, the DSM-V came out, I changed GPs and things went downhill. All of a sudden I was diagnosed Bipolar II by one Pdoc and BPD by another. There are symptoms in both (violence, narcissism, risky behaviour, etc.) that I have never manifested. C-PTSD fits me perfectly.
compound this by my basically being locked out of the mostly useless 'mental health care system' here in NS, I have basically been untreated for years now.
Has anybody here had any experience with this diagnosis? Ant thoughts/advice on getting this diagnosis recognized? I'm at a point where I can't even leave the apartment by myself. Life is just pure misery and I can't get any help.
Hi Paul,
Are you getting any treatment for the diagnoses you already have?
I have major depressive disorder diagnosis and the treatment for that seems the same as for cptsd, meds and talk therapy?
If you could get the mdd treated it might help you even without a full and accurate diagnosis?
Hi Paul,
The link you provided takes me to a page that says "Not Found." :Idunno:
In a reply to a post (http://cptsd.org/forum/index.php?topic=11333.msg81430#msg81430), kizzie said this :
QuoteMany of us here self-diagnose... mainly because physicians and mental health professionals do not yet know about Complex PTSD/Trauma, in particular in situations such as workplace abuse.
However, many do and this is reflected in the fact that the International Society for Traumatic Stress Studies has a Complex Trauma Special Interest Group - https://www.istss.org/about-istss/special-interest-groups/complex-trauma-sig.aspx. Also, while Complex PTSD/Trauma is not yet in the APA's DSM as an official diagnosis, it has just been included in the WHO's ICD and much of that is due to the push by mental health professionals to have it recognized so that people like us around the world can get the treatment, services & support we so need whether it's because of abuse in childhood or adulthood.
I guess my point is don't let ignorance stop you from what you know to be true. Keep trying to find a GP and/or T who is knowledgeable and will help you, not tell you you are just too sensitive. Abuse in the workplace is a very real issue which
There are many treatments gaining in popularity (such as EMDR, biofeedback, etc) that treat the brain itself, not just the mind. Things are changing, the omission of cptsd from the last DSM is a topic that's been widely discussed :pissed: here.
Hi Three Roses,
Sorry about the link. Should be:
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559
Quote from: Paul57 on December 28, 2018, 07:16:29 PM
I'm trying to assess how much trouble I will have with the medical establishment over this semi self-diagnosis.
It's hard to say how much trouble. I was dismissed for quite a number of years with my self-diagnosis, but I persevered (on and off). One psychiatrist I went to for a while is known as a trauma specialist round here, but now I realise that she was specialised for ptsd and quite simply didn't recognise cptsd caused by childhood neglect and covert-seeming abuse. So she told me I had Narc PD. I've heard BPD quite a few times too over the years. I finally asked my gp if he'd put cptsd in my file "because that's what's behind it all" and he did. Up till then I had "depressive episode", which I thought very strange because depression went on for years, not just episodes, and I also had a long list of descriptive diagnoses (eating disorder, psychosomatic pain, anxiety etc). Since my gp added cptsd, the diagnosis has been more or less accepted and the long list has been much reduced because many of the descriptive diagnoses are part of my blend of cptsd. I'm not in NS or even in the same country as you. In my country they give you code number for ptsd and then specify "complex ptsd", or at least that has been the case for a number of years now.
My NPD diagnosis came about 15 years ago and never actually ended up in my file, because my gp decided I shouldn't continue with that psych, fortunately. Although cptsd is still not recognised as often as it actually exists i.e. there is still too much ignorance among docs, therapists, psychologists etc, it is getting better. otoh depending upon where you live - well that will affect things too. If your experience of your local mental health care system is "mostly useless", then that doesn't sound very encouraging, unfortunately.
I hope you can get some encouragement and begin step by step on some form of self-healing just from this website and forum. There is a lot of very useful and up-to-date information to be found on here, lots of links. Also lots of mutual support, validation and encouragement on the forum. That was my impression long before I became a mod ;)
On healing / self-healing: baby steps count in cptsd! Just starting to write here and asking a question is a step, or two steps in fact. Good luck and hope to see you around the forum!
Quote from: Rainagain on December 28, 2018, 08:23:06 PM
Hi Paul,
Are you getting any treatment for the diagnoses you already have?
I have major depressive disorder diagnosis and the treatment for that seems the same as for cptsd, meds and talk therapy?
If you could get the mdd treated it might help you even without a full and accurate diagnosis?
Hello, yes, I have been treated for depression for 25 years, but mostly with SSRIs. There is basically no mental health care in our local community medical services (in name only) and I have seen several private therapists who have no practical suggestions.
Hi paul and all
Is cptsd not going into the next icd 11 ? I thought it was ?
Oh i see it is in the icd but not dsm ? Do some countries only use dsm ?
Im in the UK
I've just looked dsm is the american diagnostic manual and icd global ...
Does USA not recognize icd ?
Hi Paul
I am going to preface my response by saying I am in Australia and working with the system here, which seems to differ in some key ways to systems in other countries. That means I do not know which parts of my approach can translate well to you where you are based. You also mentioned some availability issues for mental health support in your area. But perhaps there might be something which is of potential use.
I've had 3 psychologists acknowledge and support CPTSD, but I'm not sure if that counts as an 'official' diagnosis. I don't think it is truly possible in my country, given the DSM failure to accept it yet. But I requested my current psychologist write that term in her required correspondence with my GP so that it would be in my medical files also. I think an earlier one mentioned it, and previous GP mentioned 'trauma', so I had the beginnings of 'paper trail' a few years ago. I have recently relocated and will need to find a new GP. I requested support and introduction letters from both my previous GP and my psychologist for potential new GP, and both letters are really good. The psychologist references CPTSD and the GP letter says things that support what the psychologist has said, even though they don't mention that term. I feel better knowing that once I find a new GP I feel adequately trusting of, these documents will go on my file.
What I have done, and will continue to do, is to specifically research psychologists who advertise themselves as working with CPTSD, so I won't even see one who hasn't got that stated as part of their practice area (I also 'interview' new GPs in order to find one that 'fits' for me as best as possible). In Australia we have an organisation called the Blue Knot Foundation which focuses on adults with complex trauma, so I called them and was emailed a list of various counsellors and psychologists who had completed training with them. Perhaps there is something like that where you are? Might be some places you can contact to start making enquiries along those lines?
Now, for the record, I've also had mixed results with those therapists - one in particular ended up being all theory but no embodied grasp, so it was unfortunately rather re-traumatising for me. She wrote a report with a frustrating mix of really useful things and really biased and disempowering things (and a lot of errors), which I ended up declining. I mention this because I think we are still in such early days of CPTSD therapeutic approaches that we still need to be very much our own advocates in therapy and can't always assume the 'experts' know best. But even the 'negative' psych wrote some really clear stuff about my CPTSD, referencing my ACE score and generally coming from a professional-sounding place that completely legitimises that as my diagnostic reality.
So, my experience has been that I have really had to do the research to find the therapists who are already attuned to CPTSD. I've then requested my GP to write referrals to them as part of my Mental Health Care Plan (10 subsidised clinical sessions in a year, though I have paid full price for extra sessions, also). Having an established relationship with the psychologist and working with them for some time within the context of CPTSD, they have been able to start writing things about that which get referred back into GP records. The supporting documentation can start to accumulate and this, as far as I'm concerned, is how the narrative of CPTSD - of what makes most sense to my experience - becomes accepted. If I have my records transferred to a new GP, this is the narrative they are inheriting. I have dx of Depression and Anxiety, as well as a couple of physical health conditions, but have made sure I do not get involved with anyone, or go along with any discussion, which suggests other dx which I feel are innacurate and unhelpful - eg; BPD or bipolar (I've had one GP float BPD coz of emotion regulation issues, as well as ADHD for focus and processing issues, but all of that belongs under CPTSD, so why collect more of the alphabet than necessary?). I'm ok with sticking with the Depression and Anxiety as they are not so stigmatised, so inherited narratives are less potentially damaging.
What I am describing is a bit of a 'long-game' approach which I continue to refine with experience - both positive and negative - and other learning. But this is part of how I advocate for and empower myself within a system which is too often seriously messed up and damaging. And I truly hope I am not overwhelming you with the 'long-game' concept, but I do mean to impart a sense that if you have the capacity to start directing your own care from an increasingly informed place, then that may be how you can start to get the recognition and support you need from The System.
Apologies if this is an irrelevant, long-winded ramble, but I really hope something I've said here will be of use to you.
Hi paul and sj
Thank you for your post sj ...good to.read as this is a smiliar tact to what I'm taking with my journey
Blue knot is great
Quote from: Boatsetsailrose on January 03, 2019, 11:22:18 AM
Hi paul and all
Is cptsd not going into the next icd 11 ? I thought it was ?
Hi, it already is. Sorry, here's the updated link:
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559
Thanks everyone for your input. I'm in Canada which no longer has a medical system per se. I can't change GPs and have been blackballed by community health ("BPD", "not worth treating", etc.)
I'm sorry your experience of the local medical system is so bad. I don't live in Canada so I have no idea there. I just know that I'm pretty well off medical system-wise. Though I have heard the "BPD" / "therapy-resistant" kind of put-downs too.
There are others on this forum who don't get any kind of diagnosis or much of any treatment, or who are maybe on waiting lists for a very long time before they can see anybody. What you can do in that sort of situation is use the tools available on the website in general and on the forum. Check the Resources section. Check Pete Walker's books, or even his website if you don't have the money for books. There's lots of information available. https://cptsd.org/forum/index.php?board=49.0 is pretty useful too, ways mbrs have found of improving things for themselves for even 3 minutes a day in self-care. And there's lots of encouragement and validation on and from the forum. Good luck.
Thanks Paul ...
I don't get fired up greatly in life anymore (especially with sedation of anti dep ) but i keep hearing of people getting a bpd label and its really igniting a fire in me to get cptsd even more on the scene. I was just talking to a friend the other day and yep he has been given this often negativey seen diagnosis ..
Im so motivated right now to use all available resources to stand up for cptsd support and treatment .. I shall post my journey under treatment as i go along ..
I'm from Canada Paul and fortunately did not encounter a problem being diagnosed and that was almost 6 yrs ago in NS. I now live in a rural part of BC now and when I moved here 5 yrs ago my new GP knew about CPTSD and has supported me throughout. So I don't think it's that Canada's care sucks so much when it comes to CPTSD, it's lacking everywhere because it is new. For far too many of us, trauma trained and experienced mental health professionals for either publicly funded or private treatment just aren't outside of major cities as yet.
I did find a psychologist here after much looking but it is a 50 minute drive and is not covered by public health care. Fortunately I have some private insurance although that doesn't go far at $190/hr.
Unfortunately we have to advocate and push for better treatment, services and support everywhere if the members her are any indication. We do have info sheets and forms here (https://www.outofthestorm.website/downloads/) you can take with you to appts to make your case and also start a paper trail as sj and others have suggested. The handouts by the Blue Knot org are really great as they were written by a medical doctor and professionals respond to that.
It is in the ICD 11 at https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559
Hi paul yes it is i was pleased to find it and have printed off several copies in my glee :)
(just an FYI - the ICD-11 will not take effect until 2022
QuoteICD-11 will be presented at the World Health Assembly in May 2019 for adoption by Member States, and will come into effect on 1 January 2022. This release is an advance preview that will allow countries to plan how to use the new version, prepare translations, and train health professionals all over the country.
Ref https://www.who.int/news-room/detail/18-06-2018-who-releases-new-international-classification-of-diseases-(icd-11)
Thank u three roses...makes me curious of how the uk will prepare and how prevalent training will be for health professionals ? I would like to start researching about this ...
Just had an academic article come across my desk titled "The replicability of ICD-11 complex post-traumatic stress disorder symptom networks in adults" which has been or is about to be published in the The British Journal of Psychiatry (Knefel et al).
The abstract confirms that researchers are actively engaged in investigating CPTSD based on the definition in the WHO ICD-11, despite it (the ICD-11) not being formally released until 2022. This could form the basis of a request for the diagnosis, I don't know. :Idunno:
Just as an aside, the researchers looked at symptoms in four countries and determined that they are for the most part stable across both culture and type of trauma:
The ICD-11 includes a new disorder, complex post-traumatic stress disorder (CPTSD).... Despite differences in traumatic experiences, symptom severity and symptom profiles, the networks were very similar across the four countries. The symptoms within dimensions were strongly associated with each other in all networks, except for the two symptom indicators assessing aspects of affective dysregulation. The most central symptoms were 'feelings of worthlessness' and 'exaggerated startle response'. Conclusions: The structure of CPTSD symptoms appears very similar across countries. Addressing symptoms with the strongest associations in the network, such as negative self-worth and startle reactivity, will likely result in rapid treatment response.
It's a real concern, I think. With my new circumstances, I think I might need an official diagnosis. Any diagnosis, really. Because I might need to access more support. I am not very hopeful and really rather scared. I know what a struggle you have had, Boatsetsailrose. It shouldn't be like this, should it?
How interesting kizzie confirms what we all.experience here very similar symptoms against similar or.different history experience of trauma ..
Yes the prevalence of the worthlessness hole in the middle of the injuries....
Researchers please research away wondering how i could place myself to be part of studies
Hi libby
Yes getting the right help and treatment can be a long road for us. I see it that we are continuing to pioneer the way forward for not only ourselves but also others to walk a potentially easier path. Getting good and effective support and both non and clinically sound good information has been so important for me along the way to inform my next move. Ive had many periods of being so unwell its been harder but have always kept going overall in the bigger picture. As is the case with any health problem some will get better recognition than others , some will have lower access and narrow treatment options and some will win out and get effective care that reduces the symptoms of cptsd and improves individuals quality of life. I see that its doing the best we can to get the support we need to then push forward with expanding the healing. . I'm so glad i can come here through it all..and this community of us is here ..
Advocating for ourselves armed with the resources and information alongside being able to articulate what the internal and external experiences are like living with complex.ptsd and a dose of right place right time right professional or healer is the formula that seems to have held me in best stead. its a big ask for an unwell person but as it stands in the world its what's generally required. ..
I believe this can and will change over time and im so pleased at the direction of recognition / treatment for cptsd is heading in ...if one person one day in the future doesn't have to advocate so much for themselves and gets taken 'care' of quicker than we have then its evolving ..
Imagine a world where young people and doctors are educated enough to spot it and treat it as medics do diabetes or high blood pressure .... Mental health still.has a long way to go and even though the royal family are now advocating for better treatment and less stigma (lol) in the uk :) as a society we have leaps to take ...
Finding the ones who.can help us no matter how long or far the journey is my life's mission
Quoteits a big ask for an unwell person but as it stands in the world its what's generally required. ..
It's a
huge ask Boats, you're so right, especially given right now we have to convince others about what we know in our hearts we are suffering from. And given our trauma this is incredibly difficult because we have been left feeling powerless, hopeless, have been taught to be silent, not make waves, have been minimized and invalidated.... It's only as we begin to recover that we can speak and advocate more for ourselves as you know only too well.
Personally what I'd like to see is an organization for trauma survivors that has chapters in various countries with volunteer survivors and others who will help trauma survivors navigate through the health, legal, justice, and social systems, something that's so difficult to do when we are at the beginning of recovery. I know social services are supposed to do much of this, but for the most part they seem to be overwhelmed in most countries and don't know much about Complex Trauma just yet.
For now though just by drawing more attention to the diagnosis when & where we can we are educating others about what we need/want and that is going to foster change.
Kizzie agreed a global organization on the ground supporting people to navigate . ..that experience survivors gain to help others priceless ..
I have got some of that via Acoa and that is how i found out about a charity who provided me with trauma specific support for no cost...
:thumbup: That's exactly what I'm talking about Boats, wouldn't that be awesome?
And just to bring this back to Paul's original post, having peers in the same area would make exchanging info about which professionals/organizations know about CPTSD, where we were diagnosed and by whom, etc., so much more possible.
Mention of sexual assault.
I was very lucky to find a trauma-informed counsellor who only charges me 10GBP per week. Well, I say very lucky.... It was through Rape Crisis, so. Have you tried looking for trauma-informed MH providers who do sliding scale fees and will work over the internet? I often have pain/mobility/fatigue problems, so we often have sessions over Skype. Just be very careful - there are many "therapists" online who aren't actually qualified as counsellors. Good luck!
I belong to a few cptsd support groups on Facebook and on one there were a few people from the uk saying they had just had the official cptsd diagnosis yet when I talk to my psychologist about it she says she knows all about cptsd and thinks that's my diagnosis but because it's still not officially recognised she still has to treat it as ptsd. This is frustrating, I think it must depend on which area in the uk you live and maybe what the therapists are trained to treat? I don't know, that's just what I think, but it is annoying that people in the other side of the country are understood yet I'm still being treated for something else although they know that isn't the case!!
Unfortunately it is a bit of a transition time for us all over the world b/c the diagnosis isn't officially out there. You could mention to your T that it has been accepted by the WHO Member States although the official version won't be published until 2022. As I mentioned in an earlier post, it may/may not help but perhaps worth a try. It might also help to find out who was diagnosed where in the UK and let your T know that as well? :Idunno:
This is a bit of an aside Eyessoblue but I can always add the info for those groups in our "Resources" (https://www.outofthestorm.website/face-to-face-groups/)section if the groups so wish. The more local support out there for us the better. :yes:
Like Eyesofblue, I was treated as having PTSD. I'm not sure that this was an appropriate approach. I do hope we can help get the message out there and that the official stuff would follow.
Hi eyes so blue they can diagnose under dsnos (disorders of stress not otherwise specified ...a lot of mh profs know complex trauma just not as the offical diagnosis of cptsd ....
So i got diagnosed as the above and then asked.the psychiatrist to add.into.the report after the icd classification -cptsd which he did....
It seems the psychologist is taking one view point that is rigid to the exclusion of what is very possible. You can ask for a second opinion? Push that you not willing to accept that they say its likely your diagnosis but are shutting down on getting that recorded.. You are.helping me to.think here about once it is in the icd will they have official.diagnostic assessment ...interesting .
Also you could do your ace score online and take that along ....?
Kizzys suggestion of collating in what postcodes others in uk have got the recognition seems.good.idea and ypu could also take that info to pals (NHS patient advocate liason service ) where you can make a case of it ...NHS standard of service and potential treatment based on postcode lottery is not OK ...
Sad to hear you have a different experinence to some others due to your postcode. .
Quote from: Paul57 on December 28, 2018, 07:16:29 PM
Hi all. I'm trying to assess how much trouble I will have with the medical establishment over this semi self-diagnosis. It isn't in The DSM-V (dropped it at the last minute amidst controversy). Here is the World Health Organization's definition
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559
After successfully keeping my life mostly positive with a diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, the DSM-V came out, I changed GPs and things went downhill. All of a sudden I was diagnosed Bipolar II by one Pdoc and BPD by another. There are symptoms in both (violence, narcissism, risky behaviour, etc.) that I have never manifested. C-PTSD fits me perfectly.
compound this by my basically being locked out of the mostly useless 'mental health care system' here in NS, I have basically been untreated for years now.
Has anybody here had any experience with this diagnosis? Ant thoughts/advice on getting this diagnosis recognized? I'm at a point where I can't even leave the apartment by myself. Life is just pure misery and I can't get any help.
CPTSD on the ICD-11 will replace this diagnosis from ICD-10 (F62.0):
"Enduring personality change after catastrophic experience"
Enduring personality change, present for at least two years, following exposure to catastrophic stress. The stress must be so extreme that it is not necessary to consider personal vulnerability in order to explain its profound effect on the personality. The disorder is characterized by a hostile or distrustful attitude toward the world, social withdrawal, feelings of emptiness or hopelessness, a chronic feeling of "being on edge" as if constantly threatened, and estrangement. Post-traumatic stress disorder (F43.1) may precede this type of personality change.https://icd.who.int/browse10/2016/en#/F62.0
I am diagnosed with it. It description is similar to CPTSD, the only difference it is that it assumes that you have a previous healthy personality before the traumatic experience while some of us were abused since before being born.
If anyone is interested, here are two position papers from the Int Society for Traumatic Stress Studies that lay out where the MH world is at in terms of a diagnosis of Complex PTSD:
Position Paper on Complex PTSD in Adults (https://www.istss.org/getattachment/Treating-Trauma/New-ISTSS-Prevention-and-Treatment-Guidelines/ISTSS_CPTSD-Position-Paper-(Adults)_FNL.pdf.aspx)
Position Paper on Complex PTSD in Children and Adolescents (https://www.istss.org/getattachment/Treating-Trauma/New-ISTSS-Prevention-and-Treatment-Guidelines/ISTSS_CPTSD-Position-Paper-(Child_Adol)_FNL.pdf.aspx)
In June of 2018, the World Health Organization (WHO) diagnostic system, the International Classification of Diseases and Related Health Problems (ICD) formally introduced a diagnosis of complex PTSD (CPTSD). In ICD-11, PTSD and CPTSD fall under a general parent category of Disorders Specifically Related to Stress. PTSD consists of 3 core elements or clusters: re-experiencing of the traumatic event in the present, avoidance of traumatic reminders, and a sense of current threat. This formulation conceptualizes PTSD as a conditioned fear response and emphasizes symptoms that tie the disorder directly to traumatic events (Brewin et al., 2009). CPTSD includes the 3 core elements of PTSD as well as 3 additional elements that reflect the impact that trauma can have on systems of self-organization, specifically problems in emotion regulation, self-concept, and relational domains under conditions of sustained, multiple or repeated traumatic exposure.
Thank you kizzie ive downloaded.for reading ...will communicate when i have ....
thank you Kizzie :thumbup:
Also, there's another very recent paper that speaks to the fact that clinicians/researchers are pushing ahead with the diagnosis of Complex PTSD now that it has been adopted by the World Health Org in their diagnostic manual (and despite the fact that it isn't in the APA's DSM).
Karatzias, T. et al (Feb 2019) Psychological interventions for ICD-11 Complex PTSD symptoms: Systematic review and meta-analysis, Psychological Medicine
Abstract Excerpt:
The 11th revision to the WHO International Classification of Diseases (ICD-11) identified Complex Posttraumatic Stress Disorder (CPTSD) as a new condition. There is a pressing need to identify effective CPTSD interventions.... Conclusions: The development of effective interventions for CPTSD can build upon the success of PTSD interventions. Further research should assess the benefits of flexibility in intervention selection, sequencing and delivery, based on clinical need and patient preferences.
Progress! :thumbup:
Fabulous :)