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CPSTD, EUPD..or both?

(19 Posts)
SeaDreaming Thu 08-Oct-20 00:42:01

After years of having my CPTSD diagnosis confirmed, I've just unexpectedly had access to my full CMHT records (as opposed to just the copies of letters from the CMHT to me cc'd to my Gp that I'd requested).

The last few times I've been assessed, the same doctor has put "possible eupd?" in the notes.
I had a private assessment a couple of tears ago confirming CPTSD and that it's not EUPD; my CMHT assessments were just before then, and then about three months ago this year.

Today I've spoken to the dr who assessed me about another issue, and mentioned the EUPD concern. She seemed very keen to get me to accept that it's more likely than CPTSD, giving me a load of waffle about labels not mattering.
My problem is that I'm currently jumping through CMHT hoops in order to a access talking / psychological therapies, and these are very different for the two conditions - some articles I've seen suggest treatment for one would exacerbate the other, so I'm a bit worried about what exactly I'm being asked to work towards, and whether I'm managing whatever I do have wrongly.

Anyone been in a similar situation, or have any advice please? I'm actually really upset that she's not been straight with me about alternative diagnoses until I found out about them accidentally.

Thanks!

OP’s posts: |
SeaDreaming Thu 08-Oct-20 00:51:13

Sorry, I missed the chunk out - I'm also questioning whether its possible to have both conditions, as an alternative to it being either/or. If so, how does treatment work in that situation?
I'm more than aware of PD stigma, and also how diagnosis can be used as a barrier to some services etc. I am also aware of so many overlaps between symptoms of PD and anxiety disorders (inc all PTSD variants).

OP’s posts: |
Gingerkittykat Thu 08-Oct-20 01:03:14

I don't understand how the talking treatments are so different? Presumably both involve things like learning emotional regulation skills as well as looking at any underlying trauma?

Chocolatethief Thu 08-Oct-20 01:32:32

You can have both my friend does and I think I do but not sure if I am diagnosed with it, treatment for eupd is dbt which doesnt look at past trauma infact they dont want to talk about it. I am currently having dbt and I think the plan after is to then work on the trauma as I struggle a lot and in my case the worry was that I wouldn't have the coping mechanisms to deal with bringing up the trauma. It can be done the other way round if you do have both though.

SeaDreaming Thu 08-Oct-20 01:38:10

From my friend with EUPD's experience, only DBT has been offered, with no alternatives when she found it too difficult and painful to complete therapy.
She won't go near mental health services any more.

She's found several mental health arts therapy groups refuse to take her due to her diagnosis, and I used to work for a local mh service which helped people with PDs socialise and develop skills because they were excluded from mainstream groups because of their diagnosis.
It just seems to have a limiting impact.

My up to now diagnosis has offered me CBT and psychodynamic psychotherapy, with no mention of DBT.
I've read a bit further since my last quick look into it couple of years ago, it seems that over the last year or so, DBT is being said to be effective in treating some PTSD cases, so I would a bit less wary of it in the case of a mixed or misdiagnosis, I guess.

OP’s posts: |
SeaDreaming Thu 08-Oct-20 01:39:35

Oops x-posted chocolatethief! Thanks - that's helpful to know x

OP’s posts: |
Chocolatethief Thu 08-Oct-20 01:42:00

I understand not wanting the diagnosis I have also found it limits support. I wanted to work on past but it was non negotiable and if i dont do dbt will be discharged from services. Ironically so far I know and use all the skills we talk about in group. I wanted to try and put more of a positive spin on it because I dont want to put you off getting support. My friend had to argue to get therapy for PTSD for but she is more stable then me with the eupd. The skills that you learn in dbt can be really helpful so if you can have it without the diagnosis that would be better as you wont have the stigma of eupd.

SeaDreaming Thu 08-Oct-20 02:23:01

Thank you - I really appreciate you sharing your experience. I am scared of it being the right diagnosis, but if it is the right one, then I'll give anything appropriate a go.

The restriction of therapy options to only DBT scares me to bits- I've got so many layers of unresolved trauma to unpeel with guidance; the concept of having it reduced to distress tolerance and coping skills* without ever being able to talk about specific experiences just feels like a really bleak idea.

*going by my friend's description. She also tried a private DBT therapist, whose main recommendation was to do star jumps when emotionally distressed, and charged £100 for fifty minutes of similar wisdom.

I really hope you get the support you want and need after your course finishes.

I'm going to speak to my GP tomorrow I think; I'm not actually under my CMHT's care at the moment, at least until I finish hoop jumping, so would need to be re-referred to them again if I want another assessment.

I feel a bit like I'm banging my head against a wall trying to get any kind of mental health support (regardless of diagnosis) and it's really frustrating/ miserable.

OP’s posts: |
Chocolatethief Thu 08-Oct-20 03:29:18

I think in my case I will complete dbt so I have the coping mechanisms to deal with the aftermath of the therapy to deal with the past it's a long process think I still have over a tear of dbt left. Think your best option would be to get under cmht as I think you will have to be under them to access the type of therapy you need. I really hope you get the help you need and you dont have to fight to get it.

SleeplessGeordie Thu 08-Oct-20 16:16:30

As far as therapies go, DBT is meant to involve several stages and include one to one therapy. The NHS don't usually offer it - they offer one aspect of DBT, the group skills therapy, and call it DBT.
The skills aspect is supposed to help people stay stable and cope with the distress raked up by the in depth therapy.

Someone1987 Thu 08-Oct-20 22:03:40

That's shocking they wrote that in your notes and didn't say?
I've requested my notes for that reason.
I feel like any past trauma can lead to a EUPD diagnosis, but I wouldn't want that as a diagnosis. The stigma attached...just no.

gypsywater Thu 08-Oct-20 22:07:16

Can definitely have both.
I doubt they'll take attention of EUPD mention unless it has become a formal diagnosis.

SeaDreaming Thu 08-Oct-20 22:16:08

I'm extra rattled because I broached it a few years ago - I was referred to a social worker, and my referrer relied on third party info about my condition/diagnosis. The third party was insistent - for reasons best known to themselves - that I have a PD diagnosis. When I met my social worker, she asked which PD I have, and thought I was lying when I said I didn't, as far as I knew. I ended up with a new social worker after our relationship disintegrated.

Shortly after my initial social worker experience, I had the private/independent and the CMHT assessments- both of which I thought confirmed CPTSD and rejected a PD diagnosis.

Today I've asked my GP how to get clarification or a full diagnostic assessment IYSWIM, as well as what advice I'm meant to follow for self management etc. she's referred me to the surgery's specific mental health person instead of back to the CMHT.

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username501 Thu 08-Oct-20 23:09:53

It's very difficult to say OP. I can understand your reluctance in being labelled and C-PTSD is often mistaken for Borderline (which is a contentious diagnosis at the best of times).

I completely get your frustration at trying to get appropriate help.

I can't see how DBT would be harmful if it's teaching you how to regulate your emotions. It was originally used to treat BPD but is now used for an array of issues including C-PTSD.

I would look into other places outside the NHS for help. You might find Rethink helpful and NAPAC if your trauma is related to your childhood. They can guide you to cheap or free therapy.

For C-PTSD you want trauma therapy. I would look at EMDR, DBT, psychodynamic trauma therapy and hypnotherapy. Check out Anxiety UK for low cost therapy which includes hypnotherapy. Do an online search for free or cheap clinics.

There's a very good book by Pete Walker called Complex PTSD from surviving to thriving that you may find helpful. I would also look into mindful meditation and some form of exercise such as Qigong or Yoga.

SeaDreaming Fri 09-Oct-20 00:22:31

Trigger warning time (abuse etc)
I got trauma relating to CSA and other abuse within my family (got the PTSD diagnosis for that in my thirties). It evolved to CPTSD after experiencing sexual assault a couple of years after that, from a friend the first time and an ex partner seven years ago.

Plus a traumatic unexpected bereavement a couple of years ago, when my (then) partner died; in hindsight I also realise I was in an abusive relationship with them. I've only had a CMHT assessment that got me nowhere at the time, and couple of phone calls with the samaritans to try and deal with all the conflicting feelings I have around all that.

I know DBT would help with coping with the emotions I experience in relation to all the above, but I really do feel like it would be useful to actually be able to talk about the specific shit that's happened to me - partly because I still have to see some of the people who supported/still support my rapist ex (members of a couple of specific political housing and workers groups), and I'm finding it impossible to move forward as things stand. A few groups of them live within a couple of hundred metres of my house, outside of that, they mostly work in third sector services and I keep getting the orgs they work for socially prescribed to help with my recovery (think community gardening, women's groups, organisations running courses for people with MH issues, community centres, college courses, aromatherapy, massage, yoga, mindfulness groups etc. At one point their membership included my GP (I've since changed practices as I found going there to be really triggering).

I always end up being really upset at having to interact with anyone from those communities, and then feel like I'm reacting wrong. It's horrible being told to ask for 'gentle ' (not psychiatric) help from people who I've found to be actively harmful to my recovery, and who have happily labelled me a liar and/or mad. It's exhausting coping with afterwards too.

Sorry, that's a bit of All The Brain Things overspilling. I'm really tired of trying and failing to navigate a way through all this.

The only solution I can think of is moving away from the area, which would remove being around so many things that I feel are slowing down any attempts to heal/make my symptoms of whatever it is worse. Whether that's a cop out or a sign that I'm disordered doesn't really matter - I'd just like to feel like I'm not living in a pressure cooker. I went away for a couple of days, and being back home has been miserable- the time I spent away from here was the happiest and safest I've felt in years. I hate that I don't have that feeling at all here.

OP’s posts: |
username501 Fri 09-Oct-20 00:37:33

I suggest you move. It sounds like that would be a great first step. You need to focus on healing and keep away from triggers.

I'm sorry to hear about the abuse and subsequent abusive relationships and other trauma.

EMDR may be worth looking into for the sexual assault and bereavement. You can read more about EMDR here.

DBT is useful because it teaches you ways of coping with often overwhelming emotions that often accompany survival of childhood abuse.

However, I'm not saying that that is all you should do as I can really hear how much you need to talk about this.

Survivor's Trust may be a good organisation to contact as they can help with therapy around the sexual abuse and subsequent trauma. They have a helpline that you may find helpful and you can give them a call to discuss: 08088 010 818

Opening hours:
Mon - Fri 10am – 8:30pm
Sat 10am – 12:30pm, 1:30pm – 4:30pm and 6pm – 8:30pm
Sun 1:30pm – 4:30pm and 6pm – 8:30pm

I've already recommended NAPAC as well as Rethink who can both offer advice and help regarding cheap or free therapy.

I would follow those routes OP although like I said, DBT is certainly worth having a think about in addition to other alternatives. Cruse can offer free counselling around the bereavement if you think that would be useful. Explore all avenues.

SeaDreaming Fri 09-Oct-20 20:05:40

Thank you all for the advice, resources and kindness x I'm going to take the weekend to use some of them- they look really helpful.

I've picked up a letter from my GP supporting an application for social housing away from the area I live in. It's pretty accurate for the most part, but when referring to the issues with certain specific people/accessing services theyre involved in that I talked about upthread, it says just that I get agoraphobic, anxious and feel persecuted and experience paranoia about people from my past who I encounter in authority positions hmm I'm not completely ok with that description - the persecution and paranoia bit makes me sound like I'm delusional, which I don'tthink I am - that might be a knee jerk reaction on my part though.

On a more positive note, I've self referred for social prescribing, and they've said i'll have the ability to say in advance which orgs I don't want to go anywhere near (I was going through the local resources directory, and just going nope at so many places) - I may as well try find some space that feels safe while I'm here, however long that takes.

OP’s posts: |
username501 Fri 09-Oct-20 22:36:21

Great strides OP. I'm glad the info was helpful. You'll get there, don't worry. smile

ShelbyCherryBlossom Sat 10-Oct-20 05:08:31

I have BPD (refuse to call it EUPD) and have also had PTSD. You can also have more than one personality disorder (I technically have 3). I've had both DBT and CBT, DBT was incredibly successful for me but there are 2 different types. The star jumps mentioned in a PP is part of RO-DBT which is used to treat a different group of PD. DBT is 6 months long and you repeat it after 6 months so you cover the 4 modules twice. It's a group therapy and a one-to-one session which is where you talk about the really personal stuff (you're discouraged from talking about anything that could be triggering for others, in a group session). I only got proper support when I moved, I was in an area where mental health services were very poor and was told I needed to end up in hospital to be taken seriously. I moved areas and immediately was seen as an emergency, so it really does depend where you live unfortunately. I hope this info helps, there's lots of contradicting and incorrect info out there but I've just finished DBT so know exactly what it's like! Good luck to you thanks

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