FND and Complex-PTSD Anyone?

[DNE92]

Hi

Is there anyone else on the Forum who has both FND and Complex-Post Traumatic Stress Disorder? Be good to compare notes or to see if I am the only unicorn in this rather twisted forest.

Cheers

Lou

[Hidden]

I think a lot of us with long term invisible conditions do have medical PTSD. I myself have. This might come from years of reporting symptoms that were not believed by your doctor ie you were medically gaslit ie blown off, told things were all in your imagination etc by doctors. I’ve posted my account of being misdiagnosed earlier on this last month if you’re interested.

Or your PTSD might have come from some non medical trauma such as a abuse, a crash, being severely bullied or attacked etc.

Whether this latter kind of PTSD is then exacerbated or helped by having a label of FND is entirely related to how you acquired and how feel about your label. Some here seem to embrace having a label of any kind - even FND- which they will defend to the hilt.

I’m not one of these at all although I can relate to how defensive people get as I was really glad to have an organic label of a disease I’d long suspected,diagnosed a few years ago, making FND redundant for me - or so I thought.

But now a neurologist has brought it back like reintroducing a nasty smell on top of the existing organic illness - so I’m hoping to hand her it back when I see her in a few weeks.

I had PTSD following on from a year where many medical errors were made and some barbaric things were done to me by surgeons. However I have relocated since then and thought I’d processed this reasonably well.

I think most of us will acknowledge a strong connection between our minds and bodies. Those who support or are behind FND Hope are of the mindset that, by embracing it as a label it then becomes something some doctors will continue to research and advocate for and finally - in the same way as has apparently happened with IBS, Fibromyalgia and ME - FND will be taken seriously by the medical profession - once the science has been found and explained to support it.

However, for me, I do see it as a psychogenic label that is harmful and obstructive, potentially dangerous for me. Doctors were treating my symptoms seriously until this Functional Overlay was mentioned and now important doors that were opening are closing again. They all read the word functional as something with a bad smell and I become a “heart sink” patient - no matter that I have umpteen serious organic things wrong.

On the other PTSD side of things - I am put off going to doctors now because I assume they will think my tummy pain (likely to be PBC) and my worsening disease all symptoms of a functional disorder. I fear they may even do bad things to me again. So I will put up with a lot in order to avoid doctors now. Presently I’m putting up with nausea and upper abdominal pain, which with my history is not good as I could have PBC or autoimmune pancreatitis.

But I don’t want to become a heart sink patient for my lovely GP so I’m trying all sorts of things to see if I can remedy it on my own. Not ideal and potentially dangerous.

Even trying to get rid of this label of FND from my list of diagnosis, is actually reigniting my medical PTSD as any type of misdiagnosing now does. And is proving impossible to get rid of once you’ve got it too. I just have to hope that my good doctors will take it with a pinch of salt - but It has breached my faith in all of the medical profession I must say

Just my take on things though. FND can actually cause PTSD or worsen existing PTSD - or it might prove a helpful label for you. It all depends on what has preceded it and what kind of help you are being offered for it.

Unicorn in a twisted Forrest is a great metaphor - and we are the singed souls who welcome you.

[wallflower_fairy]

Hi Louyse,

I'm actually in the process of getting assessed for Complex PTSD and believe I have had it for a long time. I have Fibromyalgia and started getting new, apparently unexplained, memory lapses, which is why I came on here to enquire, but I haven't yet been diagnosed with this. I'm hoping when I see the Psychiatrist they may be able to shed some light, or refer me to someone else (like a neurologist) who can investigate this and make the appropriate diagnosis.

I just wanted to come and say you're not alone. I think Complex PTSD and FND (and Fibro/ME) are very intrinsically linked. Because I think it's the body expressing the unprocessed trauma(s) in an extreme way.

We can actually find changes in the brain structure (C)PTSD. The amygdala, for example, is the part of the brain linked to emotion and is found to be enlarged (upon recovery, it will return to it's original size), and continually activated when we are reminded of the unprocessed trauma. The prefrontal cortex, responsible for higher level functioning, is reduced in capacity (upon recovery, again, it will be returned to normal). So over time, if this is untreated and, consequently, our nervous system is continually being over loaded (either through further trauma or the continual impact of previous unprocessed trauma), it would start to impact upon and affect our body's functioning too.

This is all information I've come across and I don't have it to hand which is why it's a bit vague, but if you want to know more I know Peter Levine is highly recommended for his work on the impact of trauma. If you look on the Heal my PTSD community they have a lot of reliable information, including what I have shared with you, and can recommend further reading. I can also try and find where else I've referenced this information.

In the meantime if you look on YouTube there is a channel called Medcircle and a series about PTSD - the expert explains it really well (I should probably share with the Heal my PTSD community).

I'll try and link these both in.

I'll also see if I can find links from all the Information I found on FND, which consistently explains that it can come from a significant traumatic event, or a build up of stress over time, and with CPTSD, this can of course be both.

So I really want to stress that you're definitely not alone, and what you're experiencing is very real. I reckon there are a lot of people on here with undiagnosed CPTSD. Your case isn't unusual at all and entirely to be expected.

It's just society that unfortunately has to catch up. People who don't know a lot about this field are relatively ignorant and associate PTSD with being in the armed forces (which don't get me wrong, is a very significant part of PTSD).

In fact PTSD is more common in women who have experienced interpersonal trauma, where (as the lady from the Medcircle series says) someone has made the decision to hurt them. CPTSD is actually also found in the literature to be MORE COMMON than PTSD (I can't remember where I read this but I'll see if I can find it), and yet CPTSD it isn't formally recognised in the latest Diagnostic and Statistical Manual of Mental Disorders (DSM 5) (whereas PTSD has been for a long time) even though it's distinct (although linked) to the classic PTSD diagnosis. But it will soon be a formal diagnosis in the next International Classification of Diseases (ICD 11), so society is slowly catching up. The information out there is over whelming - you just have to look for it.

I really would recommend the Medcircle series as when I watched it it all clicked in my mind and I definitely realised I wasn't going crazy. They use the term PTSD because that's the most clinically recognised term, but I realised when watching it they are still referring to both the Complex and Classic version of it.

I hope this helps.

Xx

[Jazymay in reply to wallflower_fairy]

Hi, I have just signed up and was diagnosed with fnd just a few weeks ago. I was diagnosed with fibro a year ago, and had such severe migraines 10 years ago. 8 years ago I was diagnosed with cptsd.

So yeah, it's all probably linked. My million dollar question is, will it heal, because I have been in intensive psychotherapy for 8 years now. Or do I just learn to live with it and random hospital visits/admissions.

I don't know. I am finding it difficult to accept that it's all down to my mental health. But it might be. I just don't want it to be. Maybe because of the stigma mental illness has.

Anyway, the point is that yes, I have fnd and cptsd. And I have had for a decade, I just didn't know what the symptoms meant.

Thanks,

Jazzymay

[wallflower_fairy in reply to Jazymay]

Hi Jazymay,

Sorry for all that you deal with. Regard to it healing - it's hard to answer your question because everyone is different. There is no straightforward, "one size fits all" cure for either Fibromyalgia, Complex PTSD or Functional Neurological Disorder. It's more a case of figuring out "how to get a handle" on each Disorder rather than cure them. I'm sorry you're still dealing with this so severely in spite of all the psychotherapy. Do you feel it has helped your Complex PTSD at all? It can take a while I know because there's usually a lot of trauma to work through and process. Do you feel you've covered everything you need to talk about?

It might be that you're stuck in a dissociative state so your brain won't allow you to reprocess the trauma despite talking through it. If you're interested in knowing more about this you should check out Kati Morton and her friend Alexa Altman's YouTube collaboration series about trauma. They are both licensed therapists and Alexa specialises in trauma. They explain this issue and give great advice on how to ground yourself so you're able to do the work effectively, if you feel you haven't already.

Alternatively, or in addition, you could see what other types of trauma therapy are out there. In the Heal my PTSD community, I think in the pinned posts section, there should be a list of different types of trauma based therapy with a brief explanation for each.

If you need me to link anything in the comment let me know. I'm sorry I don't have them to hand - I'm typing this on my phone.

Xx

[Jazymay in reply to wallflower_fairy]

Yes, I have tried a few trauma therapies over the years. The one that suits me best is the psychotherapy I am still doing. It is also possible that due to the nature and severity of the trauma I was exposed to, that there is going to be a point where I have done as much as I can.

I have worked through so much distress and brainwashing. I have learnt about real relationships and how to have them. I think that there will also be organic brain development problems due to upbringing.

But I am so much better than I was 8 years ago, and even 18 years ago. I can meditate now, whenever I like. I can ground myself, but don't really need to anymore. I can manage crowds and buses and trains, even though I don't choose to be there.

I guess this is why it is so confusing to get this fnd problem now. But I think acceptance is something I need to work on. Perhaps that will help me now.

Thanks for your replies.

[Dotty1975]

Hi I was diagnosed with FND 3 and a half years ago and have been suffering since August 2014. My consultant believes that my FND was caused by stress and trauma as I have been a serving Police Officer for 22 years. My GP recently diagnosed me with PTSD as well and like others on here I believe it must be linked as in simple terms I’ve coped with too much for too long and my brain has been overloaded resulting in my FND symptoms and diagnosis? Does anyone know if there is any research that had been done to link this please? Many thanks in advance.

[TiedUpx]

I have both C-PTSD and FND. The way my FND unfolded was very sudden, painful and terrifying so it left a mark on me. I was going through a very rough stressful time when it happened having just learnt my partner of 5 years was a cheat and losing my job. Obviously its a much more complicated story than that but it would take me all day to write! and may impact others 👍