Conversion Disorder - these symptoms sound familiar....

[danlexboo]

Hello, and apologies for my naivity!!

I am new to the forum, and found it after a search really because I have had enough now!!!

Conversion Disorder - now here is a new disorder to look at, and as I look the symptoms are VERY familiar.

I have numbness, especially in my hand, arms and legs, I slur my speech for no reason, I have very little balance and fall over or down stairs a lot(!!), I have pins and needles in my hand all the time and I have random and unexplained muscle aches at odd times.

I have had all sorts of scans and tests, and they are all negative. I should be relieved by this, but, actually I would rather be able to know I have "XXX"

Maybe this is telling me I actually do have something, maybe now the Dr's and consellors can treat something. I know I had a breakdown, I have come to terms with that, I just can't stand the ongoing symptoms and not actually getting better!!

Sorry this is so long.......

 

[CSF]

How long have you had CD?
Have you been diagnosed?
Is treatment working?
Why are you sarcastic - if you have CD you cannot change the subconscience causing physically distressing symptoms can you

 

[danlexboo]

A reply to CSF

CSF

I apologise if my previous post caused offence or came across as sarcastic.

I am just grateful to have found the forum and that i may well have now, finally, found what i have.

I first showed signs of CD back in the mid 90's when stress was really getting to me. I was ill, having brain cans, and then right in the middle if everything went blind in my right eye. This was diagnosed as a CSR. It took a year to get better and then, almost to the day, went again. So i spent another 12 months blind in one eye!! I have now had the latest round of symptoms since 2006/7

I am now seeing the DR again to have more tests to hopefully confirm CD. The DR currently has stated that after having a breakdown in 2006/7 i should now be recovered from depression because of the medication. Therefore my ongoing distrss is just me being "bloody minded", so first i have to convince the DR's of CD and then, if there is a treatment, get treated. At least now in my own mind i can see the potential illness.

So, if i come across as sarcastic i unreservedly apologise. I admit that i am frustrated with myself as i find i can't do so much. My children want me to play with them and oftem i can't. as an example the children want me to join them on their trampoline, i go on for few minutes and have to get off. They want me on for much longer playing. If i stay on i just feel more yukky!!

And thus i apologise if i seem anything but sincere, as you can see i am just tired and worn out by everything right now. Hopefully the forum will help....

 

[CSF]

Ok I probably was a bit sensitive as I am trying to get head round my recent CD diagnosis from a NeuroPsychiatrist (and several Neurologists who have written organic findings in there previous movement disorder diagnosis).

I do hope you find help here.

Everyone sysmptoms are different with CD - but equally distressing and I understand your loss of sight - I Have been shown by an optician how to bring my eyeballs down when they go up in my head. This is only possible is really relaxed. Physio is essential you need to ask your doctor to help you be referred to local services. My hospital did this on discharge thankfully rather than any request being needed.

I find my recent diagnosis hard to understand - but all I can say is Physio is showing slow steady improvement in my movement/walking (it is not that good for uncontrollable terrets noises that come out during exercise/movement) + loss of speech and attempts to get it intelligible to people is very slow, frustrating and this is counter productive to relaxation therapy.

The problem is the brain and mind are very complex - there was a programme on TV last night about the unusual brain disorders channel 5 every Thursday at 11pm. I for one will never understand my condition so I try to focus on rehab - physio, speech therapy, OT and CBT (psychology) to maximise independent living, and as normal a family life as possible. At least this gives me a focus (positive) as low mood /depresssion pushes us towards not exercising and creates negative chemicals in brain and vicious circle = all symptoms worse.

Keep the faith and I hope you get the answers you are seeking re a diagnosis. As for improving ability to spend exercise / quaility time with kids & family - this if it is anything like other sommatorform conditions and CD stories I have heard, will be a slow journey of active physio and OT and CBT/psychotherapy - no quick fix for cases lasting longer than 12 months all journals say.


Good luck and hope you get the help you need here and with doctors.

 

[Blame]

Not deserving of treatment

Hi,

I'm new here. Had bad time, blamed, shamed and even physically assaulted by professionals for not being able to get over myself. Don't do Dr. Ignorance abound.

I have read that the brain is made up of circuits like a computer. These circuits are layed down during development. Circuits can lay dormant for years until some physical or emotional injury or distress activates these circuits and they start to light up. Hence the physical symptoms. These circuits that light up can in turn cause significant conscious or unconscious distress that can affect hormone regulation. This can be both a Psychiatric and Psychological problem.

The illness like all illness has both a physical (the brain is part of the body, although the structure of modern medicine hasn't caught up with the obvious yet) and psychological component.

Psychological treatment can help by deactivating circuits. There is physical (brain scan imagery) to support this. Psychiatric treatment can help to regulate the hypothalmic-pituitary-adrenal axis. But, like all chronic conditions and individual treatment responses they can vary in effectiveness.

No one should be told that their illness is not genuine and that they are able to turn it on and off at will. Science has proven through brain scanning that this simply is not the case. No one should be judged for being ill.

Ignorance abound. If I went into hospital with problems with my heart I would be seen by a cardiologist. If I broke my arm I would be assessed by orthopedics. I would not expect to be assessed by midwifery for a heart problem or a broken arm. But, where is Liason Psychiatry in our hospitals. Where are the specialists? Where are the patient information leaflets?

The GP's role is then to manage you to avoid further iatrogenic harm as a result of unneccessary procedures and protect their budget. So, physical disease is often ignored and patients suffer unnecessarily. And, if your GP has not been trained (which is very likely because even Psychiatry neglect these type of illness in favour of schizophrenia, Bipolar and depression) as a patient you are open to all forms of bigotry and abuse.

I have been blamed, shamed and even physically assaulted on many occasions without provocation because I can't get over myself. I am unable to turn off the switch in my head that is making me ill because I can't find it. I feel from experience and as a reasonably intelligent person that I actually don't have one!!

But, try to explain that idea to a under trained, stressed out medical professional.

 

[CSF]

yes i agree

cd is a nightmare i hate the physical barriers it creates compared with the normal life I (we ) all once had. At moment i'm fighting low mood as the battle to keep progressing as much as can to have normal life - everyday is a mental and physical struggle.

 

[mcintyre]

CD is a constant battle - and more so when no treatment is available or made available.

I was dx'd in June 2006 by a Neurologist, with a confirmed dx in September 2006 by a Psychiatrist, who also outlined a treatment plan which, he said, should help get rid of the physical symptoms. This plan included relaxation exercises, CBT, anti depressants and long term psychotherapy.

He also stressed that it was of the utmost importance that this treatment be started asap as by then I had already had at least 6 months and possibly (taking into account strange events from before I got really bad) around 3 years. He explained that if my "dissociative state" as he called it were allowed to continue much longer then the prognosis would be poor.

2 years and 2 months down the line the only treatment that has been made available to me is anti depressants in the form of Citalopram (which I tried and which caused allsorts of strange stuff) and Fluoxetine which I refused. No other treatment has ever been offered or discussed and I now manage my physical symptoms (I prefer to use the word problems) myself. I now find that I use a wheelchair most of the time, I slur speech and stutter, my memory and cognitive capabilities are all shot to hell and I don't have much co-ordination in the left side of my body.

My right eye sometimes has blurred vision, sometimes is painful and I am currently seeing an Opthalmologist for this.

Despite all of this (which makes me sound a right useless idiot!) I am working full time and am still able to drive and pretty much take care of myself.

Compare this response to the one my partner, who has MS, gets - we have almost identical problems, only she is not as physically disabled as me, she is still able to walk more than I am but has been given a physical dx as opposed to my mental one.......

I have pain in my eye and blurred vision, see my optician who dx's optic neuritis, tells me to see my GP, which I do. I am referred to Opthalmology and wait for over a year before being re-referred at my request, and am now under an opthalmologist who has requested yet another MRI scan for me, and no form of treatment yet.

My partner has pain in her eye and sees her optician, who dx's optic neuritis and tells her to see her GP (same GP as me), she is referred to her MS nurse who arranges treatment in the form of a 3 day course of IV steroids immediately and recovers within the week.

And the MS people say they have no support....

I am now facing loss of vision whereas my partner has no problem with hers and we were both dx'd with the same thing. Is that fair? I think not.

 

[Blame]

Alone

Thank you both for sharing

mcintyre said

Despite all of this (which makes me sound a right useless idiot!)

I am trying not to judge myself with the same level of ignorance that I have been judged. I'm not ignorant because I have lived this. It is really difficult when you are subjected to repeated verbal and sometimes physical attacks that have no rationality or scientific basis, by people who are presumed to be caring, rational and impartial.

I am not dependent, disordered or self harming. I am intelligent and quite rational. Yet, medicine has tried to force me into adopting a label and accepting negative and bigotted judgements because the authority must always remain with the professional.

I feel so frightened of developing physical disease or needing treatment because I don't know what to expect if I present. I may be verbally bereated, physically assaulted and on three occassion I have been sexually assaulted. I can't complain because I'm not believed. They have the perfect excuse. I'm unreliable. I have had to endure some medical problems that could have been treated very easily and simply because I can't be trusted.

It's frightening to know that whatever illness I develop in the future whether it is cancer, a heart condition or diabetes that I have to get on with it without the safety net of healthcare. I have to live with the knowledge that I have to face major health inequalities because I was abused as a child. That is a bitter pill to swallow.

I'm told that I don't trust and that I am the problem, I am offered no tangible explanation for this. I know rationally that the neural circuits that were layed down during my development are faulty. How can psychotherapy change extensive circuits that were layed down before the age of four? When science states that we are not expected to have memory before this age. So, I'm blamed for not helping myself. I'm labelled because I cannot perform the impossible. I'm told I'm irrational and yet I am working within their parameters of scientific knowledge.

But, it is easier to blame and disown a problem than take responsibility for it. Especially, when your skills and understanding are limited and cannot address it. And, when you've been told that your are not allowed to be weak or human. When your not allowed to shake your head and say I don't know. Medicine has created a situation for itself which is equally distressing for patient and practioner because the professional is not allowed to be weak.

I now suffer from PTSD as a direct result of inadequate healthcare. So, I don't present because my brain tells me it's not safe there.

I'm luckier than some, CD has a high incidence of suicide. From experience I know that this is a reflection of the extent of medical bigotry. I contemplated suicide myself because of the hate I have attracted because I was abused. My family and i felt that it may be kinder for me and them if I was to remove the hate from our lives. And, the only way to remove the hate was to remove the problem - me. We eventually decided that this solution was equally problematic as accepting and living.

So, I accept I am hated for being abused. I accept that I cannot receive respectful and dignified help and support. I accept my body. I accept my daily struggle and I am feel so happy that eventally I have found a space where I can talk about all this and be accepted.

Thank you

 

[Chele]

I am so sorry!

I have just started looking on this forum due to my son being diagnosed with CD, and am humbled and saddened by the stories. I fear for my child and his future, and I fear for some of the people who have posted stories. I have never had cause to come across mental health issues before, but I shall certainly be more sympathetic to them now and try to be more supportive!

You are so not alone by what I can see, and this site is as good a place as many to find caring people who can at least listen.

As has previously been noted, things are changing all the time in the medical fields, and the day may come when mental health issues are given the same time and care that physical issues are - but I won't hold my breath. All I can do is hope that as people in the same sort of boat, we can offer what little we can to each other and hope someone somewhere gets something from it.

My thoughts are with you and I hope you find peace - I feel my own problems with this are not so big now!