Diagnosed with Conversion Disorder
Ive been on this journery since 6 weeks into my pregnancy with my daughter, so nearly 3 years. Ive suffered from impaired mobility, weakness, loss of sensation aswell as extreme pain, tingling, cracking on my pelvis, etc etc etc. Been sent from doctor to doctor, been told its "all in my head". Ive had rheumatologists, neurologists, emg's, mri's, you name it. Nobody could find the reason for it and in the mean time im left with legs that dont work, in pain all the time and on crutches.
Then i was refered to a neuro-phychiatrist who mentioned conversion disorder. He refered me to physio and pain clinic, asked for more tests to be conducted. Today i saw him again and he said all the tests have been exhausted. They cannot find a reason for whats wrong with me and he is convinced its Conversion Disorder. He said with my background and dificult life, the lack of physical evidence from tests, this is it. Wether i like it or not, and ive been fighting this possibility all the time.
I argued with him, told him how can stuff from my past make my legs go grey and cold, my arms go numbs, make me be in pain for 3 years, make my legs go like someone who had been on a wheelchair for extended periods of time? He simply replied that CD can account for all that. That someone cannot go throught my life and come out normal and without any kinds of mental issues. That i cannot go through my life and sit there and talk about it as if im telling him i went to the shop and bought coffee. That havent processed it, dealt with it, that for 30 years it hasnt stopped and my body doesnt know how to deal with it anymore. That all these problems with my body as simply a way to TRY and make it stop.
I dont want to have this. i feel like im crazy. I dont want to sit here and essentially tell myself i have done this, I have put myself on crutches, I have made this pain, I am responsible for all this and i cant stop it, i cant make it go away and i cant get better.
He said was case was chronic, it has been going for too long and i will need the care of a consultant phychiatrist to get over it.
I feel sick, i dont know wether to believe it either. Its almost like they cant find the reason so lets put her in this category and that will be it.
I need help.
Dont worry. There are some very useful sites that you can visit...it will mean trailing through the past posts on here tho as i cant remember what they are. Google up some stuff to read too.
I was in your shoes as are most people that eventually get this diagnosis.
Go read what you can and then pop back to chat... i know its very scary.
Sorry to hear of what you're going through. Especially as you have a young child to care for.
Don't know if I can help but I'll try. Whether or not you have CD, that's the diagnosis for now & what's brought you here, so let's deal with that. No-one wants to believe they have CD because we're told it's all in the mind. It's not in the mind. It's changes taking place in the brain that affect sensory & motor functions. Few doctors take time to explain this compassionately & in detail & re-assure their patients that they'll organise a multi-team care plan to assist recovery.
Doctors in general are not clued up on CD so they tend to believe Freud's theory & old-fashioned Neurologists & Psychiatrists thinking that it's all in the mind, a psychiatric disorder. Hence they discourage thorough medical testing & treatment/rehabilitation & encourage instead, psychiatric consultation, anti-depressants, counselling & CBT as the panacea for CD.
That's why it's good that you've had extensive tests, (probably because you were pregnant) & been referred to Physio as that may help. Not sure about pain clinics for CD but worth a try to see if it helps ease the pain.
There's more than enough evidence now that CD isn't all in the mind. Your Neuropsychiatrist should've explained the neurophysiology of ConversionDisorder to you so that you don't torture yourself with thoughts that you caused your illness. You didn't.
Seems to me they're failing to accept, that while CD may be triggered by an event or a past trauma for some, for others this isn't the case. It just happens out of the blue. Either way, it's devastating for anyone it happens to & the last thing they need is to be made to feel guilty, responsible, confused & in denial. You haven't failed yourself or caused your symptoms. Don't allow anyone the power to make you feel that way. Especially as it can exacerbate symptoms by adding stress to an already stressful condition.
My personal opinion, is that some people may be more pre-disposed to an onset of Conversion Disorder. My son's CD, for instance, was triggered by a traumatic event but he's more pre-disposed to it because he has a head injury from birth, has learning & other disabilities & gets anxious easily.
He suffers no end of sensory & motor symptoms. Getting ice-cold from his feet & spreading throughout his body is one of them. Numbness, tingling, pain, dizziness, all sorts.
It breaks my heart but I have to stay focussed to help him through it & you must stay focussed for your child & yourself. I know you know this & believe me, I know it's far from easy to do, but there are ways to make it easier.
Meditation can work wonders when done regularly. It's effects gradually become stronger & you'll notice changes in how you deal with life's day to day.
You can buy CD's that help guide you through the process. An ordinary relaxation CD will help if you're not into meditation because a good one will get you to that same space that meditation does by getting your brainwaves into the alpha state.
Don't know how much you know about these things, so I won't elaborate unless you ask me to.
Hypnotherapy CD's are also good, as is a good Hypnotherapist. Again I can recommend if needs be.
Cranio-Sacral Therapy is also worth looking into.
Last but not least of remedies. Music & Comedy to uplift your spirits when needed. If you can get to a live concert once in a while, those good endorphins will flood your body with their healing powers for at least a few days after the event.
I take my son to a concert a few times a year. Love to see the look on his face & his excitement at seeing the musicians & singers he loves.
Lastly, remember that the medical professionals who deal with CD via old-fashioned & disproven theories are ignorant so you must educate yourself & if necessary, present them with recent findings which are posted on this forum.
The forward thinking Neuro's will admit CD is an enigma, they know little about it & want funding to further their research. They know this is the way forward towards adequate & appropriate treatment & ultimately, a cure.
Hope this helps. PM me if you need or want to.
Thank you for your replies. I hav read them, will re-read them again when im feeling a bit better and absorb that info. I may ask questions in a couple of days. I just had a hand operation for carpal tunnel and am in agony. I came out smilling though, first time i actually got a diagnosis, had treatment and they found the problem and fixed it. Hurray!!
Just need to rest for now and ill go through the forum when im a bit fitter. Thanks again for taking the time to post for me.
Hasn't the opportunity arisen for you to ask for more tests to be done? Or have they said the same nonsense to you like they have to me? "But all the tests that can be done, have been done". < What a load of cow poop. As for the kinds of tests I am talking about they are further scans not only of your head area but of your neck and spine. Maybe even a lumbar puncture test is you are confident and pushy enough to badger them into putting you in for that. Then after all those tests have come back negative then you actually might have what the Doctors and Neurologists say that you have.
Good Luck. (I think you are going to need it from what you have said). *roll eyes* Doctors....*sigh*
I have a diagnosis of neurological and dissosiative functional disorder.
There is lots of info on
I've found that really helpful some of the personal stories were very similar to mine.
I've also got a book called...... Overcoming functional neurological symptoms ( they also have a website) book is written by professor Christopher Williams and a few other doctors, it's very easily explained and it's a workbook too was less than £10.
I hope you can find some useful stuff.