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Recently while doing some research on EDS, I ran across this interesting article:
Problems with diagnosing conversion disorder in response to variable and unusual symptoms
Having a background in psychology, I am familiar with conversion disorder (CD), but I never thought someone with EDS could be labeled with it. The case study presented involves an 8-year-old girl whom doctors suspected of purposely dislocating her joints. It was not this suspicion that prompted the CD “diagnosis” but the seizures she started having. After all, in order to get labeled with CD, the patient must not be consciously producing the symptoms.
Dr. Richard Barnum, a psychiatrist and author of the article, effectively reveals the problems with labeling patients with CD and goes on to conclude that “there is probably no value in suggesting to either the patient or the mental health practitioner that the patient has CD.”
I have never had the misfortune of getting the CD label despite having a frighteningly complex medical history, but if any future doctor ever hints at it, I will be well equipped with Dr. Barnum’s article.
For those of you interested in this subject, Dr. Barnum also presented at the 2013 TCAPP Think Tank in 2013.
I’m in the UK and have been diagnosed with FND (Functional Neurological Disorder) which has all but replaced the term Conversion Disorder here. I have Chronic Fatigue with it and only just in the last month have been noticed to be hypermobile, which led me to finding out about EDS….something which ticks a scary number of boxes for me.
I’m due to see my GP soon and explore the possibility of EDS. Interestingly, quite a few people on the private Facebook forum of http://www.fndhope.org have stepped forward saying that yes, they are hypermobile or indeed have EDS!
I’ve so many symptoms and things like, I think, undiagnosed dysautonomia (I am almost constantly dizzy and gets worse on standing, heart randomly beats fast….so many things going on!)
I’m looking for clarity. I was convinced I had MS until my MRI came back ‘within normal limits’ but am still not entirely convinced that has been ruled out (clear VEP but no LP). Help?!
Hi Skylark and welcome! I don’t think you (and Mogthedog) are alone in being diagnosed with a conversion disorder, as you have found. This is a diagnosis of exclusion, meaning all other physical causes need to be ruled out first. I have no doubt that many people with diagnoses of conversion disorders, somatic disorders, and other psychiatric disorders have an undiagnosed physical problem. We need to keep digging for the causes because once they are found and properly treated, the psychiatric symptoms can go away. As a patient, I think I experienced most every psychiatric symptom out there (yeeks!), yet all have resolved WITHOUT medication typically prescribed for such illnesses. Clearly, we are missing too much. Thanks for joining us!
For the record, I have never been diagnosed with a conversion disorder and would never allow it to be put on my medical records if a doctor ever suggested it to me.
I agree with Dr. Barnum that labeling a patient with “conversion disorder” can be destructive, and I applaud him for summarizing what doctors can do to support patients when no clear diagnosis can be made.
Yes, I hope I live to see the day that we make enough progress in our understanding of the human body that the “psychogenic” label gets permanently relegated to the past.
I so agree, Mog! My undergraduate degree is in psychology, but I opted for optometry instead because it seemed that too much was getting missed as to the MEDICAL causes of these psychiatric conditions. Sadly, people tend to get a diagnosis and then the Rx that is approved for that diagnosis. No one is really looking to see what else could be going on. Can you imagine going to a psychiatrist and they say, “you seem depressed — let’s get an MRI and analysis of inflammation first”? I think it will happen, but not soon enough for me (and it sounds like you, too). 😉
I, as well, did my undergraduate work in psychology and left the field for similar reasons. It may be, in part, why I get so frustrated with the current state of affairs when I read case studies like the one Dr. Barnum shared about the 8-year-old with EDS who was referred to a psychiatrist instead of getting the proper care for her medical condition.
In any event, I am grateful for the passion you bring to the table when it comes to advancing our knowledge of viable strategies for treating people with EDS and all that goes with it.
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