The Persistent Theme

[K832]

Hi there, I have noticed that there is a persistent theme when reading other people's stories. The theme is that the people treating people with FND somehow believe that CBT is the magical cure (or rather convert back to the dark ages of Conversion Disorder where it was considered hysteria, and caused by someone having a nervous breakdown, thus being caused by an actual event). For many thousands of people this in fact is absolutely not true. People develop FND without having any kind of event or cause. Through my scathing opinion of the medical profession here in Australia (absolute lack of funding for research into treatment programs and my reliance on myself to design my own treatment program) I see this consistent theme of people being treated as hysterical. Or rather people not being treated at all, (as in my own case).

In response to this lack of treatment even though I have written to every single person on all of the Australian lists I found, and even though I am experiencing the worst possible symptoms, I have remained positive, however it really has opened my eyes to how patients are being treated by the medical system and how especially in Australia, the medical system is failing so many people. This, here is largely due to the massive cuts in funding to the Australian Medical Research and Rehabilitation centers, but also if you trace that back is due to the massive cuts in funding to Education. Because researchers come from Universities and universities need funding in order to have the opportunities for researchers. Through research comes new cures and new ways of looking at Conversion Disorder and also comes up with new ways of treating and diagnosing it.

I really feel so sad when I read about another person who is being "fobbed" off by the medical profession because their symptoms are just "way too difficult to figure out".

One thing I have thought about doing is starting a public campaign in Australia to highlight this lack of treatment and to publicize the stories of what patients are experiencing and going through. I did not realize this but I actually do have contacts in the Media. However all of this can only happen if I did not have FND symptoms and therefore only had a tiny window every day in order to function. But it is an idea, and I have seen it work with other Medical disorders (and diseases) in Australia where if media is shone into the darkness, people in high places actually start to do something about it.

[VivienneWaterworth]

Where about in Australia are you? I live in Brisbane, where we have recently discovered a properly designed FND treatment program being run in the Mater Hospital, but requiring a referral to a specialist at the PAH. Several people have also found programs run in other places that have helped get them back on their feet and walking again...using a multi-disciplinary approach.

There is a lively FND Facebook page just for Aussies/NZers where a lot of this information is being discussed and is available from. To join the group, send a private message (Facebook or Messenger) to Chriss Eldau and ask to join. You will need to explain to her two things...which city/town/state you live in, and why you believe you qualify to join (i.e. have or believe you have FND, CD etc.). I look forward to seeing you in that group.

Have you checked out neurosymptoms.org and fndhope.org ? These are the two best websites about FND.

[Tewa in reply to VivienneWaterworth]

Please tell me about the multi-disciplinary approach which is helping people to improve. I was just diagnosed, after over 6 years of seeking answers. I live in the US. In Virginia. Do , finally have a very good neurologist, who acknowledges the limitations of western medicine.

[VivienneWaterworth in reply to Tewa]

I don't know much about the multi-disciplinary approach (other than that they can work really well) as I haven't been involved with one focused on FND/CD. I have attended programs for Chronic Pain. The first one was excellent with a lot of cross-over to FND, but the second one was almost completely focused on Mindfulness, and I didn't find that one any where nearly as good. The first one had physiotherapy, group psychology and individual psychology, and a lot of group sessions about pain and the way the brain interprets it. Fascinating stuff, with good cross over toFND.

I have heard that a number of people have been able to start walking again after attending a program, either in or outpatient at a hospital. These programs usually have physiotherapy, occupational therapy and CBT. CBT can provide good results if it's focused on coping with your current limitations and learning more about what triggers your symptoms and/or what strategies you can use to distract your brain from producing symptoms. Focusing on the past traumas isn't as useful, except when there is a clear link between past traumas and current symptoms. There is for some people, but not all of us.

[Kadaffy]

Thank you for your post...It is the same here in Canada..I've been treated for " Conversion Disorder" for 15 years and it hasn't made a difference...I just keep getting different symptoms with no cause or reason...Maybe I too will reach out to the media here

[sahall]

The UK is little different. I was sent to liaison psychiatry after everyone else gave up on me. I too would like to raise awareness of fnd but cant manage much. What I would like to know is what diiferent type of hospital dept/ consultant people are sent to. Are people being offered anything other than cbt? Are people being treated as hysterical? I certainly feel I have been, particularly when asked by the psychiatric nurse if I had had a happy childhood!!! Sorry if this is not very well phrased but it's one of those days. If you feel you could reply to this message saying what if any medical department is treating you and where you are I would be grateful. I dont do facebook so this seems to be my only channel for trying to get a picture of how this condition is dealt with across the uk and the world.

[jayjay0583 in reply to sahall]

My occupational health dr told me it was just hysteria even though neuro had said it isn't. I'm now a year diagnosed and not getting much support from anyone. Physio and neuro discharged me so I just go gp with anything new and even then I just get brushed off

[Tewa in reply to sahall]

I can remember soon after all of this started for me, being asked "what's going on at home."

I have been treated in Virginia, Maryland, Utah and in Montana ...where the docs are even less aware or even kind.

[VivienneWaterworth in reply to Tewa]

The lady who started FND Hope, the largest charity in the world for this disorder, lives in or near Utah or Montana (I forget exactly where, but real high country). Go to her website fndhope.org for more details. She has been doing a lot of public awareness work, including meeting with doctors who train new doctors at various universities in the US.

There is also a great list of good medical support people at the top of the FNDHope/Conversion disorder Facebook group. There's a link to it on the FNDHope.org website. That group has several thousand people in it from all around the world, so please feel free to post any questions there about the best kinds of support available in various towns and cities around the world...plus any other questions you have.

[Kadaffy]

I went through 60 Neurofeedback sessions to treat my movement disorder..It was experimental and I was the first...IT stopped the movement but since I've suffered from a host of other symptoms such as Aphonia Blepharospasms and chronic pain.

In the future it may be a good treatment but it's still in it's infancy..

[Lindy0421]

I'd definitely take part and support a campaign in Australia. I often think down the same path. I get so angry somedays , that I literally feel like I'm exploding. In saying that, my neurologist is also horrified and annoyed at the lack of research in this cruel disorder. Dr James Leyden has satisfied me somewhat with his attention to detail with FND. His compassion and knowledge just makes me emotional. Took a lot of hunting to find him mind you.

[K832 in reply to Lindy0421]

Are you a member of the Australian Facebook group of FND Hope? If you look up FND hope international on facebook, you can get an invite from the Moderator of the Australian group. Lots of people post information and links and it's very help-ful to know that you are not alone. I actually started a blog series on you tube which I wanted to post to on a regular basis, however due to my condition I have only managed to get one video out so far. Also it is unedited and I simply don't have the energy to figure out how to make it more professional. If you have a hard time finding the Australian group on facebook private message me and I will send you a link!

[VivienneWaterworth in reply to K832]

There are two people in the AUS/NZ group that you mentioned who are really great at finishing off videos. They are both based in Brisbane, Aus. Ask in the group for some help if you would like to see how quickly these two people can get videos done.

[Tewa in reply to Lindy0421]

I hear you. I have been angry, disgusted, scared and at times, feeling hopeless as the search for a diagnosis has been awful! The cruelty of the uninformed and misinformed drs, especially neurologists has left me feeling like I have been beaten up after leaving their offices. Have a good neurologist now.

[Tewa]

I would like to do the same thing here in the US as you have suggested. My neurologist has even suggested this for me to explore.

[DermoFND]

My experience in the UK recently has been good. This may of course be pure luck in terms of the professionals I met. I live in the quite liberal and cosmopolitan city of Bristol. My first two visits to the surgery were fruitless in that I was checked for diabetes and some bloods were taken with no outcome or recommendation. But then a South African GP began to suspect (this was the first time I had seen him and it was pure chance) but didn't let on until my fourth visit - by which time I was in quite a state. Then everything moved quickly. The neurologist backed up the GPs opinion that it was FND with a report that somehow, in it's introduction, indicated that mine was a genuine case. Usually they would wait a few months to see if there is an improvement, or even total remission, post diagnosis but they offered to put me forward for Neuropsychology straight away. I will be seeing someone with a special interest in FND apparently. First indication is that the wait will only be 2 to 3 months. With the current state of the NHS that is very good, I believe. I should say that the MRI was covered by my private insurance but now they have classed my condition as chronic and all other treatment is not covered.... several expletives would be appropriate here.

Anyway, I am not disagreeing with anything you say K832, just that it seems that there is a shift in understanding and approach here at least. According to Jon Stone (of Neurosysmtoms.org) the U.S. isn't far behind. Next stop is surely Australia, New Zealand, Canada, Ireland et al. (overly simplistic maybe, but overall likely).

As for funding, I don't know about what has happened in Australia, especially with a strong economy, but the research doesn't actually have to happen there. The recognition, change of view, adoption of new methods can all be taken up.

I do feel however that what you say about developing our own treatment plan is still largely true and necessary with this condition. I know the NHS can only do so much for me - they just don't have enough answers yet and it could be a long wait for those answers. Plus they are often very slow to take on new developments until huge studies have been done.