So, we have been diagnosed with DID since 2007. Our body is 37. There are at least 11+ of us in our system. Its complicated to explain unless you are familiar and we are mostly educating our treatment team as no one in our area specializes in dissociative disorders, just Trauma/EMDR (which doesn't tend to help DID)...so now we are diagnosed with FND which no one in our treatment team knows how to treat that either. We are all learning together. At least they are willing to learn and not one of those "I know everything about DID/FND..."
Is anyone here diagnosed with both DID/FND? We are looking to find/give support to those who understand this complicated dual diagnosis. Also, we are looking for any informational sites on FND that we can read and share with the treatment team as we need to research FND and its relation to DID...if anyone has articles, or websites that'd be great! ty!
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Krystal_System
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The most informative site , headed by the chief guru of FND, Jon Stone, is neuro symptoms.org.uk. Also try St Georges Hosp in London ..you will find videos there. The book Reset and Rewire, (USA) gives practical self help strategies.. better than any live advice received from medics in most cases. FND is a slippery beast, which few medics can pin down, and as patients we can't pin down those few medics who are familiar with it. Happy learning journey...it is a bumpy ride.
I don't have DID but in my experience the best way to mitigate FND symptoms is rest - yeah, I know, impossible when coupled with certain conditions, I'm in an online peer-support group and the general consensus is use spoon theory to best effect so you can have some form of a life rather than constantly battling against symptoms. FND being such a weird one, I need to clarify that the main symptoms two of us are up against was the total body paralysis aspect - and ironically rest was required because we were collapsing from brain overload and or stress.
Guessing DID would be tiring on the system could be why FND has become part of the mix. There's nothing I can take for my symptoms but rest and staying hydrated helps as well as support from friends and family, including physical support as well as keeping an eye out for debilitating signs, to get me somewhere fast to support my body e.g sit in a car
I have many other symptoms, but this one is my main concern.
I'd be interested to know how you found the EMDR, if you wouldn't mind. I don't have symptoms as severe as you, mainly shaking and hypersensitivity to some sounds and touch... barriers enough to a normal life though.
The EMDR wasn't conducive for those with DID. If we weren't plural, it's supposed to work well for trauma, but since DID is a dissociative disorder as is, you just dissociate during the EMDR which prevents it from doing any good.
Unless EMDR treatment is conducted by someone with a great understanding and a lot of years practice - don't go near them. It needs an expert if you have multiple traumas.
Hi, I noticed Shimmyaway has given you lots of resources already. I noticed your diagnosis was recently, can I ask what FND symptom you are experiencing. I know there is one types of dissociative seizures and looking back in history there was thought to be some connection.
Hi. Have gone to DR and cleared all medical reasons for the symptoms: strokes and seizures (apparently called functional dystonia). Also having severe vision problems where it gets tunneled and some object is close and everything around and behind it is blurry and distant. Those are the bigger ones, then there are some smaller indications that its FND. EEG came back normal, and the MRI's normal. We did a neuropsych evaluation and they said its FND.
There was a recent post on here saying that cutting out sugar can reduce the seizures. Another contributor tried it ..and reported it worked, reducing seizures to zero. Bingo!
Before modern drugs epileptic seizures were controlled via a ketogenic diet (no carbs) ..although I know FND seizures are not the same and do not involve extra electrical activity.
They ruled out epileptic and decided the are NES's. Then eventually came to the FND diagnosis. Cutting out sugar though couldn't hurt. Maybe our body will lose some weight....
It might just help, I was diagnosed with NES's... Non-epileptic epilepsy also non-diabetic diabetes, there were other 'non's too but tbh I gave up trying to remember them all - instead I just think of it as a condition that mimics everything else! It's difficult to treat "nons" and difficult to know when I'm 'genuinely' experiencing really damaging conditions... I did eventually become type 2 diabetic, but it's in my family and turned up 9 years after being in the 'non' group and it took me months to decide it was real and get checked out for it.
so, yeah with the body being 11+ it's going to be more challenging to work out what's happening and being able to monitor the weirdnesses of FND in conjunction with DID... I'm only 1, and it keeps me busy every day!
I wish you all the best, you could be the test case for DID's and help others around the world with the support behind you all xxxxx
we would love to help other somehow, esp with DID research. Not sure where to go to hook up with something like that! We would deff keep them occupied (joke, kinda). Thanks for your kind message!
You could keep an eye out for clinical trials .. some for FND are put on FNDHope ..not sure who your medical 'warriors' are for DID... but as you will know much funding for medical research is being withdrawn in the USA. The authors of 'Reset and Rewire' are FND researchers at the children's hospital in Texas and university of Colorado.
You are not the only one for sure ... even the DRs don't understand it ..and some try to shy away from patients with the diagnosis ....but they don't have to live with it! I am sure if you explain where you need help someone on here will provide the info to guide you on your DIY journey...as it sounds as if you have had very little help from the NHS since your diagnosis ..and was that done on the basis of 'rule in ' signs or guesstimated?
Honestly, we need help, but we're not sure even where to start. We are in therapy and a psych medical provider too. Nothing prepared us for the FND....we know next to nothing other than what we find online, and none of our providers have ever seen it, and to my knowledge, neither has anyone else around here. I ordered an FND workbook that someone suggested off Amazon. Maybe that'll help. wdk.
FND is an extremely complex condition, that ,as you have found not all medics have heard of, let alone know how to treat ..and everyone has different symptoms. The ideal scenario is a multi disciplinary team, who assess, and see where most input is needed, whether it is PT, psycho therapeutic, autonomic nervous system, sensory issues. This requires expert know ledge and skills. In the UK most patients cannot hope to have access to such treatment, unless you get to St George's in London,, and it is not available privately either, or only at a very high price ,,and then no guarantee of success. We are dealing with a condition that the Drs themselves only partially understand .Your best hope of info is with Julie Herschberg (IN LA)..loads of stuff on Instagram. She also has satellite clinics ..but I can’t find the USA directory for you. It is not likely that untrained staff not familiar with the condition can treat it.. there is no ‘standard recipe’
In the Uk, consensus guidelines for occupational therapy and physiotherapy have been drawn up ..see links below...but not everybody needs those disciplines . Also a big debate as to whether it should be described as neuropsychiatric and in DSM.
The Reset and Rewire booklet is the best available advice as regards treatment.
Occupational therapy consensus recommendations for FND …
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