Functional Neurological Disorder(FND)

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Firstly, I want to wonder out loud why this site does not have an an entry for Functional Neurological Disorder(FND). This is a very real condition which has many manifestations at present but is, essentially, not a "sin bin" for those functional nervous disorders for which GPs or any other health professionals can not find a cause. FND includes pain, weakness, tremors and other neurological symptoms which are very real to to the person feeling them.

I urge anyone who hasn't looked at the FND Hope site to do so. Also, then please watch the Youtube presentation from Dr. Mark Edwards of St George's Hospital dated April 12th 2019. When I watch that, everything he says there makes me feel understood. He talks at length about GPs and health professionals not understanding very real neurological symptoms and how that very lack of understanding causes subsequent dismissal because one has something which doesn't match a list of illnesses previously on record. Sometimes, he says, money is wasted on too many tests when understanding, then rehabilitation would be most appropriate. Also, he talks about how being dismissed as someone with a psychosomatic (an unhelpful word because of the way people generally perceive it to mean nowadays) condition can have damaging effects to the person, their condition, their family and friends perception of what is wrong with them.

Furthermore he wants more understanding from health professionals, more pathways to send people on tailored towards their rehabilitation. He maintains that, in doing so, more money could be saved in the long run.

For myself, I await an interview for an assessment about getting on to a Pain Management Programme which has renowned success in my city. My problem is this: I do have pain and it can be really bad but the other side of thing for me is weakness. When my pain is less my leg and foot often feel like there is insufficient muscle strength to hold it upright. It will feel like it is leaning to the outside. On other days the muscles in the arch of my foot are very weak and virtually unusable. The weakness scares me more than the pain. A pain management programme exists because it is recognised now that people suffer with chronic pain and the stress about that can make it worse. No programme exists called Weakness Management Programme (outside of those programmes for people with MS or Parkinsons or the like). Maybe it should run concurrently with some Pain Management Programmes? Although I am able to walk for limited times and put up with my disturbing symptoms other people with Functional Neurological Disorders can not and sometimes this has been due to an escalation of their symptoms.

At present, unless you live in London, Bristol, Edinburgh and maybe a few other places, and even then your waiting time may be 8 months no-one will help you or even recognise your problem. You may (most likely) be closed off, dismissed.

I wonder how I could get the moderator of this site to please include Functional Neurological Disorder on their list of topics which could be searched?This would be a start. Awareness is a start. This is what Dr Mark Edwards also believes.

Healthunlocked has an access to a health forum site for FND but getting replies and correspondence is much inferior to the Patient website Forums.

Thank you.

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4 Replies

  • Posted

    Thanks for the info. Yes I wish there was more information out there on this diagnosis/ condition. I have had a specialist suggest this but am having a hard time (a) believing it is really what is going on with me (b) getting more info/ discussion. I don't even think everyone agrees on the terminology/ label - so its hard to pinpoint what Drs actually think about such a condition. I will definitely give the youtube link you suggested a watch.

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    • Posted

      Joe,I don't actually have this diagnosis myself. You are right - different health professionals see the term differently, so it is important to get the right information from the right source. You don't want a GP giving you this diagnosis because he can't think of anything else to say or because it is his way of saying it is all in your head. That would be a wrong interpretation. It was originally called Conversion Disorder, I think because it was assumed(wrongly) that you were converting emotional problems into physical symptoms - so that wasn't a good name to keep, but many physicians still use it and it would make me wary. No-one doubts that one's emotional pain can come out physically in for anyone, but if this is used as a way of dismissing any physical help this is wrong.

      Jon Stone is the man who gave it the new name I think. He is excellent too and has Youtube Webinars you can watch.

      As I have gone around in circles and tried everything, including trying to maintain a level of fitness, have been sent from one type of musculoskeletal consultant to another and back again, offered Gabapentin and Pregabalin...and still I don't know exactly what causes my weakness, how much is due to my spine, how much might be due to my foot, how much may be due to internal scar tissue after an op and how much my head has got to do with it. I have felt so painfully alone.

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  • Posted

    I've never heard of this bit for 7 years now I've had like a numb feeling in my lips like I've been to the dentist I get this on and off on my leftside then my leftside begins to feel weak at times and shakey and pins feeling in my left leg and foot for years I've been told its anxiety I'm not sure I understand this diagnosis fnd but could this be what I'm experiencing

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    • Posted

      I do hope you find some answers Deborah. Watch the Youtube I mentioned. I found it soothing. If nothing else it points out the importance of listening to the patient and not pre-judging things according to already known conditions, about keeping an open mind. Hope you can be kind to yourself at the same time as being just a little challenging but only stage by stage....I suppose it is called "pacing", something which is advised for people with FND.

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