Hi all not been in here for quite some time not been to bad kind off in remission.About 2 months ago after the 4th funeral in 18 months I have spiralled down rapidly with a multitude of lovely symptoms.
The main being what I call a migraine in my bones (I am sure some of you will know what I mean)
After a 3rd visit to the NHS hotel with the usual it's all in your mind mate and having a laugh at my expense they pumped me up with morphine again with little to no effect yet again and sent me away.
My question is do any of you use Fentanyl patches
Are they available in the UK
And do they work
Would be very grateful for any feedback thanks in advance Richard.
Hi, sorry to here you are out of remission and suffering again and for.your losses.Can you explain what a migrane in your bones is? Never heard of that before.
I found my body absorbed the patches far too quickly leaving me out of it for the first few days and then withdrawing for the rest of the week feeling ghastly. That migrane in your bones feeling I know only too well but find it was always worse on certain drugs. So if on morphine if I’d missed a dose or on the patches as above that bone pain plus joint pain was truly horrific. My FND is complicated by a broken back so sadly all the normal FND medications did nothing for me and the only thing that touches the pain is a mix of SR OxyContin and Oramorph for break through pain, without both of those I’d be stuffed!!!!!
Ugh - I guess (as with other relapse/remission conditions) remission can be a two edged sword for people with FND too and I'm sorry to hear you're experiencing symptoms again. I know very little about medications for FND symptoms and would always advise asking your GP or pharmacist which meds are likely to perform best for you (on the basis of robust clinical trials).
Meanwhile I am appalled that anyone would have a laugh at your expense - that's just plain wrong. Sometimes I wonder why some people decide to work in healthcare and then decide to be horrible to people who seek healthcare.
I guess its that they don't have the knowledge so can't add anything useful, something that needs to change and soon but ignorance is no excuse to be cruel.
It happens so often (FND Portal reports that people with a FND dx experience scorn in medical settings and can, understandably, become traumatised as a result) and it needs to stop. There's no excuse for it and never has been. No wonder FND is described as a 'crisis in neurology' nowadays.
Yep and many people can develop medically induced PTSD (aka 'a sane response to an insane situation') as a result. Sometimes it's due to medical gaslighting and other forms of iatrogenic harm. But whatever the cause is, it needs to stop and the 'clinician, heal thyself' deal doesn't seem to be working so interventions may be necessary, as they can be for people who abuse substances rather than other people.
When I need to get answers or advice, I usually check here first and I end up reading posts over 5 years ago and read other posts from people that have had symptoms for decades and I wonder had their initial contact and actual support received been different, would the outcome have been different.
From my perspective getting help and the correct support is key.
I have medically induced PTSD (diagnosed by a psychiatrist) because of the way I was treated at the hospital - they repeatedly used different pain stimulating techniques on me for several hours to try to get me to talk and move. When I cried, the nurse snapped " what are you crying for". I was in the hallway of the ER for 24 hours, with no sleep or food. They changed my diaper right there, with staff, visitors, whoever walking by. If they were trying to humiliate me, it worked. Still couldn't move or talk though, so they tried to get a psychiatrist to certify me. Luckily, she refused! I don't know how to stop this - I'm clearly not unique because an ER doctor in the FND Society did a whole one-hour webinar on "not torturing FND patients in the ER". So at least he gets it, and is trying to help.
Van604 - my blood is boiling (and running cold) on your behalf too. No one should be humiliated in that way, no matter how busy and ER department is on any given day or night. Do you have a link to that webinar, please?
I conceptualise medically induced PTSD (which I have too) as 'a sane response to an insane situation' and the psychotherapist who got me through the worst of it (for free, bless him) said I'd never be fully cured since it's still happening to other people far, far too often.
Here's hoping 2024 brings you doctors you can trust and the care and support you need and deserve.
Thanks, Van604. I'm not a member but may join eventually. Given all you've been through I think it could be worth contacting your local FND Hope group (are you in the UK?) regarding your initial diagnosis and how you feel about the FND dx being in your notes. You have human rights and, currently, they don't seem to be being met which is not OK. I know it can take a lot of energy to get these issues sorted out and hopefully the Hope group people will be able to help and support you through this process.
Lady4 I agree (edited to say this refers to your point about proper care and support from the start) and if you google 'the economic costs of FND' (and listen to the podcast that accompanied it, prior to publication) it becomes clear that a well delivered diagnosis of FND can make a huge and positive difference both to quality of life and costs for patients and health care systems, along with the added advantage of potential investment into care pathways for people with FND. However a badly delivered one (eg when people are told to 'google it' when they ask for further information about this condition) can be disastrous, especially if it leads to a loss of trust in the medical profession to the point where people don't want to interact with doctors, no matter how unwell they feel either with symptoms related to FND or with other symptoms that are not.
Genetic Alliance UK have a really good 'good diagnosis guide' and although it was created for people with less common/rare conditions (some people say FND is rare, others say it's common - who knows??) if it is applied to the dx of FND, outcomes may improve.
Absolutely, read the whole report and for those members that struggle to concentrate for long periods of time due to their symptoms, have attached some screenshots:
Thanks, Lady4 and apologies for the delay in responding. I went (virtually) to one of the workshops held after the publication of this guide and found myself advocating more for people with a FND dx than I did for people with the rare condition I had. This was mostly because I'd heard several reports of 'wastebasket' FND diagnoses eg where normal test results alone were used to determine this dx and/or where people were diagnosed and then promptly discharged without any rationale for the dx being given and without any treatment plan being offered and/or where people were diagnosed during very brief consultations and, when they asked for further information about this condition, were told to 'google it'.
I asked if anyone with a FND dx had signed up for any of these workshops (which they might not have done since FND isn't always considered to be a rare condition) but the organisers didn't seem to know although they were suitably concerned about the poor quality of the diagnostic process for FND and the difficulties involved with accessing good quality information about it. Time was, understandably, limited so I didn't have the chance to raise my concerns about the 'territorial expansion' claim commentary from Kanaan (who has been diagnosed as a Freudian by some people with FND) which accompanied the FND subtypes paper) but my feeling is that the neurologists concerned (mostly men) need to put their own house in order before any other patient groups (eg people with audiovestibular/visual conditions) get subjected to similar shoddy practices regarding diagnosis and categorisation (IE via DSM).
IE stands for 'that is'. It feels wrong that emotional damage attaches to these diagnoses and one of my fb friends who works in a pain clinic has indicated that FN(C)D seems to be the dx 'de jour' (she's not happy about that and neither am I).
Yes 'go to dx' works as a meaning. Literally 'de jour' means 'of the day' and we might also say that it is 'trending' although not in a good way, in my opinion. I'm not sure what you mean by 'structural via psychological'.
Yes, they do. Ah, do you mean 'structural versus functional'? As in 'a change in function, not structure' (which is how the North Bristol Trust describes FND). If so, it just adds to the confusion when Jon Stone states that the opposite of 'functional' is 'structural' because it isn't. Plus it's a bit of a leap of logic for neurologists to assume that if there's no observed change in structure, the condition must be psychiatric in origin.
I think I recalled it mentioned in one of the "diagnosing FND" podcasts you shared and on some of my many notes (somewhere) and yes I probably got it wrong, apologises.
Lady4, you never, ever need to apologise to me x You are doing an awesome job under very difficult circumstances and I wholeheartedly commend you for that.
And to try and even attempt calming techniques (I am guessing) to help speech in a busy corridor is absurd. They should have admitted you correctly, used curtains for privacy and then got the "stroke" specialists to exam you, I would think.
Unfortunately, these were not calming techniques. They are pain stimulus techniques used to assess consciousness en.m.wikipedia.org/wiki/Pai... only one needs to be done for that purpose. The ER doctor did a sternal rub and sent me back to the waiting room with the paramedic. Once there, the paramedic told her colleague "I think this is behavioral" and gave me a viscious trapezium pinch which left a nasty bruise. When I was taken back into the ER, the nurse dug her pen into my fingernails and toenails. Then shouted at me when I cried from the pain. They think we are fakes and time-wasters so seem to believe this type of behaviour is justified. BTW, this kind of thing only happens when I'm alone at the hospital. I now tell everyone in advance never to leave me alone.
I struggled to add the screenshots, so am adding another here. If they treat FND as a rare disease all of the Framework and all of the recommendations should be adhered to. Perhaps this could be addressed within our legal rights and we could highlight it to the professionals.
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Hi guys update that i promised
Nervous about interviews jobs.
Hoping to find support
What sort of symptoms do you have?
