Fnd Causes - my personal account can anyone offer their opinion/story?

[Butterfly1315]

Hi

I have been diagnosed with Fnd and first started to have symptoms 5 years ago but have only been diagnosed for a year (due to numerous Doctors not believing me)!

My symptoms started after traumatic birth of my first child. The epidural missed and touched a nerve on my right leg and I had epidural tap for 5 days after with a nauseating headache. I now have a whole myriad of symptoms, all connected to my right side.

I am however worried that something else may be a contributing factor and it's quite hard to find any information or even talk about. When I was younger, late teens/twenties I took recreational drugs like ecstacy and cocaine. I only took them with friends at parties, festivals etc and never had a problem with addiction or anything like that. In hindsight it was obviously an idiotic thing to do and I'd never do anything like that now but it was just like everyone was doing it and there was nothing wrong with it. I acted with a carefree ignorance and invincibility of youth.

It's almost 10 years since I've done anything like that but I can't help but feel like maybe this reckless behavior acted as a precursor for my current condition and has unhinged something.

I have mentioned this to Doctors but they don't have any information so wondered whether anyone here has a similar experience?

Thanks

[Karma74]

Hi my fnd started the very moment a allied health worker rebroke the bones in my right hand only a few weeks after it was broken in a car accident. 16 yrs and counting and still can't get help. My episodes are triggered by alot of things. But after sitting down and really thinking about the mental health side of it, I would say TRUST. I trusted a some one who I thought was going to help me. Now my life is an exhaustive waste management of time.

[Butterfly1315 in reply to Karma74]

Sorry to be hear you have struggled. I am trying to find my team who can help me and have some great professionals (physio etc) but still need to find more. You're right trust is very important. Sending strength

[Karma74 in reply to Butterfly1315]

And to you too with a hug. Wishing you the absolute best.

[210272]

Hi Butterfly1315,

I don't have FND but do have a rare condition and, unfortunately, people with rare conditions often pick up 'functional' labels during our diagnostic odysseys. However I wanted to comment on your previous recreational drug use and am very sorry you haven't been able to find good information about this. It is possible that using these chemicals could weaken our central nervous systems, thereby making us more prone to developing neurological symptoms later in life. However there are lots of people who used recreational drugs far more frequently than you did and for far longer who don't have neurological symptoms. So it may have played a part for you but we can't undo the past and I'm concerned that you might be beating yourself up over it which might not help your state of mind. Rebuilding damaged neural networks can take time (ask anyone who's had a head injury) but, with a good treatment plan and support, we can see improvements.

Since you know your onset trigger - medical error - I am somewhat surprised you've been given a diagnosis of FND. Can I ask what rationale you were given for your diagnosis?

[Butterfly1315 in reply to 210272]

Thanks so much for your reply. My symptoms were gradual and professionals seem reluctant to pin point the blame on the epidural, they think it could also be the psychological trauma of childbirth so I think this is why I am still questioning the real root of my problem and nobody has said you are at B because of A. I know how I felt after the epidural and it was hideous, I felt like I had lost my mind. I have had another child since, no epidural/natural birth so I have something to compare it to and the way I felt in the minutes and days after my first child's birth (who was induced and then epidural) was like nothing I can describe, it was awful. Despite numerous visits to doctors, neurologues etc noone would actually believe me until Aug 20 when my tongue started moving by itself on the right side, after that I had a visible symptom that nobody could deny. Before that I would try to explain different symptoms which I was having but I was always dismissed as a stressed new mum. After diagnosis I learnt all of the relevant vocabulary 'drop attacks' 'dystonia' 'muscle spasms/tremors' 'light sensitivity' but before that I couldn't really communicate what was happening. I knew deep down it was all connected but Doctors failed to join the dots. It was only after diagnosis that I realised it was nervous system related which makes total sense to me now as all my symptoms are global but I was sure I had MS or something neurological (MRI scan came back normal).

You are right, I am holding myself accountable as I feel I neglected myself and acted very irresponsibly when younger and healthier and am now paying the price.

Thanks for responding I really appreciate it

[Koalaas in reply to Butterfly1315]

As you are female and a new mum it's not uncommon for doctors to dismiss it as emotional, lack of symptoms or "stress". This is not in anyway a character flaw and it's not uncommon to have difficulty explaining to someone your symptoms with FND, never mind thing straight for more than 5 minutes. It's hard to tell what triggered it. I've been through something slightly similar. Had a major surgery which was a disaster. Complications, pain, trauma ( physical and mental) almost died. Developed allergies to everything I ate afterwards and struggled with my mental health, anyways who knows if the medication caused my body to no longer be healthy or the trauma or both. Please don't blame yourself. It's pointless and you can't go back. Also know that you can become really ill from something as simple as too many antibiotic (eg. floxed) from trying to do the right thing. A lot of people who have FND have other conditions, it seems to be as if the body adapts , finds a dysfunctional way to cope/survive. Be kind to yourself ( and a little more selfish), it's a lot to process and go through when you don't feel heard or believed for so long and then have to cope with the unpredicatble FND symptoms.

( In my case I personally I don't think knowing what triggered it would necessarily solve the problem because I can't change what happened) There's so much about FND that we just don't know. There are studies about "coping genes" that explain why some people are able to cope with things like PTSD better than others. ( they don't experience high cortisol levels).It's not all effort based. Take care

[210272 in reply to Butterfly1315]

It's totally not your fault you had fun when you were younger and if you hold yourself accountable or feel bad, that's unlikely to help you to heal. Given that there is now a lot of discussion about some of these drugs being used as medications for depression, I think they can be OK and also help open our minds to different experiences.

Yes, drs are often reluctant to point to causes when they are medical errors but the way you described your symptoms after the epidural should have been factored in. I don't think there's ever an easy A to B line with neuro stuff, more of a 'perfect storm' of lots of different factors playing a part.

Ugh, that dismissal of female patients is no fun at all and I am immensely impressed that you had the courage to have another child.

Normal MRIs are common even amongst people with neurological conditions and don't prove anything. Lack of proof is not proof of lack. Neurologists are told to order them (expecting them to be normal) so that patients and their doctors will believe the FND dx. And doctors are then told not to make the FND dx on the basis of normal test results alone. Confusing, or what?? (Rhetorical question).

Light sensitivity is a big part of migraine (which can also be triggered by giving birth, with or without an epidural) so I would certainly look into a potential migraine diagnosis since there's a lot you can do via diet and exercises once you know where to start. I think it is hugely important to work with people you trust who will take the time to listen and not assume it is all in your mind. If you feel any whiff of patriarchal nonsense (which can come from female medics as much as it can from men) then smile sweetly (behind your mask, if necessary), thank them for their time and move on.

[Butterfly1315 in reply to 210272]

Thankyou so much for taking the time to write this. I really appreciate it, it's so helpful to speak to people and be able to get advice like this. I will definitely be practicing the last note smile and move on! Great advice

Best wishes x

[210272 in reply to Butterfly1315]

Ah, you're welcome Oh and the step after smiling and moving on is to leave a review about the patriarchal stuff, with suggestions regarding how things could have been better. Some doctors are teachable - lots of them, in my experience - others are not but there's no cure for them so there's no point us wasting our time with them.

[LouBL0u]

Hi ButterflyI found watching u tube videos helped me understand FND and the FND Hope website - if you are in the U.K. you can ask to be referred to specialist re- hab as well which helped me a lot. My FND was triggered by a blow to my head.

I had a very experimental teen life that went on for a good 10+ years and I don’t feel there’s any link as I had 30 years after of being super responsible! It’s a difficult condition to understand and since the re-hab I got diagnosed with complex PTSD as well so am now doing EMDR which is also so helpful

So good luck, I had to research and research to start to understand and then advocate hard for treatment but three years on I can write this! Take care 🌼

[Butterfly1315 in reply to LouBL0u]

Thankyou for responding. I haven't watched any You Tube videos yet so will give that a try. I still find it shocking that upon diagnosis we are given the address of a website to look at! But suppose I need to get over that and accept it and move on.

I have found art and music has helped me so have been trying to do as much as possible in my spare time but I haven't really done loads of online research (other than the neurosymptoms website!) so I will give that a try.

Thanks for sharing your story, I feel quite isolated so it's good to speak with people who have had a similar experience.

Wishing you all the very best

[Clarabella47]

I had an epidural 24 yrs ago, I also broke my coxic bone /tail end, and the birth was traumatic , and my son had to be pulled out with clamps because I was so numbed I couldn't push. I have suffered migraines since , I use to just get headaches, not now. The migraines have evolved to hemiplegia migraines that give stroke symptoms, I get migraines for was at a time, all they pain killers iv had to be on, won't have helped either, also had emotional trauma from my past, then, more recently, with stress from studying, and now from having a child on the Autism spectrum, so iv been diagnosed with FND, different triggers make me worse. I think there has been a few factors lead up to me having FND now, it's the signals in your brain not doing the best quality job, I have also read that Migraines scar the brain, so I am surprised my brains still functioning some times. I just have to live with it now. It's very debilitating, it means u have no choice but to give things up. Xx

[Butterfly1315 in reply to Clarabella47]

Thanks so much for your reply and I'm sorry to hear you suffer too. I can relate to much of what you say. My first birth also ended in clamps which caused me gynecological damage and I have had a few life stresses since the birth which has possibly added to my condition. If there is a link between epidurals/stressful births I wish that this was looked into more by specialists. I have mentioned it at every meeting I have but the doctors seem to push towards the psychological trauma where as I feel in my case maybe the physical trauma had the biggest role to play. I too have stroke like symptoms so sympathise with you.It's amazing that you're studying, well done, that alone is a huge achievement. Wishing you all the very best xx

[Clarabella47]

I done an HNC at the time my difficulty started in 2017, it put my in hospital but that's when I studied, I had memory problems so when it came to physiology my brain was burn out and I didn't pass that, so I only got certificates for what I did pass and couldn't graduate which made me mad cause I wanted to apply to Uni to do Nursing. I have however just started an Autism Level 2 course, as my daughter does it, and I do it at home when I can, but after that am done am 48 now, and need to concentrate on my health my my daughters that is my job now. Each day you done know what you will experience with FND, but I just have to manage it. I pray alot because of stuff cause I do believe in healing intervention, and feel sad at the lose of things I can't do properly now, so I try to treat myself more now, although material things aren't everything. I watch long Box sets to keep my mind off negative thinking, and do housework, cooking, and garden, and walking within my limit. I got pneumonia to and was in hospital so its since messed up my breathing and I use an asthma pump. Just take it day to day, and try a wee prayer now and again, we are fragile, Best wishes.

[Abott_the_Spirit_doc]

Interesting that it is only on the rght side it would be helpful if you were to describe YOUR symptoms more concisely instead of using that broad term FND.....what exactly is going on with yoiu

[checkingup]

Hi - It sounds like you are blaming yourself for recreational drug use - but it's sort of interesting to note the drugs at Raves and festivals came out of serious labs where doctors were trying to do work around depression and anxiety. Ketamine, Lyseric acid and more are now being recommended by labs around the world for research into the good they could do. I think if there were a tie in, it would have been offered up by now and I have not heard anything. Hoping you find a bit more that helps you on your journey! Keep sharing!