Lived Experience Forum

[Shaz51]

hello @Angels333  and sending you tender hugs my friend 

@mumto2  is a carer of her daughter who has FND

I will also tag you to her thread xx

@Former-Member, @Rhye , @cloudcore 

[Shaz51]

@baddo 

[Rhye]

Hello again @Angels333 

That's no problem at all. Trauma can be quite the chameleon at times and surprise us with symptoms we never knew possible! I'm glad to hear you're feeling a little better today, and that @Former-Member is reaching out to see how you're going with everything. 

Rhye

[Shaz51]

@Angels333 my awesome strong sister 

How are you tonight xx 

[HenryX]

Hello @Angels333 

I have seen your comments on the forum recently. I did look at the following website in order to find out what FND/Conversion disorder is and the outward expressions that are experienced by people having FND. https://rarediseases.org/rare-diseases/fnd/

The issues that I face are more to do with compromised nerve pathways through the spinal column, between head, and legs and feet. This has a seriously negative impact on stability and balance. I am concerned that I am not doing enough physical exercise and am overweight. I would like to lose 20 kg at least. A number of things have influenced my weight issue, including medication, dealing or not with depression, lack of sufficient exercise, etc. I don't seem to have the types of seizures that you have described. However, I live on my own. While that means that there is less pressure on me to maintain a standard that I would at least expect of myself for any other person with whom I might live, it means that there is little pressure and consequently things that should be done are often left undone.

Recently, I was working with a friend on re-erection of a fence. The best way that I could contribute was to be on knees with one arm supporting and the other grubbing out the broken stone and concrete, from the old fence that had blown over in a cyclone, that my friend was breaking up with a jack-hammer. Consequently, I am familiar with the "being on all four" to be able to accomplish some tasks.

Another aspect of the situation that I am in is that I can see myself falling increasingly behind in getting the everyday type household tasks addressed and completed. This adds further distress to an already distressing situation.

Because of possible complications, with medication that I take, and an awareness of the likely prospect that I would turn alcohol use into abuse, I have managed to avoid that issue for which I consider myself very fortunate.

A few months ago, after at least 15 yrs, I established contact with a counsellor because of my increasing concern about my circumstances that were further exacerbated by the effects of the cyclone that passed through this area earlier this year. As a result of our discussions, I am becoming more aware and able to consider and address issues that were initially generated in my childhood and teenage years. Some of these unresolved issues have had significant negative impact on my life in various ways. In this respect, the situation you have described does "ring a few bells with me", and I can see some correlations between issues in my life and what you've described.

The description of the issues that I face and am trying to address may or may not connect with you and your situation. However, certainly from my point of view, and hopefully from yours, there may be connections that, by discussion, can lead us to a better understanding of ourselves, our situations and hopefully, some answers to at least some of the questions in our minds.

With My Best Wishes

@HenryX 

[Angels333]

@HenryX   I feel for you, do you have a neurologist?   I'm sorry, I'm too tired to respond, I'm exhausted 

ANGELS333 

[HenryX]

Hello @Angels333 

The note that I wrote earlier was a discussion of issues that we share that may or may not be connected by a category or diagnosis. However we don't need diagnoses to know that we do in fact share similar issues and problems. Though, at this stage there are areas and capacities that I have been fortunate to have been able to retain.

Really, there is no need to apologise. We respond to each other at times when our situations and feelings allow. Thank you for replying to me and to the note that I wrote.

I am over 70 yrs and have had three spinal fusion and laminectomy operations. On the one hand I am still able to drive and hold a few different licences. If I complain too much, I may have to relinquish them. I, thankfully, do not experiences seizures and the stability and balance problems are to do with the compromised nerves in my back. I have an annual driving medical test, that is comprehensive. Fortunately, I do not suffer from vertigo. I just have trouble if I need to change a wheel, which  I can do if I take everything very steady.

I'll look forward to 'talking' with you soon

With Best Wishes

@HenryX 

[PBJ]

Hi @Angels333 

I am not in a wheelchair and do not have seizures, however after my mother died suddenly and having had a stressful job and trauma for many years, my health deteriorated quickly. I had two four day episodes of lying on the floor vomiting and relieving myself, not breathing properly etc etc. I went to the ED the second time and was treated like a weirdo, given an injection which stopped the nausea for an hour and sent home. Since then I have had every medical test under the sun with a final and reluctant diagnosis of FND from the second neurologist. My new GP is amazing and the psych she recommended is amazing too.  I have ongoing symptoms of tremors and jerking. I gave up my career but am finding joy in other parts of life, which is OK if you can afford it, but again it was definitely not a choice. Like you, no one really knows much about it or has negative views. The symptoms are so different for everyone that it is easier to be cynical than supportive. Please, if you feel comfortable, could you tell me what your seizures look like? My episodes were put down to panic attacks….pretty rare for a PA to go for four days.

[tyme]

Welcome to the forums and thank you for posting @PBJ . We absolutely appreciate you sharing your story and providing @Angels333 some insight to their experiences also.

This is the beauty of these forums and we really welcome you. Please feel free to tag me to your posts so that I can personally read and respond. You do this by typing "@" in front of a member's name e.g. @tyme That way, I'll get a notification of your posts.

I look forward to seeing you around on the forums!

[PBJ]

@tyme Thank You!

Also @Angels333  reading some of Gabor Matè s work may help. Reading medical journals is pretty dismissive and depressing.