Hello!

[Katethegreat]

Hi I'm Kate. I was diagnosed with FNSD in 2014 after a year of testing and thinking I was dying. Having a hard time dealing with this disorder... there are not many doctors that deal with the condition in the state of ny where I live. Could definitely use some tips and suggestions. Thanks!😁😁😁

[nurmihusa]

The more you learn about what is tossed into the big bucket called FND the more you realize how widespread it is. In fact, it is universal. EVERYONE has had episodes (note the plural) that could legitimately be described in terms that would fit the broad characteristics of an FND diagnosis.

That said, not everyone is as debilitated by it as others.

We have all suffered from low or high blood sugar. But not all of us have suffered from it as dramatically as a diabetic. If the medical profession treated diabetics with low blood sugar as it treats us - there would be piles of mysteriously but very dead diabetics.

[Hidden in reply to nurmihusa]

I do sooooo love your phrasing nurmi, it just cracks me up, at least you bring a smile to my face, thank you for that, it is so welcome. Hugs to you. 🤗🤗🤗🤗🤗🤗🤗

[nurmihusa in reply to Hidden]

Thank you, I used to be a writer before all this went pear shaped. A couple of novels. Ah well...we all used to be something else...

[nurmihusa]

So, although we are all tossed into the same bucket our individual experiences with the condition are radically different. How does it affect you?

[Katethegreat in reply to nurmihusa]

Well I was first diagnosed I couldn't come to terms with it. Which made my symptoms worse. I was taken out of work last year and I'm awaiting disability.. thanks to my doctor. Not too happy but it's hard to function. I guess it affects me drastically because I can't find a doctor that is familiar with the condition. And the few I have just want to drug me up and that's it...no answers, no support groups, nothing.

[nurmihusa in reply to Katethegreat]

What kind of drugs, may I ask? The drugs thrown at this are so varied as to have little resemblance to each other.

The only thing they all seem to have in common is that they mask one or another of the symptoms. No cure, just symptom masking...

[Katethegreat in reply to nurmihusa]

I take clonzapam daily for PTSD and panic attacks. My doctor suggested I take topamax and gabapentin for the neuropathy, partial parylsis and seizures but I felt depressed and tired all the time. I had a huge reduction in symptoms though. Also Prednisone was prescribed for movement issues. I guess I'm just frustrated. Like you said masking stuff not fixing it. It's like hell.

[nurmihusa in reply to Katethegreat]

For shutting a seizure down I have benzodiazepines which I use very very sparingly. They work because I limit their deployment. Antihistamines can help also - if the seizure is caught early enough in the wind up.

[Katethegreat in reply to nurmihusa]

They prescribed gabapentin and topirimate for the seizures but I'm like a zombie so I refuse to take them. Am I an idiot? Lol I just hate this so much. I take benzos daily for PTSD but it's hurting my nervous system even more...ideas?

[nurmihusa in reply to Katethegreat]

Pharma is necessary when nothing else works. But docs are very unreliable about prescribing things that actually help.

[nurmihusa in reply to Katethegreat]

Docs are thrilled to give you therapies that aren't much good because those therapies are safer for them to prescribe.

[Katethegreat in reply to nurmihusa]

That's definitely true. I'm just wondering if I should finally give in and take the damn meds they want So I can slowly get off my Klonopin..

[nurmihusa in reply to Katethegreat]

There are folks around here who have had experience with gabapentin. I have not.

[Hidden in reply to nurmihusa]

Gabapentin is cheap and is given to a lot of people in the U.K. Displaying any symptoms related to the drug. I had pregabalin along with many other pain meds after my accident.Coming off pregabalin I literally afyervweek 7 of withdrawal wanted to jump out a window, it was like when you watch trainspottting the movie and Renton is going through his heroin withdrawal I did that without gp help. They refused to come out and I even called and said today is going to be my last day on earth in not so nice words and they still ignored me and I know that's illegal.

Had to take myself to hospital then a new gp who were horrified I'd went through that alone.

Not only bad neuros out there but GPs who know the physical risks of withdrawing from a drug and ignore you anyway.

[nurmihusa in reply to Hidden]

That happens in the u.s. As well... FROWN!

[Hidden in reply to nurmihusa]

I was really lucky as just by chance a city council managercalled to see how I was. I told her how sick I was, couldn't stand, hadn't eaten in 5 weeks she sent yonif her supervisors round and they did a grocery shop for me and got me cat food. Was too weak to walk doenstsirs and it was a few weeks til xmas.

Used to love xmas, went all out with my tree overseas, haven't botheredsince I came back.

Lucky I got those girls though, they bought me my baby foods Iv talked about before so I think xmas was a yoghurt but at least my cats got fed.

Never touchingdodgy drug again. No what works and what doesn't.

[Hidden in reply to nurmihusa]

Excuse bad spelling. Still recovering from trip. Just wanted to put a nice post up about it rather than here are all the symptoms I had from travellingand doing to much and here are the bruises I have from falling or the finger I nearly lost on my flight home as I fell asleep and my hands swelled up so much I spent 3 hours with hand with ring welded in there in a bag of ice then 2 hospital trips still with my cases and 2 ortho docs saying - you are seriouslyabout to lose this finger. It had been 9 hours? Now and me breathing on entonox saying you better get it off then

[nurmihusa in reply to Katethegreat]

The thing is, we need a big grab bag of coping mechanisms, therapies, supplements and pharma to be able to manage the condition. If there was one thing that worked for all of us, we wouldn't be here.

What's clear to me is that the condition is heterogeneous (arises from many different causes) and is a comorbidity (you have more than one serious illness going on at once).

What is also clear is that stress - both conscious and, worse, unconscious - is a principal driver for the debilitating manifestations of the condition. Whatever we can do that minimizes or eliminates (PLEASE!!!) stressors is key to successfully managing the condition.

[nurmihusa in reply to nurmihusa]

If sitting in a dark room, dowsing yourself with rose water, listening to early Patsy Cline, surrounded by vanilla scented candles while having you feet massaged works to lower your stress, then do that!

[Hidden]

KatetheGreat

Dan from Seattle.

Sounds like you are venturing up the knowledge curve quickly.

As usual, my friends here succinctly lay out the working theories on this disease.

Some days will be better than others and some things work better than others to help us cope.

What we know is something is wrong in our bodies (and yes that includes our brains) but we are not accepting of this being called or treated as a psychiatric illness.

Medical providers in USA are by and large lost as a group about what to do with us as patients. So we get tagged with a label that says "simply unknown."

Not a pretty place to be I can assure you.

I classify my condition as chronic and serious with progressive decline. The doctors simply do not know what to do.

Meds have their place in my world but I left the realm of psychiatric meds over two decades ago.

Research and reading and listening to what others on this community go through has become my mainstay.

Medical tests (nowadays) only confirm what I already knew to be happening.

Take control of it best you can and find out what combination helps you the most.

Always here to listen and share. Thank you for reaching out to us. There is a wealth of knowledge and experience available.

And the compassion and caring are just unsurpassed. I love my community friends.

Dan / Seattle

[Katethegreat in reply to Hidden]

Thanks so much Dan. I completely agree with you on so many levels. I'm just at my wit's end because I don't want to be labeled and given a bunch of psych meds just for them (the doctors) to not even know what this is lol it's literally madness. No one understands it but the people experiencing it in my opinion. It's too complex. I will definitely utilize this site. Thanks again! And God bless you.

[Hidden in reply to Katethegreat]

KatetheGreat

Actually, I agree with you. You seem highly intelligent and able to sort out the bull in all of this with great decision making.

My cardinal rule is never question what others are going through and never bias your own thoughts by assuming my experience will apply to you.

Do what you think is right. There is no scientific grounding for the diagnosis you have been given. It only says that medicine does not know.

Like you, I am one who has neuropathy. Pay attention to how the nervous system is designed to function and what it is telling you when it dysfunctions as in the case of neuropathy and paralysis.

It will save you much grief as you start thinking about disease as organic vs. inorganic.

Docs run from the inorganic stuff.

Great day and hope you feel better.

Dan / Seattle

[Hidden]

Hi Kate, I too found majority of medication given hasn't made me better in fact the opposite, only through my partner reading the side effects and talking to a pharmacist got me off them. I get side effects within 24 hours even rare ones but my then doctor called me a liar and said that can't happen. I've changed doctors but my new doctor admitted he had never heard of FND but was willing to learn with me. Apparently there are professionals out there also in NHS that can help me with my sleep disorder. Chronic pain management that don't rely on medication, unfortunately I am still waiting for a letter from hospital to get my dr to access these for me. The ladies who I saw at London hospital were very surprised 😳 I had neither heard of these or been offered them. Sounds normal to me now though. The negativity from most professionals is truly outstanding in our world of FND. Welcome to this fantastic website who are truly like family and sooooo understanding and helping. It's great knowing there are others suffering but know what you are going through, that hasn't come out right but I hope you know what I mean. Best wishes Lisa. 🤗

[Hidden]

Id report your doc who called you a liar to the general medical council.

I guess that docs are now not just medically trained with degrees but actually I guess through some sort of virtual reality program see how you are reacting physiologically to your condition and medications 😬