F.n.d sufferer

[andy23269]

Hi all I'm Andy I was diagnosed in 2014 with CFS & CPS this is now upgraded to F.N.D with severe motor disorder. I struggle day to day and hide so much about it especially the mental side of it all. I have tried to end it in the past and still self harm because of this condition. Not only about the pain I'm in but everything else like siezures, symptoms like stroke, severe migrains, and paralysis in parts of my body. I just wish I could get a sense of control over it. People have talked about a Dr stone or Dr Edwards to try and see them but I'm reluctant as I've seen so many and been told so many different things from there's nothing wrong it's in your mind to there's nothing we can do for you.

[LEEJUNFAN]

Hi Andy,

My wife Kim was diagnosed with FND in 2012, aged 34 and lost her job along with many of the everyday things she enjoyed doing that we always take for granted.

She goes through many emotional ups and downs, as everyone on here does with FND, so we appreciate and respect how you feel.

If you want to email or wish for any help, even just to get things off your chest, then please reply and we'll do all we can.

Sending you prayers and wishing you a good day.

Best Wishes!

Tony and Kim xx

[andy23269 in reply to LEEJUNFAN]

Hi Tony

Thank you for the message back I can say that I've now got help from wellbeing services as well as crisis team who have helped me so much as it wasn't just the F.n.d i had PTSD last year after finding a friend dead in his house and thought I had it under control but I realized I didn't but thank you again and I will email if I need to talk

[LEEJUNFAN in reply to andy23269]

Hi Andy,

Glad to hear that you're getting help and do contact me any time.

Best Wishes

Tony and Kim xx

[Ashbutterfly]

Hi Andy,

I can personally appreciate this struggle. I was diagnosed with FND, 9 months after a head injury, triggering a lot of scary symptoms.

Gait disturbance, Vision Loss, Speach Loss, etc...

I have found that pacing helps. You have to try to do some exercise..What ever it is, just do it. it breaks the encapsulating bubble that you're stuck in with FND and makes you more alive. I highly recommend joining a David Lloyd as the people are very supportive. You need a support system and a positive mindset. It will take time but you can heal.

Best Wishes

Ashley

[pickleweed]

You may want to try the app called "WoeBot." It does free cognitive behavioral therapy, by a computer program! Among the things that it does is that it teaches a person to avoid all-or-nothing thinking. So if a person has a bad day, that does not mean that all days in the future will be bad.

A good book to buy and listen to is called Functional Neurologic Disorders. It is part of the Handbook of Clinical Neurology. If you buy the Kindle version from Amazon.com, you can listen to the book through the Kindle text-to-speech function on a computer, or through an Amazon Echo Dot or other Echo device.

With CFS, you want to increase your level of activity VERY GRADUALLY, so that your brain determines that that level of activity is safe. You would make micro-increases in activity. Every once in a while it would be normal to have a bad day or bad set of days, but overall you can still make progress. Keep believing that you can get better. You may want to try gentle yoga at home by television, doing the best that you can, even if all you can attempt at are the breathing exercises. The calmness of the instructor and the movements of the instructor may transfer over to you, via your brain.

[SuCouling]

Hi i do not no how long i hav been like this i have bad brane prob altho i veree good 4 1970 to sum 1990 i was a librarian. Yet i now can not spel simpell wirds and my rite side not wirk wiv owt lot of pane. But i am a harf ful pursun. I do wat i can wen i can wich not a lot for most but 1 smal step is a hill dun 4 me. Plus on good syde i neva get tyerd of a doc as not no i seen it. I hav a sun i can not no i had but he is funnee and laff wiv me.

And that is wat u nede 2 do laff wen my pane gets 2 12 and i want to screme i fink y. It will not mache it go just tache myself off listen music tache morphine and wate till i bak below 10. My carer look arfta sun i then get up and start like new day.

Dr stone dr edwards hav good remarks on here but until they live it and i hope they neva do... MS was at first classed as all in mind and know this peple will always say that wen do not understand.

U r ill u do nede help so kepe push 4 it

But do not eva giv up

Su

[SuCouling]

That was doc on tv can not spel wird

[cshubert]

Hi Andy,

I think everyone on this page both understands and empathizes with what you are going through! I have had SO many doctors throw their hands in the air and ship me off to someone else. I am in the states and here we do not have a team of experts like what I read about in the UK. All of my doctors are of the opinion that if they cant see it on a scan or on a blood test, then it must be in my head. (I'm thinking "Of course it's in my head...my brain is broken!")

Over the last 8 years, I have been instructed many times over to see a therapist. I am a logical thinker, so eventually I got to the point where I thought "If all these doctors think my symptoms are psycosymatic, then maybe *I* am the one who's wrong!". So a year and a half ago, I began working with a therapist who I have now developed a great bond and repor with. In the beginning, I was also seeing a psychiatrist, who put me on Zoloft and diagnosed me with OCD anxiety. As I have worked with my therapist, I have learned great coping skills and have even been able to come off the Zolof!

Here's the irony, though. In the year and a half that I've been with my therapist, we have gone through every possible emotional situation and she has stated repeatedly that she does NOT believe my symptoms are not psycosymatic! As we have explored my own personal struggles, we have also considered other possible causes for my FND symptoms. I found that by eliminating certain medications, my symptoms greatly diminished. This comes as no surprise to me, since (as I've told many doctors!) my symptoms first started after beginning these medications (Neurontin and Tramadol in tandom).

My symptoms initially were Fibromyalgia and CFS that began after a physical injury. After 8 months of trying alternatives, they started me on medication...which lead to my FND symptoms. I also have degenerative disk disease and despite 2 back surgeries, continue to have worsening symptoms. It's a combination of diseases and disorders that leaves me, at 38 years old, feeling like an 80 year old woman most days! I have personally found that a special chiropractic technique, called Upper Cervical Adjustments, helps alleviate the majority of the pain of my fibromyalgia! Unfortunately, however, it has not helped my back pain. I do still have the tender points and CFS associated with the fibromyalgia, but they remain diminished as long as I keep up my appointments with the chiropractor.

At this point, my therapy has switched from trying to find an emotional cause to my symptoms to learning how to cope with the emotional pain my symptoms cause! Learning your triggers...for me, fatigue, over doing it, etc...can help with coping. I also know that when there is a major low pressure weather system moving through, I will have a flair up of my arthritic pain. So I try to take it easy on those days.

One of the most important skills that has helped me is learning to switch my mindset from "all or nothing" to "do what you can". In the past, if I couldn't do something all the way or the "right" way, I just refused to do it at all. Now, I do what I can, when I can and give myself permission to tap out when I need to. This keeps me off the sidelines and in the game, even if it's just in a small capacity. This helps with the anxiety and depression that frequently accompany our disorders.

I agree with the getting small amounts of exercise. Even if it's just 5 minutes of yoga or stretching, it will go a long way! Tia chi is another good one. During the summer, I take my kids to our neighborhood pool almost every day. Every hour, they have a 15 minute safety break where the kids have to sit out. I use that time to swim laps. Mind you, it might take me 15 minutes to swim 4 laps because it's so slow, but at least its moving my body! Then I float and relax with my kid in the water afterwards. Little movements every day DO add up!

Acceptance is a difficult place to come to...but it is the place where I have found the most peace. There are still days when I feel angry or sorry for myself, but I just allow myself to feel those feelings and then let them go. Dwelling and hyperfocusing on the negative only breeds more negativity! Know that we have all been in your shoe and you are NOT walking alone!!

-HUGS-

Christy

[DNE92 Moderator FND Hope UK]

I do wonder how much we know about the brain yet It seems for FND nothing. The analogy of a computer and FND being faulty writing does calm you down from dreaded thoughts of fatal degenerative brain diseases. But after multiple visits with neurologist and psychologists with little knowledge changing for you and your family - your symptoms , the need for a chaperone to go out, your symptoms worsened you do come to a point where all the treatment/ research is about the brain eg CBT a way to retrain your brain and it’s neuron-networks I think hey there is another player here - the mind. No I’m going no where near the suggestion it is all in our head - We are NOT crazy. We are desperately ILL I’d just like some more discussion about the mind from all of this. Cheers Lou