Background, Foreground and A Splash of Positivity!

Hi there everyone! I'm new to this circle. For the last two years, I have experienced psychotic and physical/muscular symptoms. I have had MRI's, an EMG, XRAY, been to my PCP, multiple neurologists, a therapist and a psychiatrist. None of them had a clue what to do with me, and made me feel like a handful [I am, but that's not why ] Schizophrenia at one point was contemplated, and diagnosed with Depersonalization/Derealization Disorder, because I could tell what was reality, and what wasn't (seems like a fine, dangerous, and terrifying line if you ask me). As for the physical, spasms all over my body (in my chest, throat and head as well - the worst!), twitches, cramping, lightheadedness (almost blacked out a few times) and a blood pressure that yo-yos every 20 minutes on certain days, paralysis at times, etc. Just learned yesterday that this is called FND - thank you John Hopkins of Greenspring! So happy to hear this is a real thing, and also happier that I can be myself here

[thinkin]

Hi,

Welcome to the other side! There are a list of doctors on the FND Hope site. It sounds like you are in the US, there are a few out there too. It's all quite new in medical terms and there is on going research happening, but a lot of us have to help ourselves. The best way my Prof describes it is "A software problem rather than a hardware problem" though there are some out there who have both.

There is a list of supplements on the FND hope page that people have found helpful. I'd like to add if you have gut issues or gastritis taking vitamin supplements via a sublingual spray where available cuts out the possibility that you are not absorbing them as they go straight into your blood. Vitamin B12 and D are key ones neurologists look at and our FND neurologists want them above 500 which is above the current "normal". I would add B6 was well personally. These are common deficiencies in people with FND as well as psychiatric conditions and other things like chronic fatigue syndrome. They can take up to a year to kick in so do not expect overnight miracles.

There is never one answer. You have to optimise your health all round. Get your sleep sorted into a routine, if you have migraines then perhaps take preventative measures, pacing yourself is key too. Even things that seem unimportant like constipation can all have an impact so look at every little thing. Get some sunlight it makes vitamin D and helps form serotonin too.

Make sure you have your flu jab as soon as possible as flu can worsen your symptoms big time. Infections too will increase your symptoms, this is because your tight cells at the blood brain barrier tighten up further when there is infection or inflammation. That's why everyone feels fatigue when they are ill as the brain can't get it's usual amount of it's resources. It's just worse for us.

If you try and push through this you'll land flat on your backside, quite literally in some cases. Some people end up developing non-epileptic seizure or collapse and can't move. I don't want to be pessimistic, I just wish someone had spelled it out for me in the beginning. I know pushing through does not work. I tried and paid the price.

Have a nosey around the FND website and neurosymptoms.org. Perhaps not all in one day, it can be rather overwhelming. You are not alone.

One thing I've found recently that can magic away cramps and muscle stiffness is magnesium oil. There are a few who find it can sting like crazy so always do a patch test. Magnesium supplements are on the website recommended list and are commonly used by people who have a tendency towards cramping.

Hope you find your answers. I believe you can certainly improve on your quality of life if nothing else.

xx

[Hidden in reply to thinkin]

Thank you so much for your advice! The software vs hardware...heard the EXACT same thing from my doctor too. It's an excellent description for it. I've explained the sensation of "glitching" to every specialist I've seen, and just recently met this one in particular who really seemed to get it. It all makes sense now, and the whole feeling of the pieces falling into place with diagnosis and understanding ultimately gives me that "warm and fuzzy" feeling. Thanks again for the reply - I really appreciate it

[pickleweed in reply to thinkin]

Hi thinkin. Where can I find a list of doctors on the FND Hope site?

[thinkin in reply to pickleweed]

Hi,

If you are in the UK go to the homepage in the UK site and click on FND Treatment Programmes. Or on the FNDhope.org site go to FND Guide and go to treatment. Unfortunately there is no long list. If you google research on FND you can find others.

Happy hunting

[GentleFlower in reply to thinkin]

Wooow thinkin this is fantastic advice, I feel like you’re just like me. I am just beginning to figure out my symptoms and managing my condition now. However, I still make mistakes like overdoing it when I’m feeling like superwoman hehehehe😂🙈🤦‍♀️but I just wish someone had also spelt it out to me when I was diagnosed almost two years ago. Sounds like you now know how to manage your own unique symptoms of this horrid condition called FND lol... what a great welcoming to our new friend HeartOfGold 🤗❤️

[Bumble3 in reply to thinkin]

Hi sorry to be a pain could you help me find the list of vitamins I need to help with my fnd, I have tried looking at fndhope website but can't find it, I find it quite hard to read everything but very interested in vitamins as I need all the help I can get. Many thanks Gill

[thinkin in reply to Bumble3]

Hi,

Not the best designed website for people without concentration problems let alone when you do have them.

On the FND Hope main site (fndhope.org) home page go to "FND LIVING" and drop down to "Healthy FND Living" then there is some general blurb and links to advice. The vitamin and supplements are in the "Nutrition" section, click on "learn more". There is also a little on vitamins if you go to the FND GUIDE and drop down to "Common Questions".

If using the FND Hope UK site (fndhope.org.uk): From the "home" page Click on "Learn About FND" on the orange menu at the top, it's next to the link for the Home page. Scroll down to "LIVING WITH FND" the top link "Healthy FND Living" brings you to the page with the link to nutrition as above which as supplement advice.

Happy hunting. x

[Bailey09 in reply to thinkin]

Hi I found out I had fnd Feb this year, and I also have fibromyalgia. I am still trying to get my head round it , Thankyou for the advice which you have wrote