Food and FND: I have just realised that... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Food and FND

Keeponfighting profile image
39 Replies

I have just realised that the amount of food that I eat it triggers pain all over my body and other FND symptoms. When I fast and stay long hours without consume food I don’t feel pain. Has anyone else noticed that?

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Keeponfighting profile image
Keeponfighting
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39 Replies
bobbybobb profile image
bobbybobb

I tried fasting. I tried gluten free. I tried organic, nothing seemed to make any difference.

Keeponfighting profile image
Keeponfighting in reply to bobbybobb

I am sorry to hear that

Jazymay profile image
Jazymay

Hi, yes, sort of. For some reason i go as long as possible without eating. Its not deliberate, i just dont mentally want to. But no matter what time of day it is, when i do eat i slow down massively. I guess that is why I don't want to.

My brain slows down and I want to sleep and it stays like that until I get up again the next day. My body is heavy and tired. I don't know about the pain and wobbles. I hadn't really thought about it till I saw your post.

Jaz

Keeponfighting profile image
Keeponfighting in reply to Jazymay

Hey Jaz

You are spot on. When I overeat the next morning I feel very fatigue, lots of pain, tremors. I have just discovered this 2wks ago. About a month ago I stayed 3 days and another 2 days without eating and I had the best days in 8 years and I was so happy. I’ve been doing this experiment and every time I over eat the next morning is a nightmare for me. So now I don’t have proper meal every day. I thought maybe this concept will help someone too.

Jazymay profile image
Jazymay in reply to Keeponfighting

Lol. I didn't like to say it, but I only eat at about 3 or 4 pm. And then I feel too full all evening, and it is only a reasonable sized meal. But the weight of my limbs and feeling of absolute exhaustion. I can't even remember what is said to me.

This is really interesting and something I've been thinking about quite a bit recently. One of the only triggers I can pin down is that often after eating I will slow right down and then cannot move at all.

I'm planning to try a lot of different things in the new year - paleo, gluten free, wheat free- I don't think I could do fasting, but might give it a go as well. Will keep y'all updated!

Much love

Keep fighting x

Bailey09 profile image
Bailey09

No I haven't tried fasting but i will give it a go xx

Jazymay profile image
Jazymay

Yes, I was wondering about an intolerance or allergy. (Both my children were born lacto-intollerant and both of their symptoms were severe constipation. I will not go into details, other than to say that they both made up for "not filling their nappies" when I put them on soy.)

It seems that there can be quite a number of symptoms associated with digestive problems and foods. At one point I was unable to eat wheat, milk and soy. I lost so much weight that I wore a bikini in public for the first time ever at 35. But if I had a veggie sausage cooked on a bbq after everyone one else, I was condemned to the toilet!

Perhaps I should revisit my old eating habits and see if it helps?

Jazymay profile image
Jazymay

Sorry. I also wonder if it is all about processed foods. Don't get me wrong. I am living off them at the moment, due to my symptoms. But maybe we can't tolerate the chemicals? I know I am sensitive to chlorine, bleach and cleaning chemicals. Perfumes give me a headache and i can taste lip balm and body moisturiser (even when I don't eat it or put it in my mouth!) I can't use petroleum based products because I get a taste of petrol in my mouth. After a shower I can taste the shampoo for a few hours, and smell chlorine in my nose.

Just a thought.

Jaz

Itcangetbetter profile image
Itcangetbetter in reply to Jazymay

Try vegan shampoo. You can buy it in a block

Jazymay profile image
Jazymay in reply to Itcangetbetter

Hmm. I never heard of that, but I stopped going to body shop in the 90s, so likely missed quite a lot since then!!!!! 😋

Worth looking in to.

Itcangetbetter profile image
Itcangetbetter in reply to Jazymay

EBay!

Keeponfighting profile image
Keeponfighting in reply to Jazymay

No my dear I meant the amount of food I eat rather than the types of food. However you are right, there are plenty of junk that we must avoid as it is unhealthy even for healthy people let alone us.

Itcangetbetter profile image
Itcangetbetter in reply to Keeponfighting

You are what you it.

I changed my diet and got better

Itcangetbetter profile image
Itcangetbetter in reply to Itcangetbetter

Eat even!

Jazymay profile image
Jazymay

Forgive me if this is becoming a rant. Post STOP if it is, lol. Another thing I have had forever is that my skin cannot tolerate things like strong astringents. Ie, face masks and even Vicks vaporub. It just burns my skin. Once, my grandmother put some vinegar concoction and brown paper on my head to help my earache. I kept telling her it was burning but she ignored me for hours. Eventually she gave in and took it off in a huff, only to find my skin was burned underneath. She explained, "what will I tell your mother!" Lol. At least I was right!!!!!

I was also, literally, allergic to the sun for about a decade. Any skin not covered or smothered in factor 30 (the highest at the time) would break out in a rash of tiny spots. If left there would be spots upon spots upon spots until it was really swollen. The spots were both intensely itchy and really painful at the same time. Eventually it got less and disappeared before I moved to Aus!!!! Thank heavens, lol.

So guess my thoughts are:

Is there a biologic sensitivity going on here? A sensitivity to foods, chemicals, drugs, environment, stress, psychology, etc? Is there a biological predisposition? Do these common problems upset the balance and cause massive reactions in the immune/nervous system? Is the brain just overloaded?

Itcangetbetter profile image
Itcangetbetter

Yes. Go vegan and don't buy any cleaning products for your house or your body with any chemical/animal additives.

I've been doing that for two years and I'm transformed

Keeponfighting profile image
Keeponfighting in reply to Itcangetbetter

Sorry my dear I can never go vegan

I love meat too much but I have reduced meat considerably.

Itcangetbetter profile image
Itcangetbetter in reply to Keeponfighting

It's full of antibiotics, pus, chemicals and God knows what else.

All I know is I gave it up and got better

Jazymay profile image
Jazymay in reply to Itcangetbetter

Vegan is easy for me. Not a fan of meat. Got the grey cells working, lol no pun intended!

Keeponfighting profile image
Keeponfighting

Well my dear Jazymay you are always welcome to post your thoughts. I never had an allergy or intolerance to any products so I wouldn’t know much about the subject. All I know is that when I eat a lot in a day , this being two meals per day my body feels healthier, I feel extremely tired, uncomfortable, and this worsens the following morning. Since FND is based on the functioning of the nervous system I believe that eating more than you should can slow down or accelerate the activity of your nerves when sending signals to other parts of the body. Since scientists don’t even know the exact cause of this condition I am unable to say which side makes it worse; if it is when the activity of the nerves accelerate or slow down. I am now sure that it is to do with the amount of food I consumed daily as I have experimented multiple times. The issue now is fighting to resist eating more than I should.

God bless you

Cuileann-6 profile image
Cuileann-6 in reply to Keeponfighting

Very interesting, that makes total sense. Xxx

Jazymay profile image
Jazymay

Mmm, lol. Resisting the bigger meals.

sykgirl profile image
sykgirl

I'm definitely over sensitive to a lot of chemicals and body doesn't tolerate most medications. I recently read that someone was doing research into the link between CFS flare ups and plastic in bedding and mattresses. Plus there is a theory knocking around about breast cancer and plastic in clothing. So I have replaced all my bedding, including duvet pillow and mattress protector (can't afford new mattress) with pure cotton and woollen products, and am in the process of doing the same with my wardrobe (not so easy!). I am definitely sleeping noticeably better and waking in less pain. Obviously, we are all individuals, and what works for one of us may not work for others, but thought I'd share since vaguely relevant x

Keeponfighting profile image
Keeponfighting in reply to sykgirl

Many thanks skygirl

Justdrea81 profile image
Justdrea81

I never made the correlation, but you might be right. I already eat mainly non-processed, lower fat stuff because I have Celiac and no gallbladder, and hubby is diabetic. The problem is if I don't eat my GERD kicks up and I get incredibly nauseous and may puke.

I have been back to work but working from home since this all started. In the morning I have 2 slices of gluten free toast (usually 2 hours apart) and then I mainly sip juice for the rest of the work day. I'll eat a bigger meal afterwards that sort of becomes lunch/dinner, and then I'm usually exhausted. I just figured it was from work fatigue, but maybe not. This has been my routine for at least a month. I'm also on Vitamin D supplements so I'm really never hungry anyway.

Keeponfighting profile image
Keeponfighting in reply to Justdrea81

Hey Justdrea81

Please do experiment first

Eat just salad mainly lettuce and tomatoes without meat for two days and fruits I guess and see how you feel.

Since I discovered that I try not to have big meals every day. I only had bread and sardine today and maybe tomorrow I will have one main meal but I have to watch how much I place in my body. Honestly I feel more in control of my body now since I discovered this method . I have even reduced my Pregabalin pills from 300mg to 150mg every other day. Just try but we must be careful that we are not missing out on the most important nutrients. We have to find the proper balance.

All the best

Justdrea81 profile image
Justdrea81 in reply to Keeponfighting

I am definitely open to whatever will help me feel better. I also have been trying to listen to my body and give it what it wants.

Keeponfighting profile image
Keeponfighting

Same here I am just fedup of being ill and not being able to work 😡 Drs seem to abandon you cause they feel that there is nothing they can do so I’ve got to do what I can for myself and others 😉

8756 profile image
8756

All my reactions are caused by either food or smells.

I have not eaten any fruit or veg - except white potato and 4 days being monitored last year - since early 2013.

It started in 1995 with losing consciousness around herbs and spices, this has progressed slowly at first but then it gathered momentum and I am now able to eat approx. 7 different food stuffs.

My reaction with both food and smell varies from mild light headedness (which occurs with the food I eat) to catatonic or complete loss of consciousness.

I have had all the tests from allergy, metabolic, MRI, immunology, sleep study, nerve studies, VEEG - you name it I've probably had it and I am as normal as they come. Even my blood work comes back fine even though I don't really eat anything that can supply the vitamins and minerals needed. My saving grace is eggs apparently!

My neurologist says FND I say not. There is such an obvious cause and effect with triggers and symptoms that I think it must be medical.

We are currently trying to figure out what to do to get the best outcome from an fMRI.

How do I deal with this? I only leave the house if I need to, I do work occasionally but in a small office for just a few hours at a time where they are considerate of my condition. When I leave the house I try to do everything in one day as the "hangover" can last days and I feel stunned.

Fortunately I am not a social person so I am more than happy to stay home.

Just work with your self - you know what makes you feel best - or worse - so adapt if you can.

Keeponfighting profile image
Keeponfighting

Thanks my dear 8756

I am sorry to hear you have this terrible condition which as you know that when doctors can’t figure it out and they want to remove themselves from your case they then come on with the diagnosis of FND. Keep on fighting for them to find the real cause for this condition so you can have a much better life. I wish you all the best.

thinkin profile image
thinkin

Hi,

Be careful if you eat stuff with additives. Apparently MSG uses up your vitamin B6 to break it down. It's probably why it causes migraines and makes FND worse. My mood can drop like a stone too as B6 is needed to make neurotransmitters including serotonin.

Also keep away from stuff that says "no ADDED MSG" as MSG is made in the fermentation process so even though they don't add it they make it in the manufacturing process - and then have the cheek to say "no added" even if they know it's in there. It's why soup tastes better as it ages as it makes a form of MSG as it sits in your fridge. Things like beer and cheese also have a similar set of chemicals in them "free glutamates". Also there are food companies sneaking in MSG in the palm oil as many asian countries add it to the oil (found that out through my best friend whose husband is Chinese and a chef). This happens even in the UK as food companies don't have to declare the ingredients in oils.

In the US I know they use MSG as an organic fertiliser which although does not add MSG to the food it can increase the amount of free glutamate in the food. So in a way organic can be worse if you are sensitive.

If you want to take B vitamins try the bioactive varieties as the are more effective in much smaller doses, but remember to up your magnesium too. If there is something wrong with any stage of the conversion to the active forms then vitamins do not work as effectively and could even be harmful. Mainly bowel and liver are thought to be responsible for the conversion of vitamins to their bioactive form. There's still much research to be done on the bioactive forms of vitamins so tread carefully.

To add vitamins to your diet without having to farm or take tablets you could look into sprouting beans and lentils etc., as this increases vitamin content. Be careful with fava beans as sprouting increases the amount of naturally occurring L-Dopa and C-dopa. C-dopa irrevocably binds to and destroys vitamin B6 so best stay clear of fava when sprouting.

This may not help everyone, but hopefully it may help someone. I know those in the US where food companies do not have to declare MSG in their products this can feel like a seemingly impossible task.

You are not alone. I hope you find your answers. xx

Keeponfighting profile image
Keeponfighting

Many thanks thinkin for your advice

pickleweed profile image
pickleweed

It sounds like your gastrointestinal tract is neurologically extra sensitive. Having small meals instead of large ones may help. Avoiding spiciness may help.

Keeponfighting profile image
Keeponfighting

Yeh I agree

I haveto cut lot of things

Many thanks Picleweed

Kittilyn profile image
Kittilyn

I have recently gone to a naturopath who has given me a diet plan which I'm trying to follow, and it does seem to be helping me feel more energetic. It's mainly veggie with some oily fish.

Cuileann-6 profile image
Cuileann-6

That's very interesting. I have noticed that if I delay eating after I wake up, I feel slightly more energetic. Plus I don't get the usual discomfort associated with eating food. What a weird condition this is. Wishing you all the best, xxx

Keeponfighting profile image
Keeponfighting in reply to Cuileann-6

Thank you so much and merry Christmas

Cuileann-6 profile image
Cuileann-6 in reply to Keeponfighting

You too! Take care xxx

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