Does FND cause gastroparesis? What el... - Functional Neurol...

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Does FND cause gastroparesis? What else will FND do to me?

AjaStar profile image
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My endoscopy came back normal, so my gastroenterologist is thinking I may have gastroparesis. I have to schedule a gastric emptying scan. So my question is does FND cause gastroparesis? I have bloating, fullness, gas, nausea and stomach discomfort. I notice that I get very nauseous after eating anything cooked in oil. I have to eat small meals. I also had to stop drinking soda. With FND I usually can’t do much physical activity but I always enjoyed my food and going to restaurants, but for the last two months I’ve been nauseous. Is this another thing FND has taken away from me? I’m in year 3 with FND and now my stomach is no longer functioning normally. What is gonna happen in year 5? I’m getting scared of what will happen next….what else will malfunction?

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AjaStar
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Greyrainbow profile image
Greyrainbow

Hi, at last found someone else with all my stomach symptoms as well as FND. I too not very mobile but used to like to go out for lunch, but cant eat any cooked meal now without payback symptoms. I ve spent two years under specialist gastro and got nowhere, despite lot of tests. I like you don't know how much more I can take. I am going back to my neuro FND specialist in 2 weeks time. Let you know how I get on. When things drag on it's so hard to stay positive is'nt it? Take care.

AjaStar profile image
AjaStar in reply to Greyrainbow

I’m glad I’m not alone but I’m sad for us too. Did you do the gastric emptying scan? Were you diagnosed with gastroparesis or do they still don’t know. Describe your symptoms to me. I hope you feel better soon.

Greyrainbow profile image
Greyrainbow in reply to AjaStar

Not had gastric-emptying test and no diagnosis of gastroparesis. Have done low fodmap diet for 6 months with no change. Have had every part of me from neck to knees xrayed, ct scanned, injected with contrast,colon transit test and proctogramme, nothing. My symptoms are a constant mid to upper stomach ache that is so bad I just spend most of my day now sitting on sofa with feet up or on the toilet.Have also tried various expensive probiotics as advised by gastro team. None have helped. I have good support for my FND but not for gastro issues. It makes me so mad that there are so many doctors and specialists out there that are happy to keep fobbing us all off with another appointment in another 4months time! No urgency at all, while we are all trying to manage how we are going to get through the next day or week! When we can't cope anymore , I hope they feel guilty. I know none of us would wish this on anyone but if some specialists had this at least they would know how we all feel. Also when we have a rant with frustration, how many of you, like me, have doctors tried to palm of with antidepressants saying it's your mental health? If they damn well did something about the physical things we could all cope much better. Sorry to all for ranting. Having a real bad fed-up day! Got no fight left.

AjaStar profile image
AjaStar in reply to Greyrainbow

I am very angry too. Cried again today because my brain and body feel so “wrong” and I can’t do much and am scared about my new stomach issues. I hate when they ask if I’m depressed, as if that’s what caused my symptoms. I tell them it’s the other way around. When my symptoms get worse, of course it depresses me, and I asked them, wouldn’t you? But that’s the wrong thing to say because yes they offered me a pill for that and I said no way. So I don’t mention I’m depressed anymore..it’s such a stupid question. Are you always gonna be happy if you don’t feel good and there’s no cure? I was a little better earlier and I was able to do the laundry and I was happy about that but I’m not feeling good again and so the vicious cycle continues. But we have to be strong for that next moment that we feel a little better. I hold on to that and I try to distract myself until then. It’s hard but we are in this together along with the rest of the FND community. Hope your next good moment comes soon for you!

Greyrainbow profile image
Greyrainbow in reply to AjaStar

Thankyou so much.It helps to know not the only one. With the FND I could plan ahead to do little things but with the stomach issues can't plan at all. Like you get little windows when I attempt something. Sad that it might only be something like doing the laundry!! Take care.

Brokendeer profile image
Brokendeer

Hi, I have heard that Irritable Bowel Syndrome is very much a part of FND and indeed I have that condition along with other digestive issues which have gotten worse over the years.

I would say from my limited experience of FND and speaking to other diverse symptom FND Sufferers in the past, it may not be FND related your current Gastro issues.

Even though FND can affect the nerves to any part of the body and cause them to malfunction at anytime for any duration, the digestive system esp. Bowel is quite a `stand alone brain system' and your symptoms sound too complicated for simply FND interference?

1) If fat or oil is an issue, have you had your Gall Bladder and Bile Duct checked?

2) Did you know that Lupus is systemic and affects the digestive system/nervous system too?

3) Did you know (though rare) that you can get Epilepsy attacks in the bowel?

4) Have you heard of the FoDMap controlled elimination diet; undertaken by Medical Nutritionists to find out if you are sensitive to certain foods?

5) Have you tried downloading any Guided Meditation Muscular Relaxation Sessions to see if unwanted muscle tension is making things worse?

I would ask these questions of your Medical Professionals and see if they can rule them out before pinning everything on FND.

Good Luck

Look for the calm in the Storm!

AjaStar profile image
AjaStar in reply to Brokendeer

They did abdominal sonogram and endoscopy so far looks normal. Gastric emptying scan next. This is all so overwhelming….all these tests and symptoms. How do u handle it? I eat most of my food early in the day and eat a very light dinner and nothing after 5:30pm.

Brokendeer profile image
Brokendeer in reply to AjaStar

Hi my IBS gets worse once or twice a month when gynae pressure increases.

I like you, have always thought that smaller meals were the answer. However, I have had terrible bloat and discomfort this last year so have literally this last month been trying to keep to porridge (oatmeal) for breakfast, main meal lunchtime (normal size), light tea around 5.30 and nothing in between - this seems to help as stomach/bowel is having more `downtime' to digest and relax? Early days though, so we shall see if long term benefits!

Look for the calm in the Storm!

AjaStar profile image
AjaStar in reply to Brokendeer

I’m gonna start the oatmeal and soup meals as well. I miss eating whatever I wanted and at any time I wanted. You say gynae pressure? I have fibroids does that cause gynae pressure and do u think that may be affecting my digestion?

Brokendeer profile image
Brokendeer in reply to AjaStar

Hi my gynae pressure increases because of fluid retention and that pushes on my bowel & bladder and shuts down my pelvic muscles too until the fluid has worked its way naturally through the system- so the temporary pressure constriction affects a lot.

I really am not that familiar with fibroids, but they are benign growths that obviously reduce the space you should have in the pelvic area, so could easily be exerting external pressure on the bowel making it more nerve irritated and I should imagine makes your bowel work harder to keep flowing, would be my guess?

Never underestimate hormone upset though...

...I know someone with Endometriosis and they are in excruciating pain/agony with external pressure on their bowel/abdomen when they have their period. Surgery on the outside of the bowel did not help and the bowel internally was fine. The only thing that helped was hormone medication i.e chemically induced menopause.

Look for the calm in the Storm!

Brokendeer profile image
Brokendeer in reply to AjaStar

P.S I do drink water out of meal times, but not hot chocolate, tea, coffee, juice as these go through the stomach digestion system - water does not. If I want those drinks I try to have them with a meal.

Also a couple of years ago I went Lactose Free for Dairy products as was told as we age we become less tolerant of Lactose. Yes, it did calm down the bowel urgency issues a bit by doing that.

Don't get me wrong, I sneak the odd square of chocolate in some days, but generally I am trying real hard to limit the amount of work my poor digestive system has to do. I figure FND overloads the brain signals, and the digestive system is a `Stand alone brain' so needs the same signals pacing/respect to cope daily?

Look for the calm in the Storm!

Brokendeer profile image
Brokendeer in reply to AjaStar

P.P.S Sorry almost forgot again! Painkillers, esp. Paracetamol for me at least cause really bad bloat and once the drug leaves my system I get bowel issue - although unavoidable if I need pain control (as intolerant of most other types drugs) I do know to expect this side effect of that drug.

Look for the calm in the Storm!

Brokendeer profile image
Brokendeer

P. S Almost forgot, as you are a woman you may well want to check out Ovarian Cysts as a possible cause of the severe bloating and bowel interference. Cysts can get big without being noticed and can cause terrible symptoms both physically and biochemically!

Look for the calm in the Storm!

AjaStar profile image
AjaStar in reply to Brokendeer

Yes I have a cyst and fibroids but neither my gynecologist or gastroenterologist said they are interfering with each other… I’ll have to ask. Thanks

Jilly61 profile image
Jilly61

I have been reading all your post and resonating with alot of what you are saying.I was diagnosed with FND 2.5 years ago, post waking up after an operation to insert a spinal cord stimulater. They initially diagnosed me with a spinal cord injury. This can't be proven until I have it removed so I can have an mri.

There are other issues, but I wanted to talk about my gut.

For me it seemed one day I could eat what I liked, then I remember just after xmas, I was eating an egg sandwich and I couldn't finish it. I had pain, bloating, then came nausea. I was referred to a gastroenterologist and the gastric emptying test ordered. I had gastoparesis. I was referred to a dietitian and advised of the foods that are easier to digest and to eat smaller meals x6 a day. It is really hard to sustain. He also put me on a drug that helps the stomach work to move food. This mostly seemed to work but I had problems with my bowel also. Mega colon from chronic constipation.

And a prolapse rectum and rectoceole.

I had to have an operation for repair in April.

I wish I knew then ,what I know now, how ops can send you in a tail spin. The pain was bad enough but not understanding why my symptoms were getting worse I got to the lowest I had ever been and just wanted it all to end, I wanted to end it!

Like you said AjaStar, it's not like we are depressed to cause this but that we get depressed because of what we are going thru.

I had some therapy and got thru it but was never as good .

Then in August I started having an increase in my symptoms. My bowels were loose and yellow and I went off eating. I ate nothing for a week but had protien drinks on 3 occasions, my stomach felt alot better but I was very weak. I ended up in our local public hospital, they don't do FND at all and I was left in a bed for 3 days,just treating my pain . They didn't even notice that I ate nothing the whole time I was there.

I was then transferred under my neurologist to his neuroscience acute ward. I have respite there . But he has told me it can no longer happen as it is for acute patients, which I am not.

Anyway during my 3 weeks there, I was able to experiment with different foods, cutting out lactose and gluten.

When I came home I have slowly increased my food intake. With the restrictions and small amounts, I am noticing I am alot better.

I ensure I have movicol and fibrogel everyday to ensure the motions are soft. I have learned in a not so nice way what happens even if they are that little bit firm!

I have learnt so much lately about the autonomic nervous system and when the bowels and bladder and gut is out of order, it reflects in an increase of symptoms.

So keeping my bladder in good shape by drinking water and my bowel in good shape by eating well and often and keeping it moving.

Still suffering fatigue but that is probably low calorie intake and I am increasing my physical pacing each day.

Good luck with your journey

AjaStar profile image
AjaStar in reply to Jilly61

Wow it makes me sad that we are suffering so much. I sometimes wish God would give me the power to heal to help others feel better. I am glad you shared your journey. It really helps us all. Like you said, one day I’m eating whatever I want and the next my stomach decided no more. Eating small amounts does help, but it’s so boring. I miss my chili cheese nachos. I had potato chips and coffee yesterday because I was too tired to cook and boy do I regret it big time. Super nauseous and I felt the acid rumbling, my stomach cramping and diarrhea. This morning the nausea is a little better but all I’m going to have today is Gatorade in small sips. My doctor had prescribed Metoclopramide (Reglan) for my stomach muscles to work, like what u said. You said it helped some. Did you take it while feeling nauseous? I haven’t tried it yet cause I’m scared of how it will effect me so I’m waiting for nausea to go away. Or should I take it now and will it stop nausea? I know everyone is different but it would help if you share how you were feeling when u took that pill. I am hoping you are well today. Thank you so much for responding 😀

Di01 profile image
Di01

Hi today i got diagnoised with fnd but been having gastro problems for 12 months recently been more often at night i've just learnt from your post that this is part of the condition thank you guys gor sharing if anything helps plz let me kno been struggling for ages without any treatment and mentally got out of hand where i was on the edge of ending it because the issness was killing me off each day but i need to learn more about this condition thanks u both once again

AjaStar profile image
AjaStar in reply to Di01

Yes this is very frustrating and scary. As for tips on the GASTRO side of it…I noticed that eating smaller meals and not eating anything after 6pm has helped improved my nausea and bloating. You have to be consistent. Hope you feel better soon.

Di01 profile image
Di01

Anyone suffer mentally with fnd my nevous system feels shocked all time causing my brain to overload and have strange disorders like skin picking so fed up with all these health issues wanna chuck the towel in 😭

Starrynightz profile image
Starrynightz

I recently was diagnosed with FND which I personally don’t agree with but having just moved to a new state I’m dealing with new doctors so it’s a fight over opinions instead of finding a real treatment. I have a long history of stomach issues which I’ve been fasting for since I was 18 yrs old. First diagnosed as stomach flus, then GERD, then IBS and finally gastroparesis. I caution everyone on using Reglan, this medication is way over prescribed. Literature will show you the medication is intended for acute use only and no more than 2 weeks. It crosses blood brain barrier and can cause horrible movement disorders like tardive dyskinesis. Kefir is a super useful drink to keep in your home if you have stomach issues especially gastroparesis. You can drink this daily to keep your gut healthy. When symptoms are severe stick to a liquid diet only, try to avoid protein powders unless they are isolates which are much easier to digest. Get blood tests regularly because you’ll likely develop malnutrition and problems absorbing vitamins especially b12. I hope some of this is a little helpful.

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