Struggling with Loss of Appetite

[noreaster]

I'm new to this site. I live in Nova Scotia, Canada - and I was diagnosed with FND in July 2020. My symptoms are right side weakness (arm and leg), speech difficulties, memory and cognitive issues and limited ability to eat. I'm five months into therapy and rehab which consists of Physiotherapy, Speech Therapy and Psychology (ISTDP treatments). Most of my symptoms are improving - albeit very slowly - with these therapies, but the one that I'm struggling the most with is my diet. For some reason I have a total lack of appetite and interest in food- which has caused major weight loss which is very concerning. I used to love food and wine (my family is even in the restaurant industry) but now I am only able to eat a few bites of food before I seem to have a sense of 'fullness' and a mental block that keeps me from eating more. I'm not feeling nauseous when I try to eat - it's just a strange feeling to the point where I can't even force myself to eat more. I also used to love a variety of foods - but since the FND I'm no longer interested in anything meat, seafood or coffee - and some textures / smells / food combinations turn me right off. Wondering if anyone has had a similar experience to mine? Would love any ideas on how to get past this food issue so I can regain my strength and progress faster with my rehab. I've already seen a few dieticians about this and they have no experience with FND.

[-132]

Hello, my partner has the same problem, the smell of food put him of. He also has no interest in food

[noreaster in reply to -132]

Thanks for the reply. Did your partner lose a tremendous amount of weight from not eating or find a way around getting more food in? I'm still losing weight and not able to eat enough to even maintain. Trying to conquer this before needing a feeding tube.

[Stanleyleonard12]

Hi noreaster,I have a similar problem with loss of appetite. Although mine comes with nausea, stomach pain and drooling. I used to love food too. I lost about 25-30 pounds but my jaw also locked so I only eat puréed foods. But the only thing that helped me was medical marijuana.

[noreaster in reply to Stanleyleonard12]

Thanks for the reply. I've tried some different cannabis oils but haven't gotten much luck from it for my appetite. Did the marijuana get rid of the nausea or did it improve your appetite?

[Stanleyleonard12 in reply to noreaster]

It actually did both. It got rid of the nausea and gives me an appetite. Although even on marijuana my appetite isn’t what it used to be. I hope you can find something that works.

[TonyBisME in reply to Stanleyleonard12]

I am the same way now with Medical Marijuana. I also deal with chronic pain so it helps with that, but It has very little impact on me getting hungry anymore.

[Van604]

Hi noreaster. I get that occasionally (the other symptoms you mention I have constantly). I find distracting myself when eating helps - I watch TV or read and focus on that, so I'm not even aware of what I'm eating (although obviously I only eat things I used to enjoy!). In fact, I find distraction helps for all of my symptoms - pain, weakness, gait issues etc. When I walk, I play music with a heavy beat in my head, or follow other people and focus on their gait. I'm about 7 years into this now and can function reasonably well now, with adaptations. Hope this helps.

[noreaster in reply to Van604]

Thanks for your reply. I try to distract myself sometimes but other times I seem to have to use all my concentration on the task ie - walking and talking. Good to hear you are doing reasonably well. Hard to think that your 7 years in, I was hoping my symptoms would subside. I had an episode 18 years ago before they knew anything about FND and symptoms disappeared on it's own over 6 months time.

[Van604 in reply to noreaster]

From my own experience, and talking to other people, everyone is different. Some people have one episode and then are fine, others aren't so lucky. My symptoms fluctuate in both type and severity. Some lasted for a few months and then went away completely. So there's always room for hope and that's what I hang on to. I think the brain gets stuck - if you can find the right thing to unstick it, you can get rid of that symptom. But it's a process of trial and error. I basically throw everything and anything at it and see what works!

[Paddoodlz]

Hello! Nice to meet someone from Canada. I am in Ontario and struggling with FND for going on 7 years now. I have the same problems.

My speech pathologist suggested I drink ensure. I find I can get that down...takes a while but I can and it provides essential vitamins and minerals etc. I try to eat whatever soft foods my hubby makes for me at supper. Scrambled eggs...

Has your speech pathologist looked at your ability to swallow foods?

Not feeling like eating I also have but the ensure has helped. You need to havtit with ice in a glass though. Don't use straws when you dri k.

Loss of appetite also hits us too as we may not be as mobile as previously. I found some good chair yoga 10 min sessions which are manageble on ..YouTube.

Hopefully that will help you. Let me know how you are doing. Stay safe!

[noreaster in reply to Paddoodlz]

Thanks for your reply. Always nice to chat with a Canadian I try to put boost in my smoothies but don't seem to get enough in to make it count. They did the swallow test in the hospital when I was first admitted and things seemed fine. I am a bit worried to do more exercise as my calorie intake needs to be higher with more activity so I don't keep losing weight. I'll check out the chair yoga though. How are your resources in Ontario? 7 years in? Have any of your symptoms improved? Thanks for the input Cheers!

[Paddoodlz in reply to noreaster]

There is no support in Ontario except from those wonderful therapist s. They seem to know what to do. I find my chiropractor who uses the activator method, has helped with relief. This time last year I was fully in wheelchair. Three months after seeing him I was able to get out of the chair while at home and just use walker.

If you have not seen chiropractor try it. Maybe there is something in your thyroid they can fix that will adjust your appetite.

I think with all of my physio I do at home and chiro....has helped give me strength. I have little to no speech, cannot write.. haven't been able to since big episode two years ago. Basically hubby and my kids come up with ideas and we try them.

I apparently have an underlying condition, they know that my h but don't know what and drs havtstopped looking.

Hopefully some of this helps.

[redhead63]

Maybe check your thyroid levels

[TonyBisME in reply to redhead63]

Great suggestion!

[Van604 in reply to redhead63]

That's interesting. When they scanned my head, they found that my thyroid was enlarged with a nodule on it. But because my levels are normal, they won't follow up. Even though I had to have an ovary removed 10 years ago because there was a huge tumour on it. There seems to be an endocrinological aspect to FND, but no one seems to be looking at that.

[redhead63 in reply to Van604]

Insisting is an absolutely must or find an other Doctor

[Strugglingtocope]

Hi, I'm aware that this post of yours is very old now and I DO hope you found a way to eat and get nutrition into your body amongst everything else.My daughter is 12. Has been in hospital since Dec 20th last year. Hasn't eaten since November last year besides a teeny bite here and there. Has been on a feeding tube in hospital the whole time apart from trials. Sge lost 10kg in 3 weeks initially at home then admitted then couldn't walk, seizures. FND Diagnosis. Please tell me have you managed to finally eat???,