Struggling with nutrition, not being listened to

Symptoms and Treatments
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Hi! So… I’m kinda lost with my situation right now.

So we took blood tests a little while ago. They were okay, they took albunim levels and checked my hydration levels etc. Because the blood work was okay now after them no one is listening to me… Not the nutritionist, not the doctor or the gastroenterologist (<only through a consult atm)

Before the blood test the nutritionist believed me… So now I’m at a loss. She called me and said to me I didn’t need to drink the nutrition drinks anymore and I would be okay if I just ate 3 times a day…

I currently eat 1-3 times a day, about a 1000 calories a day. On a good day I eat one bread in the morning, a scoop of dinner, and at night one bread or something lighter.
I’m struggling with my energy a lot and have been since my situation got worse with my nutrition intake but everyone says it’s not because of my nutritional situation… I felt just a bit better with the nutrition drinks, I cannot stand the taste and texture now so I stopped drinking them after my blood tests.

I usually struggle with my energy already but I am able to function in what I need to and compared to what my situation is now… I’m desperate to just get my life back… But now I have no one to talk to and ask for help because they don’t believe me. The doctor even before and now keeps saying she has nothing to offer me…

My iron was just a bit low in the previous blood tests but it was okay now. It sometimes gets a bit low during my periods and has never effected me like this or this bad (it just drops a tiny bit). I’m taking iron and not feeling any better, but they keep putting the blame on my ‘‘low iron’’ that is not low now…

I still feel weak, dizzy, extremely tired and I’m still having trouble talking and thinking sometimes…

I can’t function normally… I’m struggling to go to work which in only 4 hours and one day in a week, and also to my therapy sessions… I’m also struggling with keeping everything clean or doing stuff that I need to, like washing my clothes etc :frowning:

I tried discussing the feeding tube or even just anything… But they said no and said they have nothing to offer me…

I’m feeling overwhelmed and alone and I don’t know what to do at all… I could atleast lean on the nutritionist before even a bit…

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Of course you’re weak and dizzy. You’re not getting enough nutrition. It’s just that your body has been able to compensate overall, and so your blood work is decent.

Do you have gastroparesis or anything else as a part of this? Do you have private or socialized medicine in Finland? I’m just wondering as that may make a difference in how you advocate for yourself.

Sharon from ModSupport

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Some have suggested that I may have gastroparesis and I’m trying hard to get the tests done!
We have both, socialized and private medicine but the private one is way too expensive for me unfortunately, I would probably get help from there :frowning:
Thank you so much for the reply and I’ll try to keep fighting for myself! Sending loads of support ur way as well! :slight_smile:

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My condition is autoimmune arthritis. I have a close friend who’s in the same position as you are, with dealing with a relatively new diagnosis of EDS, and with a lot of these nutrition problems. We’re in the New York metro area, with private medicine, so theoretically have all the choices in the world. But it still took her close to a year to get a port placed and start getting iv fluids. It took around the same time to ultimately get tested and start getting treated for gastroparesis. The only thing that went smoothly was getting her hearing tested and getting fitted for hearing aids.

I guess the main thing I want to encourage you in is to continue doing what you’re doing, and know that this is a marathon, not a sprint.

Sharon

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Ty so much, it helps to hear that I just need to keep fighting! It has taken 7 years to even for them to aknowledge my joint problems and now the 5th or 4th year to try to get a reason or help for my stomach issues!

I hope you keep fighting and that you’re doing well! Best of luck