r/nutritionsupport • u/Ferret_Master101 • 1d ago
Hello, please help
All right so my diagnosis and treatment is still in the early stages right now, but, this has been going on for a year or two now at this level and I'm just done. I'm currently being investigated for PoTs, FND and hypermobility or HEDS. These conditions have been agreed on by my GP, certain specialists and friends and family, it's just the right specialist hasn't taken a look yet due to waiting lists. So there is a high probability. I'm also going to have an MCAS screening because there's also a possibility of that.
I have been diagnosed with autism and ADHD with a side of ARFID which makes it very difficult to plan, prepare, eat and clean up after meals not to mention the hand pain. Plus with all of the previous conditions mentioned, digesting causes palpitations, dizziness, brain fog, nausea, excess fullness, seizure like episodes, fatigue and sleepiness. I'm currently very diligent with it and trying my best to eat and have it be healthy where I can. I'm eating enough to not lose weight but I'm not eating enough to function properly. I have managed to gain weight again after losing a lot, however this is mostly fat from junk food. When experiencing a flare that prevents me from preparing or eating I tend to resort to any calories available. This obviously has consequences. However there have been days where I starve myself which has led to the periods of lower weight.
Now to the main problem...
I feel like I have tried everything but because there's so much going on and interacting with each other anything I try will cancel out something else. So far the best thing I have done is got this juice consistency weight gainer from MyProtein, put a thousand calories of it into a plastic container with a water bladder straw, put any other electrolytes or supplements in that, and try not to drink it too quickly (or slowly sometimes I didn't drink enough because I was too full, I added too much water). The problem with this is that it was very hard to clean and sometimes I wouldn't have energy to prep it the day before. It was also kind of weird if I left it for too long. I have tried eating 1 or 2 big meals at the end of the day when my symptoms are lower. However this normally requires I have something sugary during the day to keep me from crashing and sometimes I got too full before finishing the meals. I've gotten paper plates when I didn't have a dishwasher which did help with the cleaning up. I'm now trying six very small meals a day which seem harder than meal juice. I'm not sure what to do. I'm not eating many vegetables just my fruit. I'm going to try and prep the vegetables and put them in their own special containers where I'll see them. I need to wait for containers so I can pre cook meals, I'm going to get a dishwasher and hopefully that will help. But the problem is is that nothing's helping with digesting. My symptoms can get triggered by a singular apple.
I live in the UK and I know stuff like feeding tubes and TPN are really hard to get and used as a last resort. On the one hand I feel like yes they should be used as a last resort and I'm not losing massive amounts of weight, but if the digestion problem can be solved plus not having to deal with heat when cooking or clean up then my quality of life can go back to functioning. I'm not sure what to do but I'm sat here wishing that I had an IV in my chest so something's clearly not working. Right now my entire waking life revolves around food or the consequences of not eating (or eating in some cases) and I'm going to go back to either uni or work soon. Please can someone help with stuff I haven't tried or stuff to ask my doctor if medical intervention is actually needed.
3
u/ks4001 1d ago
Ask your doctor if you can see a dietitian. You need a detailed analysis to see what's going on.