Gastroparesis, post-prandial pain, eating difficulties

[Cedar]

When I reflect on the time when my son was very severe, I think I didn't seek help quickly enough to manage food and water intake. Of course, 'help' is so often limited and sometimes distinctly unhelpful, but families in this situation need and deserve professional support.

That’s what I’m trying to not let happen. It’s so hard when you need help so critically, yet going to get it may very well make the situation even worse. I’m hoping we can go the G.I. route by getting help from someone in that office tomorrow because he desperately does not want to go to the emergency room. His first and only Covid infection in 2022 is what disabled him, and our area is in the middle of a big Covid wave now, making the emergency room even more risky for him aside from regular PEM concerns.

When I had a period of troublesome bouts of post-prandial pain, I found lying down with legs elevated after eating seemed to be helpful.

This is helpful, thanks. I will suggest it to him. He has an adjustable bed, so he has the option to have it elevate his legs.

He decided he was ready to try again with the lentils and naan, so I’m praying that goes well (he wanted to eat alone so he could watch videos, lol, so I will have to wait and see how it went). I’m proud of him for trying again.

 

[Cedar]

When I reflect on the time when my son was very severe

I also want to add that it’s really an encouragement to me here when I see people refer to “when I was severe” or “during the times my son was severe.” My son has generally been in a slow progressive decline version of the illness to this point, with some long plateaus at various points, but it is an encouragement to know that that doesn’t necessarily mean he will always be so. I love to think of a day when he could also say “when I was more severe.”

 

[Peter T]

Though not something I personally have had issues with, in previous threads here some of us have reported issues with dietary fibre.

I do hope you get medical support for your son quickly. This is such an important but poorly supported area of our care. Though there won’t be many dieticians with experience of ME/CFS it may still be worth asking to see one as they should have ideas on maximising calorie intake with limited food intake.