Hello guys I am here to ask for some help after getting dead ends everywhere in the health care system here in Ireland. I am asking for advice for my girlfriend or some kind of experience you had. My girlfriend struggled with Anorexia Nervosa for a long time now, almost two years but she is been eating okayish lately. So basically she starved herself until she was bare bones and it really affected us both but after months of no help from any of her doctors she saw, I stepped in and helped her eat. She is on a steady diet with a healthy amount of calories a day and she counts everyday to make sure she is having enough. She is still struggling with ED and refuses to eat but I try support her during meals. Anyway last year around this time she was very underweight and was in hospital for a month for starving very badly. After she was out of hospital, me and her worked on a steady low-fat diet that's when it started. She started rapidly gaining weight and her diet was comprised of a very low calorie diet back then, and plain foods, but people said it was normal to get some water when people start eating after starving. So after so many breakdowns, I kept ensuring she keeps her diet steady.. As weeks turned into months the weight kept going up and up. She got swollen and started having complications.. She gained weight and her complications got worse. She couldn't walk for extended period or a small walk. If she walks down the road just 20-30 steps she would get super exhausted and suffering to breath. There is been times where she has to sit down on the sidewalk because she couldn't breath and her heart would feel stabbing pain. She has to use wheel-chair most times when we are travelling because she can't walk. At night times she wakes up with stabbing pain in heart and cries alot. It's been a year and nothing has changed only gotten worse. There is been times where she would struggle to breath like almost choking and gasping to breath. Her diet hasn't changed. She doesn't eat alot still or anything with certain kinds of fat. In last three months she has gotten Electrocardiogram (ECG), Holter monitoring, Echocardiogram few times but each time they all come back healthy and even a blood test which was healthy. If we compare her pictures she is getting more and more swollen month by month and her heart feels like it will explode any day. I am struggling to tell her to hang in day by day.. this is made her so suicidal because of weight gain and struggling to live. I have seen her cry day after day and ask for help but doctor's say she is fine since her vitals are fine but I psychically have seen her gasp for air like a choking. Even after eating she feels so full after only few spoons she still manages to finish small portion and cries from the pain because her stomach feels like it's gonna burst. I feel like she has some kind of heart condition because sometimes when she uses a blood pressure monitor it shows that she has irregular heart beats. What should we do in this situation? The doctors seem to tell us it's in our heads and she is fine but she can't do anything psychically. She has to sit all day and take taxi's everywhere or when travelling use wheel chairs..
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Dear eating help,
Boy, it's difficult for me to believe they can't find anything wrong, like the doctors you've seen seem to be saying. My guess is that they are just relying on the few tests they have given her so far, and not delving into the details enough.
And just to say, no, I've not heard of people who are recovering from their ED having these sorts of issues. There is such thing as "refeeding syndrome" where people can get ill if they've been restricting, and then suddenly start eating a lot. But I think you guys would have seen that right off the bat, rather than it still going on this much later.
I suspect you'll need to get a referral to a real heart specialist if you're going to start getting some answers.
I mean, it's not like she isn't having a bunch of very distinctive symptoms. These alone should indicate to the doctors you've seen already that she needs better diagnostics than what they've been able to provide her. I've had some heart issues of my own in the past, with the pounding heart and the shortness of breath, so duh : She's having heart issues.
Have they had her on one of those heart monitors yet ? They are small and convienient, and you wear the thing for a week or longer, as you go about your daily routine, and it captures recordings of anything weird that goes on with your heart. Here in the US they are quite common, so I'd certainly be asking the doctors about that.
Good luck with this, and don't let the doctors shunt you aside. If they can't figure out what the situation is, they have a responsibility to refer her case on to someone who has more knowledge, and I would make point of asking them directly for that the next time you get in to see them.
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I read this and think about my daughter's struggle while refeeding. You and your girlfriend are not crazy. Most physicians are not trained to understand the intricacies of refeeding. The heart is taxed and edema is real. And very dangerous to be trying to do without informed support.
You keep advocating for her and find someone who understands the process of refeeding. It took us pushing back and finally getting help.
My adult daughter required a full team to bring her through this, including a physician specializing in refeeding, individual and group counseling, psychiatrist, and a nutritionist/dietician. It has taken her two years to come out on the healthy end. Her quick weight gain was attributed to edema. Her feet were swollen and bleeding. Walking was painful. She was admitted to ICU when she finally couldn't walk. She needed medical help and got it from OSHU in Oregon.
I am sending my gratitude for you reaching out. And for you standing by your girlfriend. Don't give up. There is professional help to get her through this scary phase of the disease.