Curious about eating disorder treatment? I'm not having a good time.

[Night Elf]

Ugh! I've been in program since beginning of February and I'm still struggling. The hardest part for me right now is following and sticking to my meal plan. It's called normalizing my eating. I eat 3 meals and 3 snacks a day. I have so many proteins, starches, etc. to put in each meal. Now, I had either 1 of 2 disorders and no one can give me a clear answer. Suffice it to say I restricted heavily. I ate anything I wanted to eat but in very small portions and I was grazing all day. Instead of satisfying hunger, I'd eat just enough to take the edge off. And because I was grazing, I never really got hungry anyway. So now, in normalizing my eating, I'm eating 3 big meals a day and 3 small snacks. That's a lot of food that I'm not used to eating! I end up feeling really full and I just cannot get used to that full feeling. Everyone says I'm not really as full as I believe I am because I don't eat enough to be as full as I believe, but all I know is I definitely feel a lump of food sitting in my stomach and it lasts about an hour and a half before it starts to settle down. The interesting thing is that I am starting to feel hunger when I eat every 3.5-4 hours. Sometimes as early as 2.5-3 hours. It's a weird feeling. 🙂

So the problem is every now and then I panic and my disordered behaviors become so strong that I give in to them. Most of the time I am restricting but I do occasionally binge, just not huge amounts like binge eating disorder. I may eat 1200-1500 calories in one sitting and considering my meal plan has me eating 1800-2000, that's like almost doubling my calorie intake. So that freaks me out and I want to heavily restrict for the next couple of days. I'm having to battle within myself not to give in to those tendencies, but sometimes I fail. Like last night, I skipped dinner and had an extremely small evening snack. I fully expect my case manager and dietitian to comment on that when they check my records today. That's not being meal compliant. And even worse, I don't want to eat breakfast today. It feels like a non-eating day. So I'm going to have to force myself to eat which they call mechanical eating. I hate it!  I can't get used to eating when I'm not hungry.

So my case manager/therapist tried to get me into a higher level of care, but my insurance wouldn't approve that. Instead, what they did approve was increasing my 3-day program to a 5-day program. I'm online for 4 hours a day 5 days a week. I have no idea how long I'll be able to do this. If my insurance decides I need to go back down to 3-day, I'll just have to cope with unstructured days. Right now the weekends are the worse because I do not have the support of group to get me through the day. It's the weekends when I usually following my ED tendencies. Both Saturday and Sunday were bad days. I feel guilt and shame that I gave in to my tendencies instead of fighting them and I'm going to get a lecture about it, probably on Wednesday when I have meetings with both my case manager/therapist and dietitian. I really want today to be a good eating day so I'm postponing breakfast by an hour to see if I can get hungry. I will eat regardless but my stomach hurts less when I am hungry.

Groups are going well. I'm learning interesting things and confronting some truths that I've been avoiding for years. Sometimes it's hard to take and I let it wash over me. But the session topics don't change each week. We just get new information and recycled information. It goes round and round so it sinks in, I suppose. Plus I'm positive they're telling us everything we need to know and there is no new information to be told. They just take different approaches. Some of my groups use CBT and some use DBT. I'm still learning the difference. We talk as a group, we write, we do expressive art. The ladies in my group are all wonderful, very supportive of one another. I'm the second oldest in the group and the youngest is 18. So quite a wide range, but very interesting that we all suffer some of the same symptoms. Some of these ladies have had ED's since childhood and it breaks my heart. I pray they all get well. I do pray for myself as well, but I am having a difficult time believing I'll recover. It just seems so impossible. My therapist said it can take over a year to recover, sometimes longer. I think what happens is they keep me in program as long as I'm getting something out of it and then I graduate out of it and have an outside support team. I already have a regular doctor but she doesn't know anything about ED's. I have a psychiatrist who manages my medication for my anxiety and other mental issues. I have a dietitian who supports me in my food rehabilitation. All I will need is a therapist who specializes in ED's and they have recommendations. I don't know if my insurance will pay for the outside therapist. They don't pay for my dietitian. But the one at my Kaiser facility doesn't know about ED's so she's really no help except trying to get me to eat on a regular basis. I prefer the lady I have now who fusses at my ED and tells me I need to listen to my support team and not to the ED. 

So that's about it. My thrift store where I work is still closed, at least until the end of the month. We don't know if that will be extended into May or not. If the store reopens and I'm still in the 5-day program, I'll have a reduced work schedule. My manager is quite aware of that. My other assistant manager thinks my keys should be taken from me since I can't be there the majority of the time. To be honest, I'm not even sure I want to go back to work when they reopen. DH says let's cross that bridge when we come to it.

[Kassia]

Thank you so much for sharing.  I always look forward to your updates.  I've struggled with eating disorders for my entire life and have given up on ever getting better and can relate to so much of what you say.  It is hard work. 

I am in awe of your strength and determination to beat this.  Keep it up - we are here rooting for you.  

 

 

[PeterPan]

1 hour ago, Night Elf said:

The interesting thing is that I am starting to feel hunger when I eat every 3.5-4 hours. Sometimes as early as 2.5-3 hours. It's a weird feeling. 🙂

It sounds like you're making a lot of progress!! And to be doing this and making steps and improving while everyone is so stressed is AMAZING. 

1 hour ago, Night Elf said:

I prefer the lady I have now who fusses at my ED and tells me I need to listen to my support team and not to the ED. 

That seems like really good advice. I think we need to use that line in our house, telling ourselves to listen to what we know is true and good, not what our emotions are telling us at the moment.

1 hour ago, Night Elf said:

I do pray for myself as well, but I am having a difficult time believing I'll recover. It just seems so impossible.

Seems to me like you won't know how far you can get unless you keep trying. 

I haven't dealt with an ED, but it really does sound like you're making progress, all things considered. Good job!

[ktgrok]

Would it make sense to see a GI doctor to make sure there are not any physical components to this, that are playing into the mental health parts? Like, delayed gastric emptying is a real thing, and could explain what you are feeling. Even if you didn't start out with GI problems, you could have caused some indirectly with the disordered eating, you know? So it seems a good GI doctor who can be sure you have the right amount of stomach acid, are having normal gut motility, gastric emptying, digestive enzymes, etc might be super helpful. Also have you had lab work to check your nutritional status? Sometimes being low in say, certain vitamins, can cause lack of appetite or nausea or such. I know with my bariatric surgery for instance they were really big on getting enough thiamine as low thiamine can happen quickly when you don't eat enough, and can then cause nausea/lack of appetite/stomach pain/vomiting, which leads to not wanting to eat, etc. These are things that can be checked. 

I do NOT mean to diminish the mental health component. BUT....gosh darn it in this country we tend to go there with women without checking the physical. 

[Harriet Vane]

Hi Beth—I am so impressed at how hard you continue to work at this. Your commitment to health and wellbeing inspires me. Walking this path with that mix of boredom in hearing the same things over and over but still feeling uncertain of how all this works is tough! And totally valid. I trust that you are seeing things accurately. I like Katie’s suggestion for a GI doctor. You might find that more information will give answers and possibly reduce some of the anxiety or uncertainty. 
 

As for the thrift store, my one thought is that you posted many times about how much you enjoyed it. Did that change over time?

[Night Elf]

29 minutes ago, Ktgrok said:

Would it make sense to see a GI doctor to make sure there are not any physical components to this, that are playing into the mental health parts? Like, delayed gastric emptying is a real thing, and could explain what you are feeling. Even if you didn't start out with GI problems, you could have caused some indirectly with the disordered eating, you know? So it seems a good GI doctor who can be sure you have the right amount of stomach acid, are having normal gut motility, gastric emptying, digestive enzymes, etc might be super helpful. Also have you had lab work to check your nutritional status? Sometimes being low in say, certain vitamins, can cause lack of appetite or nausea or such. I know with my bariatric surgery for instance they were really big on getting enough thiamine as low thiamine can happen quickly when you don't eat enough, and can then cause nausea/lack of appetite/stomach pain/vomiting, which leads to not wanting to eat, etc. These are things that can be checked. 

I do NOT mean to diminish the mental health component. BUT....gosh darn it in this country we tend to go there with women without checking the physical. 

I had bloodwork done when I entered the program but it was as normal as during all my physicals I do in October of every year. Nothing new. The few tests they ran that I don't normally get were normal as well. I don't think they ask for another labwork with people in my level of care. If my insurance had approved for me to go to the next level, I'd be getting labwork done every 1-2 weeks. Having the center closed is hard. I can't take my blood pressure weekly because I don't have a monitor but my DH is weighing me once a week and texting it to my dietitian who then gives it to my therapist. So I'm happy they someone is monitoring my weight.

I haven't thought about real GI problems. I'm being told the physical symptoms I'm feeling are normal when normalizing hunger. I'll ask my therapist what she thinks. 

[Farrar]

I haven't commented on these threads, but I've been really impressed with how frank you've been. I can only hope it's helping others here. And I think your honesty with yourself and the world is probably very positive for your recovery.

The thing that stands out for me in your post is that you said "it feels like a non-eating day." I would just reflect to you that that's not something anyone I know ever says or would think. Basically just to reflect that this idea that there are some days when people don't eat (outside of purposeful fasting) is not a normal impulse and that makes me think that you probably aren't in touch with your body's real needs fully yet. I think if I were in your position, not being able to trust myself or my own impulses would be the hardest part, especially since they would feel so physical.

[Ausmumof3]

The thing about feeling the food sitting there like a ball stood out to me.  Might be worth checking there’s not something else going on.  

Im not a TCM follower but one thing I have seen them say that makes sense is to improve digestion try to eat warm food and drink warm drinks rather than cold.  I sometimes find mine is a bit sluggish and that helps . I know it’s woo and I’m not an eating disorder specialist so feel free to ignore it.  

[Karen A]

I "liked" your post because I admire how hard you are working. I think setbacks on the weekend are probably not unexpected, and am so glad you are pressing forward with healing. Thanks for sharing your journey.

[ktgrok]

2 hours ago, Night Elf said:

 

I haven't thought about real GI problems. I'm being told the physical symptoms I'm feeling are normal when normalizing hunger. I'll ask my therapist what she thinks. 

Honestly?A therapist, even one in eating disorders, doesn't have the expertise to say if there is a physical problem or not. She can say that many people with eating disorders have this sensation, or what not, but she can't rule out a physical problem. Only a GI doctor can do that. 

I'd hate hate hate for you to work so hard, and have an extra roadblock you didn't even know was there. Or to be blaming yourself for something when part of the issue is physical, you know? 

In veterinary medicine, we are trained that when there is behavioral problem to ALWAYS fully explore all the possible physical contributions first. Not that there has to be a physical reason, or that even if there is a physical problem that it is the sole cause, but that they can go hand in hand. And that you can't fully address and treat the behavioral component without handling the physical part. 

For whatever reason, I'm finding that human medicine and mental health providers do NOT have the same approach...yet. Hence a board member here whose daughter was told she had "anxiety" for years, when it turned out her heart was racing not from anxiety but from anemia! Or my son whose OCD and Anxiety and yes, eating issues,  were at least partly caused by a combination of Celiac and then PANDAS. 

(also, make sure you've been screened for celiac - it can cause stomach pain, and mental health problems. Not saying that a physical problem started all this, maybe, but probably not, but could be exacerbating it. And it could impact treatment.)

[Kassia]

1 hour ago, Ktgrok said:

 

I'd hate hate hate for you to work so hard, and have an extra roadblock you didn't even know was there. Or to be blaming yourself for something when part of the issue is physical, you know? 

 

 

That's a good point.  Many years ago, I was prescribed Prozac for my eating disorder and it provided relief fairly quickly.  It changed the way I viewed myself when I struggled because I realized it wasn't all a matter of willpower and determination, it was also a brain chemical issue.  Unfortunately, the effects of the prozac wore off.  I was switched to Paxil, but that didn't do anything for me.  

 

 

[bensonduck]

Hi there. It’s wonderful you are getting help and I wish you all the best with your recovery. I am recovering as well (I don’t know when to say I am recovered - although I’m weight restored sometimes I still struggle with thoughts and urges to engage in behaviors). I had a couple of thoughts for you - please feel free to discard if not helpful. 
1) you know about extreme hunger right? That’s totally normal and not a binge. It’s impossible to binge in eating disorder recovery. Your body is trying to get those calories. It stops more quickly if you just continue with your meal plan and eat the next meal. And the next. If you start skipping and skimping the extreme hunger will be harder to get rid of. Just go with it. Look at your meal plan as a minimum. Not a maximum. If you want 3 pieces of chicken instead of 1, have them!

2) ask your team if you can replace 1 meal with a drink as long as it meets the exchanges as an intermediate step to help with the full feeling. Sometimes drinking a smoothie is easier than eating all that food. 

3) I am so familiar with the full belly panicking. Sending hugs. It is so hard. Make sure you’re warm (wrap up in a blanket, wear a comfy hoodie - studies have shown this improves ED outcomes) and find something to occupy your mind for 20-30 minutes after your meals at home. Watch a favorite tv show or a movie, play an engaging game, read some fiction, do something to get your mind off of it.  I know someone that used to play a strategy board game every night with her DH for months and months for this exact reason. Hard to think about being full when you’re trying to plan out how to win. 
 

best of luck to you in your recovery. You can do this!!!

[Rosie_0801]

6 hours ago, Farrar said:

The thing that stands out for me in your post is that you said "it feels like a non-eating day." I would just reflect to you that that's not something anyone I know ever says or would think. Basically just to reflect that this idea that there are some days when people don't eat (outside of purposeful fasting) is not a normal impulse and that makes me think that you probably aren't in touch with your body's real needs fully yet. I think if I were in your position, not being able to trust myself or my own impulses would be the hardest part, especially since they would feel so physical.

 

Or it could be a symptom of anxiety, which Beth also struggles with. I don't have an eating disorder, but I frequently struggle to eat before 3pm due to stress.

Beth, I don't know if this would bugger up your prescribed eating plan, but when I'm at the non-eating part of my trauma cycling, fibre is my main problem. Maybe you can work with your support team to create alternative low fibre meals as a compromise for your non-eating days.

[kiwik]

My only thing is to remind you that guilt around eating is part of the disorder not an indication that you have done something terrible.

[Night Elf]

Thank you for all the feedback. That's why I post here. I'm hesitant to  go to the doctor at this point in time due to the virus. I do not feel I have GI issues as I have no other symptoms than just feeling really full after a meal. Now remember, I did not eat much in one sitting before treatment. Dinner would be 2 oz of meat, 1/4 cup cooked veggies, and 1/3-1/2 cup of potatoes or rice. Our Hello Fresh meals were meant to be served in certain ways but I always broke them down into components so I knew how much I was eating. If I felt hungry, this was enough food to make me feel comfortably full but not overly full, which is a feeling I do not like to have. My  current meal plan has me eating more than this in one sitting. I'm taking in more calories too, eating higher calorie foods like peanut butter which was a no-no food for me before. So I think it's natural I feel the food sitting inside of me after eating. I feel like I've stuffed myself. My DH insists I never eat enough to really feel stuffed, and he wonders if this is part of my distorted thinking. On a scale of 1-10, I usually end up an 8 which is full but not uncomfortable and can wait a few hours before the next meal. That's the number they hope we land on with each meal. I usually do but I feel full! Just not sick.

As far as saying non-eating day, that's an ED thing. I fight it because my inclination is to restrict, either to skip the meal altogether or eat as little as possible. I've done very well in reducing the number of meals that I practice that disordered behavior. It's not all gone though. I'm slowly getting there. At those times, that is when my treatment team says to eat mechanically. It doesn't matter if I'm hungry or not. It's time to eat and fuel my body. I hate that part of it because I don't like eating when I'm not hungry, but they reassure me this is retraining my hunger and fullness cues.

Thank you bensonduck. I hear those things from my team as well. As for a drink, what they want is for us to eat food first. Then if we can't eat anymore, or refuse for whatever reason, we have to supplement with a protein drink. They use Boost at the center but at home I use Carnation Breakfast drink. DH and I compared them side by side and they're essentially the same and I know I like Carnation so I stuck with it. I had to do this yesterday. I had a frozen meal that I just didn't care for, so I ate as much as could, about 75%, then supplemented with the protein drink. I do know ladies in my group who will drink a smoothie for snack. I just don't know how my dietitian would feel about a meal replacement. I'll ask her. I never make smoothies so that would be something new for me.

[Miguelsmom]

This is going to sound scary and I'm sorry. I made no progress on my eating disorder until I was on viibryd. I needed a low dose antipsychotic to get rid of the pesky ED voice and make me hungry. I still don't eat "regularly" but I maintain body weight. I eat 2 meals a day + snacks. All my therapist I've told I do not want to work on my ED issues. So we work on other issues as they resolve I get better.

[Night Elf]

1 hour ago, Miguelsmom said:

This is going to sound scary and I'm sorry. I made no progress on my eating disorder until I was on viibryd. I needed a low dose antipsychotic to get rid of the pesky ED voice and make me hungry. I still don't eat "regularly" but I maintain body weight. I eat 2 meals a day + snacks. All my therapist I've told I do not want to work on my ED issues. So we work on other issues as they resolve I get better.

Hmm.. I'm sorry to hear that. I hope that's not my case! I'm bipolar and GAD and am on 4 different meds to manage those. I'd hate to have to add another which could alter my current cocktail. There's a scary thought!

[katilac]

23 hours ago, Ktgrok said:

Honestly?A therapist, even one in eating disorders, doesn't have the expertise to say if there is a physical problem or not. She can say that many people with eating disorders have this sensation, or what not, but she can't rule out a physical problem. Only a GI doctor can do that. 

I'd hate hate hate for you to work so hard, and have an extra roadblock you didn't even know was there. Or to be blaming yourself for something when part of the issue is physical, you know? 

Eating disorders very frequently cause gastroparesis, and the first line of treatment is increasing calorie intake, improving nutrition, and eating multiple meals per day. Improving nutrition and eating multiple times per day are the usual first steps no matter what the cause of gastroparesis, so it sounds like she is doing exactly the right thing whether she has it or not. 

They can't dx medical conditions, but gastroparesis goes hand-in-hand with eating disorders, and they will have had tons of experience dealing with it and knowing how long it can take to resolve. They're telling her to do exactly what a gastro would tell her to do with a dx. 

On 4/13/2020 at 8:39 AM, Ktgrok said:

 Like, delayed gastric emptying is a real thing, and could explain what you are feeling. Even if you didn't start out with GI problems, you could have caused some indirectly with the disordered eating, you know? So it seems a good GI doctor who can be sure you have the right amount of stomach acid, are having normal gut motility, gastric emptying, digestive enzymes, etc might be super helpful. Also have you had lab work to check your nutritional status? Sometimes being low in say, certain vitamins, can cause lack of appetite or nausea or such. I know with my bariatric surgery for instance they were really big on getting enough thiamine as low thiamine can happen quickly when you don't eat enough, and can then cause nausea/lack of appetite/stomach pain/vomiting, which leads to not wanting to eat, etc. These are things that can be checked. 

Yes, the ED can cause many GI problems. It makes perfect sense to treat the ED first. If you're lacking vitamins, if you are digesting slowly, if you have stomach acid, then the first thing any doctor is going to tell you to do is improve your nutrition and eat frequent meals. You have to do this for a certain amount of time before specific testing is going to be helpful. 

I'm being emphatic, but I'm not trying to pick on your posts. I agree that, in general, it's a good idea to look for underlying physical issues - but, with disordered eating, GI symptoms of all kinds are to be expected and are so deeply entwined with the ED that you must treat that before it's possible to tell what might persist and have a different cause. I don't want Beth to doubt her plan or lose motivation, so I'm really trying to emphasize that this treatment plan is a great idea whether she has these other issues or not. 

Edited April 14, 2020 by katilac

[ktgrok]

1 hour ago, katilac said:

Eating disorders very frequently cause gastroparesis, and the first line of treatment is increasing calorie intake, improving nutrition, and eating multiple meals per day. Improving nutrition and eating multiple times per day are the usual first steps no matter what the cause of gastroparesis, so it sounds like she is doing exactly the right thing whether she has it or not. 

They can't dx medical conditions, but gastroparesis goes hand-in-hand with eating disorders, and they will have had tons of experience dealing with it and knowing how long it can take to resolve. They're telling her to do exactly what a gastro would tell her to do with a dx. 

Yes, the ED can cause many GI problems. It makes perfect sense to treat the ED first. If you're lacking vitamins, if you are digesting slowly, if you have stomach acid, then the first thing any doctor is going to tell you to do is improve your nutrition and eat frequent meals. You have to do this for a certain amount of time before specific testing is going to be helpful. 

I'm being emphatic, but I'm not trying to pick on your posts. I agree that, in general, it's a good idea to look for underlying physical issues - but, with disordered eating, GI symptoms of all kinds are to be expected and are so deeply entwined with the ED that you must treat that before it's possible to tell what might persist and have a different cause. I don't want Beth to doubt her plan or lose motivation, so I'm really trying to emphasize that this treatment plan is a great idea whether she has these other issues or not. 

I don't feel picked on at all - that's exactly the kind of thing I was thinking of, and I'm really glad to hear that what she is doing is the first line treatment! And that ED specialists are aware of how to handle it! 

Especially given the lock down!

Beth, I'm also glad to hear it is just "full" and not actually painful or nausea or anything. If that is the case, it does sound like they have you in good hands. And especially knowing they already did labwork to check nutritional status. Those were the two things I was concerned about, and it seems both are being addressed. 

[Night Elf]

Here's a new twist. Saturday through Monday were bad days. My anxiety was up and I had trouble following my meal plan and eating 100% of my food. I just couldn't snap out of it. Today started off better. I didn't have anxiety this morning when I had breakfast and was able to eat my full meal without any problem. Then later in the morning, my period started. I am in perimenopause and my periods are beginning to get a little irregular. My LMP was 25 days ago. My regular interval is 28-29 days. I didn't even realize what time of the month it was. So, could the extra anxiety beginning this weekend that resulted in poor eating be exacerbated by my cycle about to begin? 

I must say today has been pretty good! I've eaten every meal and snack and my anxiety never got above a 2, which on my scale is 'slightly bothered but can shake it off'. Usually my anxiety is about a 4 or 5. This past weekend it hit 9 once. I am just finishing my coffee after having had a very pleasant dinner. DH told me to please remember how good I'm feeling so that on my next bad day, I'll remember I am making progress and do have some good days.

[maize]

Yes, the extra anxiety could definitely have been a symptom of PMS.

Glad you are feeling better today!

[Selkie]

Beth, I have OCD and it has always gotten much worse right before my period. I'm 50 and had gone for several months without a period and was hoping that maybe I was done. Then, the other day, I felt my OCD trying to rear its head in a way it hadn't done for a long time. I was really having to work to squash it down. Then, guess what showed up the very next day? Yep. Lightbulb moment: Oh, now it all makes sense why I was feeling so anxious!

I'm glad you're feeling better.

[fairfarmhand]

Yes! I have massive anxiety in the day or two or three before my period starts. Along with the migraines and massive bleeding, that’s one reason they have me on bcp skipping the placebo pills and trying to avoid having periods at all. 

[Miguelsmom]

12 hours ago, Night Elf said:

Hmm.. I'm sorry to hear that. I hope that's not my case! I'm bipolar and GAD and am on 4 different meds to manage those. I'd hate to have to add another which could alter my current cocktail. There's a scary thought

I'm on 2 medications and a prn for BP+, & GAD. I would say talk to your dr because for me when my ED flares more my BP+ or GAD is not under control. 

[Night Elf]

6 hours ago, Miguelsmom said:

I'm on 2 medications and a prn for BP+, & GAD. I would say talk to your dr because for me when my ED flares more my BP+ or GAD is not under control. 

Everyone on my treatment team knows I have those issues and I'm being monitored closely by my psychiatrist. But thank you. I agree our doctors need to know everything in order to help us in the best way possible. My psychiatrist increased one of my anxiety meds when I was having a hard time in treatment and it has helped. It didn't get rid of my anxiety completely but it did make a significant difference.