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Refeeding Syndrome in Restrictive Eating Disorder Recovery

This is an extremely important post for those recovering from a restrictive eating disorder, so please take notice of this, as many of those recovering from REDs are unaware of RFS.

A lot of the text below is taken from the MARSIPAN: Management of Really
Sick Patients with Anorexia Nervosa (October 2010). It is very wordy so I took the most relevant parts to bring to your attention, but you can click the link above for the entirety of the MARSIPAN Guidelines. The text from MARSIPAN is referenced as so.

Firstly, I am going to share with you a simplified version of what refeeding syndrome is and how to recognise it.

Refeeding syndrome symptoms may occur when a person receives a large intake of carbohydrates following a period of starvation.

A severe shift in electrolytes takes place when an individual consumes a quantity of complex carbohydrates after a prolonged period of food deprivation. This in turn, causes fluid imbalances in the body, leading to the potentially fatal conditions of hypophosphatemia and heart failure.

Hypophosphatemia refers to an abnormally low concentration of phosphates in the blood stream. This is linked to the transport and cellular uptake of phosphorus and potassium due to excess insulin secretion. Refeeding syndrome symptoms arise when the malnourished person no longer needs to utilize stored fat and protein, and instead metabolizes carbohydrates. The resulting rapid discharge of insulin causes the drop in serum phosphate, producing the clinical symptoms of refeeding syndrome.

Unfortunately, certain early signs of refeeding syndrome may go undetected as they are somewhat unspecific. However, symptoms such as generalized weakness, seizures, muscle fibre breakdown, white blood cell dysfunction, low blood pressure, respiratory failure, arrhythmias, cardiac arrest, and sudden death have all been documented as part of this serious and even fatal syndrome.

Refeeding syndrome symptoms can be of concern to those recovering from eating disorders such as anorexia, as they are at risk of developing hypophosphatemia when starting to eat again. Medical supervision and monitoring by nutritionists and other health professionals familiar with this condition can help improve the outcome for those individuals struggling to re-gain normal eating behavior. (from here)

Below I share information that goes into far more detail in regards to refeeding syndrome, taken from the MARSIPAN guidelines, and the online Nursing Centre – this is quite complex and detailed information regarding refeeding syndrome in a hospital setting.

Re-feeding syndrome is a potentially fatal condition (World Health Organization, 1999; Winston et al, 2000; Crook, 2001; Casiero & Frishman, 2006; Mehanna et al, 2008) that occurs when patients who have had their food severely restricted are given large amounts of food via oral or nasogastric re-feeding as well as during TPN. It has been noted in outpatients with anorexia nervosa who have suddenly increased their food intake after several weeks of starvation. (MARSIPAN)

For example, someone who has been almost nothing could decide to recover and start eating a regular amount of food straight away. Their serum phosphate level could then fall dangerously and require oral phosphate supplements to correct this abnormality.

Electrolyte disturbances (primarily decreased levels of phosphorus, magnesium, or potassium) occur immediately upon the rapid initiation of refeeding-commonly within 12 or 72 hours-and can continue for the next 2 to 7 days. Cardiac complications can develop within the first week, often within the first 24 to 48 hours, with neurologic signs and symptoms developing somewhat later. (from here)

Re-feeding syndrome is characterised by rapid reductions in certain electrolytes, such as phosphate and potassium, caused by rapid transport into cells, and the resulting cardiac effects can be fatal. Avoidance of the syndrome can be achieved by gradually increasing nutritional intake. There is substantial variation in opinion about the level at which to start re-feeding a patient with anorexia nervosa. Some units follow NICE (2006) guidelines for adult nutrition support, which recommend starting at 5kcal/ kg/day for a patient weighing 32kg. Although the guidance excludes eating disorders, it is considered by some to be relevant to patients with severe anorexia nervosa. However, there is wide variation in its application, some physicians and dieticians applying it strictly and others regarding it as not applicable to this patient group. One of the very few published guidelines in this area from the USA, referring to the treatment of children with anorexia nervosa (Sylvester & Forman, 2008, p. 393), advises: Patients start on 1250–1750 calories, depending on the patient’s intake prior to hospitalization and severity of malnutrition, and advance by 250 calories daily. For patients with very low weight (<70% average body weight), the protocol is altered and caloric intake requirements may be decreased to avoid re-feeding syndrome, and advancement takes place over a longer period. (MARSIPAN)

Sometimes physicians are torn between the risk of re-feeding syndrome, and the risk of further weight loss due to not eating enough which then could mean death. In addition;

One physician in the group suggested that it was perhaps less harmful to risk re-feeding syndrome, which can be monitored and corrected, than brain damage and death caused by low glucose in a patient with hypoglycaemia. It was also commented that if higher calorie levels were thought to be essential (e.g. to correct low glucose), a critical care approach with constant monitoring and correction of abnormalities should be considered. (MARSIPAN)

When it comes to dangerously sick patients with anorexia nervosa, the risks have to be weighed up and a decision reached as to what is more dangerous for the patient who is in a life-threatening condition. On the subject of avoidance of re-feeding syndrome:

Avoidance of re-feeding syndrome can also be encouraged by restricting carbohydrate calories and increasing dietary phosphate. When patients are prescribed oral or enteral nutritional supplements, consideration should be given to the use of high-calorie supplements (e.g. 2kcal/ml) as they have lower levels of carbohydrate and may therefore be less likely to produce re-feeding syndrome. Moreover, the diet should be rich in phosphate (e.g. milk) to help avoid the syndrome. The total fluid intake can easily exceed safe levels, and the recommendation is 30–35ml/kg/24h of fluid from all sources. (MARSIPAN)

Remember that the MARSIPAN Guidelines described above are based in a hospital setting.

As for more understanding on what refeeding syndrome is:

To understand what happens during refeeding syndrome, first review the pathophysiology of malnutrition. Normally, glucose is the body’s preferred fuel, coming from the intake of carbohydrates. As the malnourished body loses access to carbohydrates, it shifts to catabolism of fat and protein. With this shift, the body’s production of insulin drops in response to a reduced availability of glucose. This adaptive change to protein breakdown during prolonged malnutrition also leads to a gradual loss of cellular and muscle mass, often resulting in atrophy of vital organs and other internal structures, including the heart, lungs, liver, and intestines.
Serious complications may occur as respiratory and cardiac function declines due to muscular wasting and fluid and electrolyte imbalances. Metabolic rate, cardiac output, hemoglobin levels, and renal concentration capacity also decrease.
The body is now surviving by very slowly consuming itself…
When a malnourished patient is given aggressive nutritional support, such as PN, a number of events ensue. These are primarily driven by the change in insulin secretion as a result of the shift from protein metabolism to carbohydrate metabolism. The increase in glucose levels, which results from the composition of the nutritional support formula, increases insulin release by the pancreas. This in turn promotes cellular uptake of glucose along with electrolytes, primarily phosphorus, magnesium, and potassium. The result can be a life-threatening depletion of these vital electrolytes. (from here).

Also,

[RFS] is extremely rare but is more likely to occur in a young person with rapid weight loss and a BMI – from here.

As said above, refeeding syndrome is rare. People at risk are generally people are underweight, and have severely restricted for a week or more. However, if you have been eating less than 1000 calories for a week or more, are excessively exercising, or have been purging frequently, you may be at risk of re-feeding syndrome, regardless of BMI. If this is the case please see a doctor to determine the risk of RFS. Depending on your risk you may be hospitalised to be monitored there, you may be monitored by your doctor, or you may be okay to go home and just get your parents or flatmates to keep an eye on you.

You are most at risk in the first 24-72 hours, so don’t panic if you have upped your intake quickly and were not aware of RFS and have been eating a normal amount for a couple of weeks. You will be out of the danger zone by now.

Milky products are also really good for those with lowered phosphate levels, and are easier for the body to absorb.

As said above, there is also a problem with people being over-cautious and not increasing by enough or fast enough. If you are being monitored in a hospital setting, the staff there will decide what your calorie increase rate is. If you are home and have been deemed to be at very low risk, I advise increasing your calorie intake by 250 calories every 2-3 days until you reach 2000 calories. From there it is safe to jump to your 2500-3000+ calories.

As for a more in-depth look at warning signs and symptoms:

First, let’s look at some normal functions of phosphate. It’s needed to produce adenosine triphosphate (ATP), which provides energy for almost all cellular functions. Phosphate is an essential part of RNA and DNA, and it’s needed in red blood cells for 2,3-diphosphoglycerate production for easier release of oxygen to the tissues. Patients with signs and symptoms of hypophosphatemia or phosphate levels below 2 mg/dL require oral or I.V. phosphate replacement.

Refeeding-induced severe hypophosphatemia (serum concentration less than 1 mg/dL) can result in respiratory failure from a decrease in available ATP, which is needed to maintain the diaphragm’s normal contractility. In addition, hypophosphatemia can cause red and white blood cell dysfunction, muscle weakness, and seizures. Other factors that can contribute to hypophosphatemia include vitamin D deficiency and excessive intake of antacids, which block phosphate absorption.

Hypokalemia (serum levels below 3.5 mEq/L) and hypomagnesemia (serum levels below 1.8 mg/dL) are also frequently associated with refeeding syndrome. Mild decreases of potassium and magnesium may cause nausea, vomiting, constipation, diarrhea, muscle twitching, or weakness. A more severe depletion of the serum concentrations of potassium and magnesium can cause dysrhythmias, cardiac dysfunction, skeletal muscle weakness, seizures, and metabolic acidosis.

Your patient with refeeding syndrome may develop muscle weakness, tremors, paresthesias, and seizures… In addition, she may have cognitive changes, including irritability and confusion. (from here)

Please take note of this post. Although rather dry, it is very important.

Feminism and Recovery from a Restrictive Eating Disorder

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In recovery from my eating disorder, feminism has been one of my best friends, along with the body positivity movement, which I shall focus more specifically on in my next post. Feminism is a movement that believes in equality between men and women. I am aware that there are various different subsections of feminism, but to me, feminism only has one definition: equality between men and women, which includes all races, genders, and sexualities. Equality, between everyone, everywhere.

My partner between the ages of 19 and 21 was a feminist. He was passionate about politics, and although that didn’t interest me much at the time, my curiosity grew as I entered recovery. I’ve always believed in equality and so at heart have always been a feminist, but my real understanding of it and the way inequality had effected me personally dawned on me throughout recovery as I studied it more closely and became involved with it as a movement. I found that it had an impact in all areas of my life, not least in my recovery from my eating disorder.

Feminism empowered me as a woman, and as a person. It told me I could be who I wanted to be. It told me I did not have to be limited in the activities that I do, or the things that I am interested in. It told me I could wear whatever I wanted to wear. It told me that I did not have to conform. It told me that my body could be any shape, size, or weight, and still be not only acceptable, but beautiful. It told me that I am allowed to feel proud and strong and that no one has the right to try and bring me down. It told me that I hold as much worth as everyone else around me. This applies not only to women, but to men too. Feminism also taught me a whole lot about the sexism that exists around us all of the time in our every day lives – things you may not have even noticed, like casual jokes, or comments that put down women without us even realising it (“you scream/hit/run/etc like a girl” – as if being a girl is a bad or lesser thing, or “grow a pair” – like being a man is a stronger or better thing).

Feminism is also extremely body-positive. It tells you that you can wear what you like, regardless of your weight, shape or size. It tells you to be proud of your body. It tells you that you can shave, or not shave, and that doing either is fine. It tells you that you can have short hair or long hair, that you can wear make up or go make up free, that you can wear a bra or not. It tells you that you can choose to do whatever you want with your own body, and that you can display it how you like. It tells you that you can be short, tall, fat, thin, black, white, man, woman, redhead, brunette, flat-chested, big-breasted, and so on and so forth, and be a beautiful, proud, confident person. You can have any type of body and accept it how it is and recognise that others should also.

Feminism taught me to embrace my body. My body is strong. It has kept me alive and has enabled me to be well again. It carries me and everything inside me. It enables me to go on countryside walks and play badminton with my friends. It is the strength to move furniture around and carry anything at all! It lets me see and touch and smell and hear and taste. It works every day to keep me as healthy as it can, and I work with it to do the same.

It also taught me that I am not just my body. I am a daughter, sister, friend, writer, reader, artist, photographer, poet, determinist, feminist, liberal, listener, warrior, traveller, baker, film buff, dreamer, and so much more. My body is fabulous, but it doesn’t define who I am. Feminism helped me to realise what is important and it helped me to realise what I am passionate about too.

Feminism planted a seed of power and confidence inside me, and it has been growing every since. It helped me to feel strong when I was feeling weak. It helped me to feel more positively about my appearance when I was struggling to look in the mirror. It helped me to appreciate my body when I was berating it. It helped me to fight when I wanted to give up. It helped me to develop pride in myself as a person when I was feeling worthless.

Feminism was invaluable to my recovery. I’m so thankful that I became aware of the movement when I did. Maybe it can help you too.

The Truth About Domestic Abuse

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Today I am going to post about a topic that is not specifically to do with eating disorders. I wrote this article over a year and a half ago, but it is an extremely important subject matter for me, and in general, so I wanted to share it here. Although it isn’t directly to do with eating disorders, there are those who may have had an eating disorder triggered by domestic abuse. I want to state that that was not the case for me, but that some of you that may have unfortunately been the trigger.

Obviously this article comes with a trigger warning for the discussion of domestic abuse.

The Truth About Domestic Abuse

When you hear the words “domestic abuse”, and visualise the abuser, what probably comes to mind is a man. Most likely a man who is working class: a man who has tattoos, bad teeth, sunken eyes, and a haggard face. That, or something similar, anyway. It is this sort of stereotyping that leads us, as a society, to believe that domestic violence only happens amongst certain types of people. This is most certainly not the case, and the issue of domestic violence amongst different races, ages, sexual orientations, religions, and genders needs to be openly addressed so that people are more aware that domestic abuse can happen to anyone, anywhere, at any time.

My abuser was a skinny, sixteen-year-old boy from a privileged background. Unfortunately for me, he was the first boy I ever loved.
His abuse came in many forms. It started almost straight away: the first incident that I can remember happened three months into our relationship, and progressed from emotional and verbal abuse to physical abuse within three months. It started off with intense jealousy and possessiveness: he would accuse me of cheating, and attempt to monitor what I wore, especially when it came to posting photos to my Bebo account. If I uploaded a photograph and my skirt was too short he would phone me in a fury, calling me a slut and demanding that I took the images down. For some reason, I had given him my password to my account, and one of the times that he flew into a rage, he deleted my entire account. He frequently called me a bitch, a liar, and a whore, and did not want me to hang out with any male friends. He constantly wanted to know where I was, who I was with, and what I was doing. He expected me to report back to him on my day and the details of it, especially if it concerned another boy. I also strongly recall a situation where he humiliated me in front of a number of people: we were at college, and there was a day where everyone could take a free chlamydia test. Before me, he had not been sexually active, whereas I had, but we both took a test anyway. After a group of us had taken the test, we were sitting in the corridor writing our details down, and he told everyone that if he had something, it was from me. I was utterly shocked that he had decided to even mention it, let alone in front of a group of people. He also broke my personal belongings, especially those of significant emotional value, when I upset or angered him, and used threats of suicide or self-harm against me.

After six months, the abuse became physical. Over the next two years I experienced being thrown into walls or onto the ground, being pinned to the floor, having objects thrown at me, being spat at in the face, being squeezed until I could not breath, being choked, grabbed, and pushed, and all the while I thought it wasn’t serious enough because he never actually hit me. Half of me fought that ridiculous notion, but it was echoed in the actions of others, especially that of his family, who were of the opinion that it was my fault because I wound him up. At one point I was even told by his step-dad to “get over it” because my refusal to speak to my abuser was “making the atmosphere in the house horrible”.
On one occasion, he was hanging off a multi-storey carpark, after running off with my bag, pushing me, throwing my bag into a wall with valuables inside, and tearing a necklace off of me, causing bright red scratches down my throat. I also wish to add that there were people walking past us who witnessed his assault, and did nothing about it. Another time, he accused me of being unfaithful when I did not rip out the male centrefolds in my Cosmpolitan magazine, which resulted in my being on the floor, him on top of me, with his hands around my neck, screaming that I was a bitch and a whore, and ended with him running out of the house threatening to ride his moped into the middle of the road without putting on the brakes. I previously attempted to stop him leaving, sobbing, and grabbing onto his clothes, begging him not to kill himself. He pushed me onto the floor, and later claimed that this was my fault because I would not let go of him (which may have been annoying, yes, but I’m sure in that situation it was perfectly understandable, as I naively believed he really would end his own life). Another argument concluded in the entire bedroom being destroyed: all my possessions had been swiped onto the floor, the speaker stand was through our coffee table, and there was paint all over the carpet. I had been physically thrown out of the room but had returned to continue the argument (and therefore, obviously, making it all my fault – please note the sarcasm there) and was forcefully carried to the bed and then briefly choked. My worst memory, though, took place in a hotel. I cannot remember it in detail, although I am not sure if that is because my mind blocked it out or whether there were just so many incidents that that particular one has faded from my memory. What I do recall though was my bag being flung into the pool, being forcefully carried to the elevator and then to our room, my phone being dangled above the toilet in one of his hands, and being held away with the other, and the grin on his face as he let it drop. I also remember being pinned down on the bed with him sat on my stomach; his knees pressing into my forearms so that I could not move, except for my uselessly flailing legs. I’m not sure what happened subsequently to that (not anything horrifically brutal though, I can assure you of that much), but after the whole ordeal was over, I was left with a severe burn-like mark on my arm and a couple of other bruises elsewhere. To this day if anyone, even in jest, tries to restrict me in that position, I panic.

Why did you stay with him? you might ask. The truth, which I am ashamed to admit, is because I did not think it was bad enough to leave. I rationally knew that what I was experiencing was domestic abuse, but I kept thinking that I was a perpetrator too; that I was partly to blame, and because I did not fear him, I believed that I was not a victim. The abuse was emotionally destructive, horribly distressing, and extremely hurtful, but apart from the first few times that the physical violence occurred, I was never really afraid of him, and that, to me, made my experiences invalid. This, obviously, is completely untrue. I know this, and still even now I sometimes downplay what happened to me for fear that someone may accuse me of making a big deal out of nothing. I can assure you, though, that it wasn’t nothing. In fact it was something that had a huge impact on me, and unfortunately I am sure still does, even when I am not really aware of it.
I also naively believed that he would stop. On most occasions, afterwards, he would cry and tell me to leave him, or promise that it would never happen again, but of course it did. It always does.

My abuse was a long time ago but it left scars. I flinch sometimes around people, I get tense in certain situations, I panic if someone has me in one particular position, and I jump at loud or sudden noises. I even find men who look like my abuser uncomfortable to look at.

The thing is, a huge amount of people seem to believe that abuse is just physical, when it is not. There also seems to be people that believe that if you have never had your partner’s fist in your face then it doesn’t count. “But he never actually hit you, did he?” was genuinely something that I have had said to me, after opening up about my abuse. I cannot stress enough that any kind of physical violence is domestic abuse. Verbal abuse, emotional/psychological abuse, and sexual abuse are all forms of domestic abuse, in addition to physical violence. The US Office on Violence Against Women (OVW) defines domestic violence as a “pattern of abusive behaviour in any relationship that is used by one partner to gain or maintain power and control over another intimate partner”. (Wikipedia, 2013). People need to be aware that this is about control, not about violence, and does not necessarily include getting physical. People also need to be aware that whilst 85% of domestic abuse victims are women, 15% are men.

Domestic abuse is never okay. Ever.

Do not allow yourself to be treated without the respect that you deserve.
Do not let anyone tell you that what you deserve is an abusive partner.
Do not let your partner convince you that this is the last time, because it is not.
Do not let domestic abuse make you live in fear, misery, or silence.
Do not let domestic abuse endanger your life.

Do get out of your abusive relationship. There is much, much more awaiting you in life.

Please read below if you think you may be in an abusive relationship.

You may be in an emotionally abusive relationship if your partner:

Calls you names, insults you or continually criticizes you.
Does not trust you and acts jealous or possessive.
Tries to isolate you from family or friends.
Monitors where you go, who you call and who you spend time with.
Does not want you to work.
Controls finances or refuses to share money.
Punishes you by withholding affection.
Expects you to ask permission.
Threatens to hurt you, the children, your family or your pets.
Humiliates you in any way.

You may be in a physically abusive relationship if your partner has ever:

Damaged property when angry (thrown objects, punched walls, kicked doors, etc.).
Pushed, slapped, bitten, kicked or choked you.
Abandoned you in a dangerous or unfamiliar place.
Scared you by driving recklessly.
Used a weapon to threaten or hurt you.
Forced you to leave your home.
Trapped you in your home or kept you from leaving.
Prevented you from calling police or seeking medical attention.
Hurt your children.
Used physical force in sexual situations.

You may be in a sexually abusive relationship if your partner:

Views women as objects and believes in rigid gender roles.
Accuses you of cheating or is often jealous of your outside relationships.
Wants you to dress in a sexual way.
Insults you in sexual ways or calls you sexual names.
Has ever forced or manipulated you into to having sex or performing sexual acts.
Held you down during sex (without your consent).
Demanded sex when you were sick, tired or after beating you.
Hurt you with weapons or objects during sex (without your consent).
Ignored your feelings regarding sex.
Involved other people in sexual activities with you (without your consent).

If you answered ‘yes’ to these questions you may be in an abusive relationship; please call the National Domestic Violence Hotline at 1-800-799-SAFE (7233), 1-800-787-3224 (TTY) or your local domestic violence center to talk with someone about it.