344: Oedema and Eating Disorder Recovery

Chris Sandel: If you want access to the transcript, the show notes, and the links talked about as part of this episode, you can head to www.seven-health.com/344.

Hey, everyone. Welcome back to another episode of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist and a coach and an eating disorder expert, and I help people to fully recover.

Before we get on with today’s show, I just want to say that I’m currently taking on new clients. If you are living with an eating disorder and you want to fully recover, I would love to help. And I know for many people, full recovery can feel like a pipe dream or this fantasy, but I truly believe that everyone can fully recover, and that if you do the things that are necessary, it’s not that it might happen – it will happen. This is true whether you’ve been living with an eating disorder for a matter of months or a year all the way through to you’ve been living with an eating disorder for multiple decades.

So irrespective of how long this has been going on, I truly believe that you can fully recover. So if you want help in making that a reality, then I would love to support you as part of this. You can send an email to info@seven-health.com and just put ‘coaching’ in the subject line, and I can get the details over to you.

On with today’s episode. Today we are looking at oedema in eating disorder recovery. This is something that is very common. I struggle to think of a client that didn’t experience this because it is really a part of recovery and is essential as part of recovery. For some people it can be more minor and for a shorter amount of time, and for others it can go on for a much longer period.

It is one of those things that in some ways feels like a cruel thing to have happen. You’ve fought so hard to start eating more and now your body is feeling swollen and uncomfortable. And I know for a lot of people this can feel discouraging; I know the eating disorder can start to chime in and say “We must be doing something wrong, we’re gaining weight too quickly, we’re eating too much food”, all the kinds of eating disorder thoughts.

So what I want to do as part of this episode is just explain what oedema is, why it occurs, what is the common trajectory with it – “this is the short amount of time it occurs, this is the longer amount of time it occurs” – when you should be seeking some medical support with it just to check things out and make sure there’s nothing that is untoward and there’s nothing extra that you could be doing from a medication standpoint or that there’s another diagnosis that I will talk about as we go through this. So just really helping you to understand what’s going on with oedema and why it’s going on.

00:03:02

What is oedema + why does it occur?

If we’re looking at, to start with, what oedema is and why it occurs, oedema in a very simple sense is fluid retention that leads to swelling. This swelling can be in the hands, in the feet, in the ankles, sometimes in the face or abdomen. But really it can be swelling in any part of the body.

The thing with oedema – this is different to weight gain, to fat gain, to your body putting on muscle. It is water, and it is water that is then making these changes. And it is not permanent, this water retention that is going on, but is part of the recovery process.

So why does oedema occur? There are a number of different reasons why this can occur.

One, malnutrition disrupts fluid balance. Before I go any further, I just want to clarify what I mean by malnutrition, because we’re probably going to come back to it a number of times as I go through this. Malnutrition doesn’t just mean someone who matches up to the stereotype of a prisoner of war or what we think of as someone with severe anorexia. You can have malnutrition all across the weight spectrum. Someone can be living in a large body, a very large body, and still be malnourished. And this is because the body isn’t getting what it needs, so it then has to turn down certain functions, turn off certain functions – it has to start to break down tissues within the body for it to then be able to survive.

So I just want to clarify that this is what I mean by malnutrition. If you’re listening to this and you’re living with an eating disorder and your body doesn’t match up to some stereotype, know that, one, most people living with an eating disorder don’t have a body that matches up to some stereotype. Even people with anorexia, the vast majority of people don’t match up to some stereotype. But two, just because you’re living in a ‘normal’ body or even a ‘large’ body, you can still be in a malnourished state.

Coming back to oedema, malnutrition disrupts fluid balance. In this starved state, as I said, the body has to start to break down tissues, to break down protein stores of things like muscle and tissue, and this can have an impact on a substance in the blood called albumin. This means that the levels in the blood can start to drop down. And what albumin normally does is helps to keep the fluid inside the blood cells. So when it is low, the fluid then leaks out into the tissues, and this can lead to swelling.

The next reason is that refeeding helps to shift electrolytes. When someone begins eating again, especially carbohydrates, insulin will rise, and then insulin starts to pull in certain electrolytes – things like sodium and potassium and phosphate and magnesium – into the cells. This sudden shift disrupts the balance of the fluids inside the cells and outside of the cells, and it can then lead to a lot of fluid retention and swelling.

What electrolytes are doing is they’re normally both inside the cell and outside the cell, depending on which electrolyte we’re talking about, and they help to keep the balance right with the cells, help to move things inside and outside the cells. So when we start to bring in food again – often a lot more food again in the beginning, especially if carbohydrates have been low, this can really disrupt it and then lead to more of this oedema.

Stress hormones and the kidneys can also be part of it. So when you’re in this starved state, when you’re malnourished, it raises cortisol. Cortisol most people know as a ‘stress’ hormone, but one of cortisol’s roles is to find energy and bring it to the cells so that they can function properly. That’s really important in stress. If you’re about to have to run away from a lion, you want your body to be getting energy and finding energy to be able to bring to your muscle cells so that you can then deal with that stressor.

But the same thing happens whether you’re dealing with the stress of undereating, whether you’re dealing with the stress of getting an email from your boss that you don’t like – it’s all the same mechanism. So when we increase cortisol, one of its functions is trying to find energy for the body.

Also, when we have this increased cortisol, it tells the kidneys and other hormones to hold on to salt and hold on to water. Then in recovery, as these hormones then start to fluctuate, this can show up as temporary oedema.

Another one is to do with healing and inflammation. Eating food reactivates a lot of the repair processes within the body. That could be in the gut lining, in the tissues, in the organs. We’re basically turning the immune system on in a sense, and a lot of this then leads to temporary inflammation. Because with healing and with the immune system, inflammation is part and parcel of that process. When we have inflammation, this attracts fluid to these tissues, and again, we can get more of that swelling.

The final one that I’m going to mention – and I’m going to come back to this as we go through it – is there a thing called mast cell activation syndrome (MCAS). I’ve actually done a whole podcast on this with Dr Gaudiani, Dr G. I’ll put that in the show notes. We spend a good pretty much two hours just getting into this. MCAS is something that I see a lot more with eating disorders. Dr G is someone who I’ve learnt a lot about this from, so I highly recommend checking that out, especially if you are having lots of oedema as part of your recovery.

In that conversation and in the show notes for that episode, I link to some documents that Dr G uses as a screener to see, is it likely that someone has MCAS? You can find that in that episode.

With MCAS, it leads to histamine being released by the body, histamine in a lot higher amounts, and this can then lead to or contribute to water retention.

One of the other things that can also lead to oedema is to do with glycogen stores. I mentioned earlier about the carbohydrates component with this. When you eat carbohydrates, some of that is used instantly, and some of it is stored as a thing called glycogen. You store it in your muscles, you store it in your liver. What this is then used as is an energy source between meals. So when you run out of the energy that you’ve just eaten, your body, before it starts breaking down muscle and bone and tissues, liberates this glycogen and starts to use this as a short-term energy source.

But what happens when someone is undereating, especially when someone’s undereating carbohydrates, is the body doesn’t store the glycogen. So what then happens when you start to eat more food, especially more carbohydrates, is your body is using some of that food as energy, but it is also starting to store some of that as glycogen. And the way that the body stores glycogen is that it stores water with that glycogen.

It means if you’ve been in a place where you’re basically depleted of your glycogen stores and then you start to store it again, there’s a lot of water that comes in, and that can come in in quite a short amount of time. So again, this isn’t that your body has started to store more fat or that your body has started to store more muscle or anything along those lines – and those things can be happening as well, but the water retention is connected to this glycogen storage.

00:11:27

When might oedema be more pronounced?

In terms of when it can be more pronounced, obviously, as I talked about, it can be more pronounced when someone has MCAS. As I mentioned, this is connected typically to the release of histamine and other inflammatory mediators, and this can then lead to more swelling, more water retention, and sensitivity to these refeeding changes.

There can be more oedema when someone has been using laxatives or diuretics, if there’s been purging, if there’s been very severe restriction. And the reason for this, again, is because of all those things I went through before. There’s going to be more of a disruption to the fluid balance because of the protein stores, there’s going to be more of a shift in terms of the electrolytes when food comes in, etc. So if someone has been in a really depleted state, it’s more likely that they’re going to have that fluid retention or that oedema.

00:12:27

How long does oedema last?

Then how long does it last? The reality is this is highly individualised. For some people it can last days or weeks. I would say typically more than that. It’s probably rare for that to be only days and weeks. I would say on average we’re looking at a month or a couple of months through to much longer. I’ve had clients – and this is typically people who have MCAS – where it’s many, many months on, even a year, 18 months on into their recovery and they’re still having this occur. For most people, this usually resolves as the body reestablishes the balance. As I said, this can be a couple months, it could be more than that.

00:13:14

What can help with reducing oedema?

But if I’m thinking about what are the things that then can help with this, one is having real, consistent nourishment and rest. Yes, in the beginning these kinds of things can lead to the oedema, but as you continue to do this, this does lead to more stabilisation in the fluids and it shifts more quickly because you’re not then having situations where “I was eating a lot and then I’ve stopped eating a lot” and “We stored all this glycogen and now the glycogen has been completely depleted again.”

What you’re wanting is your glycogen gets restored and then you’re using a little bit each day as you need to, but you’re not completely depleting it. That means that the fluid balance is going to be staying about the same you’re not going to be in a situation where all of those fluids have been depleted because there’s no glycogen and then you’re holding on to a lot more fluid as the glycogen gets stored again.

I would say that I’ve noticed with clients that this can happen even from just a day of undereating. This is a lot more likely if someone also has MCAS, but it’s not necessarily to say that it’s the only time it can happen. I can remember a client where if she didn’t eat enough in the earlier part of the day when she had typically been doing it, by the afternoon when she did eat, she would get a lot more of the water retention that would happen.

So it’s not that you have to get into a really depleted state for the oedema to start to come back or to get worse; it can even happen if your day to day is not consistent and is getting skewed.

Other things that can help: really having compassion for yourself and understanding this is temporary, because the more that you can recognise this as a normal part of recovery, “this is okay, I need to have this compassion for myself”, the more likely that you’re going to be consistent, the more likely you are to keep doing the things that are going to be supportive as part of recovery.

You can be doing things like elevating your feet. You can do gentle stretching. You might want to do some walking. And I say ‘might’ here – it will depend. Depending on the client that I’m working with and depending on the stage that they’re at in recovery, depending on how much exercise has been a component of their recovery, will depend on what is the most appropriate thing here. But doing gentle stretching or elevating legs can then be helpful with this.

Wearing looser or more comfortable clothing can also be useful. I think this is useful from a psychological standpoint. What often can happen with the oedema is that you become very sensitive in those areas. You could be very sensitive around the belly where the oedema is going on, or you could be really sensitive around really any part of the body, and if you’re wearing things that are tight, it can be really accentuating that. So things that have a waistband but the waistband’s not particularly tight, it’s not digging in, it’s elastic but it’s a fairly loose elastic. From a psychological standpoint, I think this can be very helpful.

Resting, even when it feels counterintuitive to do so. I know there can be such a pull towards doing movement and it can be so difficult to sit still, but that is going to be really important for helping with the oedema.

Having ways of dealing with this emotionally. Doing some journalling or different techniques from acceptance and commitment therapy that then help to keep you in the moment, keep you in the present and deal with the uncomfortable thoughts and sensations and emotions that are arising. So having different tools that you deal with.

When I think about recovery, this is such a big part. I know it can often be simplified, “You just need to eat the food and do the rest and everything will take care of itself” and I just don’t believe that to be true for the vast majority of people in recovery – even everyone in recovery. So much of recovery is about, “How do I learn to cope without the eating disorder?” If this has been your go-to way of being able to cope for such a long amount of time, we need to be able to bring those tools in, especially in the early stages of recovery when there are things like oedema that are making things so psychologically and physically uncomfortable. So having tools to then help with that.

00:18:07

What not to do

In terms of what not to do, I wouldn’t be really completely cutting your fluids because dehydration can make oedema worse. It’s not typically being driven by the fact that you’re drinking too many fluids.

What I will say, though, is what I tend to notice isn’t that people are drinking too little fluids and they’ve been cutting their fluids; it’s that people are drinking a ton of fluids. This I don’t think is making the oedema worse per se; someone drinking 2 litres or 4 litres of water a day isn’t leading to the oedema. But what it is often leading to is, “I didn’t have my snack” or “I felt full at my meal. Basically, I’m not eating as much as I would be able to if I wasn’t having all of this fluid.”

So I don’t want someone not drinking enough, but I also think typically the problem is at the other end of the spectrum, that people are drinking way more than they need to, and this is having an impact on their capacity to bring more energy in and is being used as a way of staving off hunger.

Don’t restrict your salt. I think there can be this feeling of “If I’m getting these symptoms, I need to really restrict my salt” and that’s not a good solution. Normal salt intake can help to rebalance these fluids, so still continue to eat food that has salt in it or salt your food.

Don’t reduce your food intake, as I said. A lot of what is important in recovery is being able to eat enough, being able to eat consistently. The more you reduce your food intake as a way of “If I do this, maybe the swelling won’t be as bad or maybe the bloating won’t be as bad, or maybe it won’t be quite as uncomfortable”, whatever momentary relief this brings for you, it doesn’t really resolve the eating disorder, it doesn’t resolve the oedema. And even if it manages to reduce the oedema temporarily, once you then start eating what is required as part of recovery, it’s just going to come back again. So not reducing your food intake because of it.

Also not using compensatory behaviours to deal with it. As I mentioned a moment ago, yes, some kind of stretching or putting legs on the wall, or if appropriate, some gentle walking can be helpful. But this is very different to compulsive exercise. This is very different to going for really long walks that are about the eating disorder and about compensating for those uncomfortable feelings and sensations. As much as there can be a pull towards that, it doesn’t actually help.

00:21:05

A note on mast cell activation syndrome (MCAS)

In terms of MCAS, as I said, there’s a whole podcast on it, so I highly recommend that you check that out. But if this is going on, I really do recommend working with either a medical team or people who really understand this so they can address things like the histamine sensitivity or the inflammation while you continue recovery. I’ve got a couple of clients that I’m working with at the moment where this is the case for them, and they’ve had to use different medications as part of this to be able to deal with the MCAS component while going through recovery.

If this is what is going on for you, then trying to DIY your recovery by listening to podcasts and watching YouTube videos and whatever – it’s not that I’m against you consuming that content, but that in and of itself and you trying to do recovery on your own is probably not the best idea.

I will also say, I’m not a doctor. I don’t prescribe medications. But it is also worth noting that for some people, having medical intervention with this can then help, and this can be even outside of MCAS. Sometimes doctors will recommend antihistamines. Obviously that’s for MCAS, but it can also be in someone who’s not dealing with that. Sometimes they will recommend diuretics to help manage the oedema.

So really, if this is something that is going on that you think is going on too long or feels too extreme, I do recommend getting it investigated and seeing if there’s anything that can be supporting you.

I do understand that this is difficult for many reasons. It can be difficult because a lot of doctors don’t really understand eating disorders, so they can make some pretty stupid comments or tell you “That seems like a lot of food. Do you really think you need to be doing that?” or “What? You’re not exercising? You should be exercising?” So I understand that you can receive some pretty dumb comments from people who should really know better.

I also understand that if someone is living in a body that doesn’t match up to that doctor’s stereotype of what an eating disorder looks like, there can also be receiving comments that are really unhelpful. So when I say finding yourself a medical team or a doctor, I understand that there are constraints with this, for a number of different reasons.

And I also know that there is some seriousness to this. I don’t think I’ve done a podcast before on refeeding syndrome; that could be one for a future episode. But refeeding syndrome is a real thing, it’s a serious thing, it’s a life-threatening thing. So I’m not against people getting medical support in recovery. I think it can be very important and life-saving.

00:24:04

When to seek medical support

So when is it important to seek medical support? I think if you are having severe or persistent oedema, so if this is going on for weeks where it feels like “This is a lot, it’s not right” or if it’s been going on for many, many months and it’s at that kind of level where it doesn’t feel like I’m noticing improvements.

What will often happen with people is they will have oedema show up in different places at different points. So “Initially it started in my feet or my ankles, and then after that, that started to lessen and then it was in my upper legs, and then that started to lessen and I was getting a lot more in my belly.” So there are these points where the oedema in certain areas is very bad or uncomfortable or whatever it is, and then that reaches a peak and starts to come down the other side and starts to resolve.

If you’re in a situation where that’s not occurring, then yes, it needs to be investigated or it could be useful to get it investigated. And it’s really hard for me to give real specifics on a podcast because with clients, there’s so many different questions that I’m asking about what’s going on in terms of that. Like, what could be the root of this?

There’s one thing when oedema’s going on when someone is resting and consistently eating and doing all the things that they should be in recovery versus oedema is going on and “Yeah, I was eating well for a day or two and then I wasn’t doing so well and then I started overexercising again.” Okay, it makes sense that this has continued to hang around for a longer amount of time because we’re not being consistent with doing the things that will help that to actually resolve.

Another one is if you’re getting pain or shortness of breath or especially chest pain. If there’s a very rapid onset or very extreme swelling. And again, what one person thinks of as extreme could be different to what someone else thinks of as extreme, but if it doesn’t feel like this is what should be going on, then seek medical attention. Go and ask someone. It might turn out that that is very normal and it might turn out that “Hey, we need to do some more investigation about this.”

Look, in a lot of ways oedema is common and usually harmless in recovery, but checking with a doctor really does provide reassurance and safety.

00:26:39

Oedema is a marker of progress

The final thing I just want to say as part of this – oedema is mostly a marker of progress, not value. There are times when we need to do things to stem it, whether that be antihistamines or to do with diuretics or whatever, but the vast majority of times, this is just part and parcel of what happens in recovery. It’s what happens when the body goes from being in a depleted or malnourished state to bringing in more energy and the body starting to do that repair work.

I know that is very uncomfortable and that it’s very unpleasant, and if we could choose what order the body would heal and how it would do that healing, we wouldn’t be bringing oedema into that process. But unfortunately, it is how the body heals and it is part and parcel of it. So when it is showing up, doing the things that I talked about earlier in terms of the consistent eating, in terms of having coping practices, connecting with your values, really remembering why you’re doing recovery.

So that is it for this episode. I often get to the end of these things and put it out and then realise there was this thing and this thing and this thing that I didn’t touch on, but hopefully what I have shared has been helpful.

As I mentioned at the top, I’m currently taking on new clients. If you want to fully recover, I would love to help. You can send an email to info@seven-health.com and just put ‘coaching’ in the subject line and I can get the details over to you.

So that is it for this week’s episode. I will be back with another episode next week. Until then, take care, and I’ll see you soon!

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