Episode 20: Why Can’t I Lose Weight? Ask the Coach

Why Can’t I Lose Weight? Ask the Coach

aka Dear Tami 2.0

  • As fibromyalgia patients, our bodies are often stuck in “fight or flight” mode. The pain and fatigue we experience can make weight loss extra challenging.
  • Many fibromyalgia patients also have thyroid and adrenal issues which dramatically affects our efforts to lose weight.
  • The fundamentals of diet and exercise are only part of the equation.
  • Cravings are not necessarily your fault. Cravings can be a very natural way that your body says, “Help! I am starving for nutrients!”
  • Just two nights of bad sleep can affect the hormones that regulate your appetite.
  • Studies show that “diets” do not work. Fortunately, there are plenty of things that can work to help you lose weight with fibromyalgia. 

How do you lose weight when you have fibromyalgia? Before we can answer that question, we have to back up a step. Tami suggests that a lot of people start with the wrong question. They start with the question of, How do I lose weight? because that’s what we care about. That’s what we’re worried about. But if we don’t understand why we gained weight in the first place, then we might not be doing the right things to get the outcome that we want.

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You are listening to the Fibromyalgia Podcast with Tami Stackelhouse, Episode 20. 

Welcome to the Fibromyalgia Podcast! 

I’m your Coach, Tami Stackelhouse, and today’s episode is going to be our second Ask the Coach episode. This is also our “Dear Tami” episode, where I answer questions sent in by you, the listeners. Today we’re going to be talking about weight gain and weight loss with fibromyalgia, and I’ll read that question in just a minute.

[01:12] Before we get to that though, I do want to read a little note that I received after Episode 16, which was our episode on Fibromyalgia in Children with Dr. Melissa Congdon. She says, “Oh my gosh, Tami! I have been in tears through Episode 16. So many questions now have answers. At least in my mind, I am positive my middle girl had fibromyalgia starting at age three. Oh I wish we had heard of your podcast back then, but it was 1978! We didn’t even know about the Internet yet. I’m praying she finds a doctor that will diagnose her properly, but at this late date, there are so many other issues at hand.”

[02:05] I just wanted to share that because if you haven’t listened to Episode 16, I highly encourage that you do it. I believe that it’s actually our most powerful episode to date. I really hope that you’ll go take a listen to that. It answered a lot of questions for me, as well, from my childhood and growing up in a body that didn’t quite work like everybody else’s.

[02:30] I also want to give a little disclaimer here… actually two disclaimers. First off, I just want to remind everyone the things that you hear in this podcast — I’m a coach. I’m not a doctor. I don’t even know you and your situation. Most of you I haven’t talked to, so please don’t consider this as medical advice. It’s definitely not meant to replace you talking with your doctor. Take it as information and education.

[03:02] The second little disclaimer I want to give you as kind of a funny one, and that’s the fact that the Blue Angels are flying overhead. They’re doing a show for the next half hour, so you might hear them buzzing around my house as I record this episode. If you hear military jets in the background, that is what’s going on there. I just wanted to say that in case you guys heard it, okay?

[03:26] Let me read the email that I received for today’s Ask the Coach. She said, “Hi! Your podcast is changing my life. Thank you so much. My question is: How do you lose weight when you have fibromyalgia? Do you recommend a program or have any tips? My doctor recommended a nutritionist…” And then she also mentioned some particular programs, which we’re not going to mention by name here, just for liability sake.

The question is: How do you lose weight when you have fibromyalgia?

[04:04] I’m actually going to back up a step and talk about why it is that we gained weight in the first place, because I think a lot of people start with the wrong question. They start with the question of “How do I lose weight?” because let’s be honest, that’s what we care about. That’s what we’re worried about. But if we don’t understand why we gained the weight in the first place, then we might not be doing the right thing to get the outcome that we want.

I think it’s really important, especially with fibromyalgia, to understand this. There are a lot of things going on in our bodies that make it so easy for us to gain weight and so hard for us to lose weight, and I really want to go over that.

[04:48] I also want to make it super clear that these things that are happening in your body, they’re not your fault. They are just part of the illness of fibromyalgia. If there are people in your lives — if you hear those negative voices in your head about why you may have gained weight, I want you to know it’s not your fault, and this is very, very normal with fibromyalgia. That doesn’t mean we don’t want to change it, of course, but I want you to understand that it’s not your fault and that it is very, very normal.

Nearly three quarters (3/4) of all fibromyalgia patients are clinically overweight or obese. Now, those are medical terms. I want to define those for you so you get the idea here. Clinically overweight means 5 to about 30 pounds over what is considered your ideal weight. Clinically obese is more than 30 pounds overweight. Three quarters of all fibromyalgia patients fall into this category.

[06:01] Now, there are a bunch of surveys that have been done asking fibromyalgia patients lots of different things. Like, Are you able to work?, How old are you?, those kind of questions. One of the questions was looking at weight. This particular survey, which was done at Oregon Health and Science University, did an Internet survey of about 2,500 fibro patients. This was quite a few years ago. They found that on average the people who answered the survey were around 32 pounds overweight and they had gained about 50 pounds since high school.

[06:45] In my own life, I can tell you that when I was diagnosed with fibromyalgia, one of the things that happened was that I had gained a bunch of weight. Some of the medications that I had taken had a side effect of weight gain. One of the medications… Oh, my gosh, you guys! One of the medications that I took to try to manage my migraines, I literally gained four pounds a week with that medication. You can’t safely lose weight enough to keep up with that.

So, you know, again, that’s totally not your fault. When these medications cause a side effect of weight gain, it’s not because you’re lazy or because you’re a glutton, or anything like that. This is something biologically happening in your body. Let’s talk about some of those things that are happening.

[07:44] One, obviously, is our diet. When you have fibromyalgia, we don’t have the energy to go grocery shopping. We often don’t have the energy to cook. It’s much easier to just use prepackaged food, takeout, fast food, or frozen foods. We just don’t have a lot of energy, so we do shortcuts where we can, and it’s just so much easier to pick something up on the way home than it is to cook something at home.

Often, we are getting foods that probably aren’t the best for us, right? So, that is part of it. We tend to look toward comfort foods which tend to be higher in fat, sugar, and higher in carbs. So, yes, our diet is absolutely a part of it.

And, yes, your doctors are right, exercise is also part of why we’ve gained weight. And if you look back over…

 Oh! By the way, you guys, yes, I’m starting with the obvious things, and we’re going to get to other things in just a minute. I’m just getting these out of the way because these are the ones your doctors are talking about. So, yes, this is part of the picture.

[09:00] Exercise with fibromyalgia — I’m just using the term “exercise.” I’m just talking about how much your body moves. As you develop fibromyalgia, as you have more pain, as you have more fatigue, as you have worse sleep and you’re exhausted, then yes, our activity level decreases. Quite often we are starting to consume more calories, and we are also expending fewer calories, so that math adds up to weight gain.

Like I mentioned already, a lot of our medications have a side effect of weight gain. I have had many clients who have gained a lot of weight on Lyrica and Savella. I don’t see it as much with Cymbalta, but it does [happen]. Most of the time that I’ve had clients come off of Lyrica and Savella, it’s because they’ve gained so much weight. And, like I said, the one medication I used to try and manage my migraines, I gained four pounds a week. So, there’s a lot of that going on.

[10:06] Pain also is a factor in that. That’s where we do things like self-medicating. I don’t necessarily mean self-medicating with drugs or alcohol, although that can sometimes be part of it. It also means self-medicating with things like food — maybe chocolate, maybe ice cream, all of that kind of stuff. Another thing that happens with pain is that it increases our cortisol as a response to our body being continually under the stress of having pain. We’re going to talk about that a little bit more in a minute, about why cortisol is a factor there.

[10:47] With fibromyalgia, we often have undiagnosed food allergies or poor digestion, which means our bodies aren’t processing the food that we eat. We’re actually starving for nutrients, which can often lead to cravings.

I’ll give you an interesting example: If you have ever craved ice cream in the evening — or a bowl of cereal and milk in the evening — what may be happening there is your brain may be starving for serotonin. Here’s what happens in the body: In the evening when it starts getting darker, your body switches from [producing] serotonin over to producing melatonin, which of course is how you start getting sleepy and fall asleep at night. Your body then starts making melatonin and uses the same pathway that makes your serotonin. That means your level of serotonin goes down as you start switching the assembly line, so to speak, over to making melatonin. Your brain says, “Help, I need more serotonin.”

[11:59] Well, serotonin is one of those neurotransmitters that can be hard to get from the food that you eat. When the tryptophans and other amino acids that you get from protein and things like that — everything else tends to absorb before you get the building blocks that you need for your brain to make serotonin. Also, your gut makes a lot of your serotonin, and we have poor digestion, right? So, we’ve got extra trouble here.

[12:30] When you have a high sugar meal that also has some protein in it — ice cream and cereal with milk, especially sugary cereal with milk — that sugar changes the process in your body so that more of the building blocks get absorbed for your brain to make serotonin. Things like craving ice cream, sugary cereal and milk in the evening, lets the ingredients in that you need to make serotonin. So, those cravings again aren’t necessarily your fault. It’s your body saying, “Hey, I need serotonin. HELP me!”

[13:16] Sometimes, we will have cravings because our blood sugar isn’t stable. When our blood sugar isn’t stable, our pain is also unstable.

[13:28] Another thing that happens with fibromyalgia is we have mitochondrial dysfunction. Your mitochondria are the little power cells in each of the cells of your body. They’re like the little batteries that live within your body. Those don’t work quite right in fibromyalgia. Sometimes, our mitochondrial dysfunction is so bad that we might not even have enough energy to convert the food we eat into fuel for our bodies to use. Sometimes, that food that we eat just gets stored as fat instead of turned into energy. So, if you’re gaining weight but you’re still exhausted, this could be part of what’s happening here.

Now, I want to talk about cortisol. I mentioned it earlier. This is a stress hormone produced by your adrenals. There are good things about it and there are bad things about it. Your cortisol level is part of what helps you wake up in the morning, and your falling cortisol at night is part of what allows you to fall asleep. That’s a whole other podcast episode, to talk about your adrenals and your cortisol levels.

But for now, what I want you to know is that our bodies don’t really know the difference between good stress and bad stress. Stress is stress, right? If you’ve ever gotten married or moved into a brand new house, you know that even good things are stressful, right? That same thing happens in our body. When we’re stressed, we produce more cortisol.

[15:04] Our cortisol… One of the things it does is to tell our bodies that we need to eat more sugary carbs. We need fast, quick burning fuel so that we can “fight or flight”, right? That’s the fight or flight response. We need those quick burning fuels so that we have energy to fight off that tiger or run away from the tiger. The other thing that cortisol tells our bodies to do is, it tells the body what fuel to burn and whether or not to store food as fat.

Typically, if you have a lot of cortisol running through your system, you’ll notice weight gain around the middle of your body. That’s one of the typical places to see cortisol weight gain. And this is also why worrying about gaining weight is actually going to cause you to gain even more weight. If you are stressing out over your weight, over that number on the scale, it’s going to make it even harder to lose weight because your body is in the mode of:  #1 — craving sugar and carbs, and #2 — storing food as fat. It’s a double whammy problem there for us.

[16:24] You’ve got to make sure that you control your stress. There are lots of things you can do for that. Again, that’s a whole other podcast episode. I want you to understand that as fibromyalgia patients, our bodies are often stuck in fight or flight. We often have cortisol issues — too much cortisol, not enough cortisol, cortisol at the wrong time — there are a lot of things going on there. This absolutely can affect the weight that we gain and the way that our bodies crave fuel and burn fuel.

Another massive thing with fibromyalgia is sleep. So get this. There was a study done at The University of Chicago that looked at the hormone levels that were affected after just two nights of bad sleep. Now, anybody listening to this podcast, I know you have had more than two nights of bad sleep, right? So, that means take whatever you’re seeing here and multiply it times a thousand, right? After just two nights of poor sleep, the people in the study specifically craved high sugar, high salt, starchy food. So, things like fries and a milkshake, right?

[17:46] The hormones that were affected were the hormones that suppress your appetite, the things that keep you from being hungry or feeling satisfied. The other hormone triggers hunger and they went the wrong direction. The one that suppresses appetite didn’t have enough of it, which meant your appetite wasn’t suppressed, and the hormone that triggers hunger, there was too much of it, so you were even hungrier. You see how it’s like the teeter totter going the wrong way.

[18:24] Interestingly, these two hormones, leptin — which suppresses your appetite, and ghrelin — which triggers hunger… There was a 2013 study done at Stanford, which was really, really interesting. It looked at the correlation between leptin and fatigue in chronic fatigue patients. There’s a lot more going on here than just weight gain. Like I said, a lot is going on.

[18:57] I found this study, done in France, super interesting. They took a group of 20-year-old men. They had two groups. One group had four hours of sleep, the other group had eight hours of sleep. They watched what they ate during the day. They gave them breakfast. They gave them lunch. They let them have a buffet for dinner so that they could see how and what people ate differently.

Those who had four hours of sleep craved about 550 calories more per day, which would add up to about a one pound gained per week of weight.

[19:39] Now we [fibro patients] have got terrible sleep. If you think about this French study of not getting enough sleep, gaining about a pound a week, and then you factor in how long you’ve had fibromyalgia, for me it’s been twelve years — 12 years times 52 weeks… I don’t want to do that math! So, sleep is a huge, huge part of this.

[20:07] If you still have bad sleep, then it’s going to make it super, super difficult for you to lose weight, even if you eat everything perfectly, because the hormones in your body that are changing what you crave are going to be off. It’s going to make it a lot harder for you to make good choices. It’s also changing how your body processes the food that you eat. So, sleep is really huge.

[20:37] Your thyroid is also a big, big part of this. If your thyroid is running low — if you’re hypothyroid — one of the main symptoms is that of weight gain. Again, almost every fibromyalgia patient I’ve ever worked with has had thyroid and adrenal issues. Not all of them, but almost all of them. So, this is a factor as well, which, of course, just means that these are all things that you’ll want to address with your doctor and make sure that these things are all functioning properly in order to make the efforts that you use to lose weight, more effective. Right?

To give you a short, quick, you know… What do we do then?

#1. You want to make sure you’re talking with your doctor. You want to make sure that your thyroid is functioning properly, that your adrenals are functioning properly, that your neurotransmitters, your dopamine, your serotonin and norepinephrine, are all where they should be.

#2. You want to make sure that you are living in a way that is reducing your stress to reduce those cortisol levels, and that you’re also living in a way that helps your mitochondria work as well as possible.

[22:02] Ultimately, the answer to our reader’s — or should I say our listener’s — question of, “How do I lose weight with fibromyalgia?” The answer is very, very individualized. I have seen people lose weight just by having peer support — having a buddy that they work with or a coach that’s keeping them accountable. I’ve seen people lose weight with things like keto diets or paleo diets or even just counting calories.

[22:35] I have seen so many different things work, but in the long run, all the studies show that “diets” do not work. There was a UCLA study from back in 2007 where they followed people for over two years, and 83% of those gained back more weight than they lost over those two years.

[23:06] What I would encourage you to do is focus, instead, not on the losing weight, but on having your body be healthy. Focus on having good thyroid function. Focus on giving your body the nutrients that it needs to be healthy. The number on the scale and the size that you wear is much, much less important than how healthy you are. Whether or not you have the energy to live the life you want to live, whether or not you have pain every day, those are the things that are important.

Yes, there are some dietary things and exercise things that can help make those things better, that can help make that better for you. For instance, we know with fibromyalgia, having sugar in your diet is one of the things that can cause additional pain.

We know that an anti-inflammatory diet can help. And as far as… This is so funny because this just came up today. I was in a store and heard two women talking and one of the ladies was talking about how she had just had a blood test done to figure out what her food allergies were and she was allergic to things like kale. So, just because it’s healthy doesn’t mean it’s good for YOU. An anti-inflammatory diet is going to have space in there to be customizable for you.

Now, there are some things that we know are not good for anybody. MSG is one. Artificial sweeteners is one. Sugar is another. There are other things that are bad for some people but not everybody. Like this woman who is, you know, allergic to kale. The woman she was talking to said that she, if she ate lima beans, she would go into anaphylactic shock. Things that you think are potentially healthy might not actually be healthy for you.

[25:21] We want to listen to your body. We want to make sure that you keep your body happy and pay attention. You know, there are things out there that can help you find answers faster, but really just pay attention to how you feel.

There was one client that I worked with that I had her keep a food diary for a few months. We discovered that every time she ate tomatoes, two days later, her pain levels would be higher. That is not something that you would be able to figure out on your own without tracking your food and looking for those patterns. Because two days? Oh, my gosh, can you even remember what you ate two days ago? So, doing things like keeping a food diary or doing an ELISA test to see what your food allergies are, those kinds of things can be very helpful.

[26:17] Again, there are some things we know for sure that are going to cause inflammation and pain in fibromyalgia patients. We know sugar. We know MSG, and we know artificial sweeteners. I highly recommend Dr Liptan’s book, The Fibro Food Formula (affiliate link). We will definitely link to that in the show notes for today’s episode. And, of course, I’ll link to all of the studies that I mentioned in this episode for you. You can take a look at that.

In terms of things like exercise and moving more, that’s a whole other podcast episode. We are already at our time for this episode, so I won’t go into that, but just know that there are right and wrong ways to exercise with fibromyalgia, and most people are not being taught how to properly exercise with fibromyalgia. So, yes, there are ways you can do that. And, yes, it is different than what a healthy person or a normal person would do. So, keep that in mind.

[27:26] All right, so with that, I’m going to wrap it up here today. I hope that answers your question a little bit. I know it does and it doesn’t at the same time. Do make sure that you’re talking with your doctor, that you’re researching all of those things that could be contributing to your body not functioning properly and that are making you gain weight or making it hard for you to lose weight. Address that first.

You also want to start addressing your self-care, your self-talk, your stress management. Again, to help manage those things that are happening biologically, that are making it harder for you to lose weight and making it super easy to gain weight. We want to work on your sleep. All of that kind of stuff.

And then, yes, of course, we want to also make sure that you are eating good foods that are giving your body the nutrients that it needs and that you’re moving enough, which actually comes a little bit farther down the road. We want to get you with a little bit more energy before we start spending it on exercise. If you can’t get through the day with the energy you have, then we have no business spending energy on things like aerobic exercise or weight lifting or whatever your thing might be. Sometimes, we actually have to cut back a little bit.

[28:53] If you ever have any questions, you guys know you are always welcome to schedule a complimentary consultation with one of my coaches. We would love to help you with some of this. I know it is so overwhelming and there’s so much both good and bad information out there.

[29:14] There are several books that I’m going to link to in today’s show notes. One is the book I just mentioned, The Fibro Food Formula by Dr. Liptan (affiliate link). We’ll have that out there.

[29:27] Another couple of books that I think are really helpful, The Mood Cure and The Diet Cure, both are by Julia Ross (affiliate links). It’s all about your neurotransmitters, amino acids, and how the food we eat helps with our mood and with our energy, and so many other things. The Diet Cure has the twist of how being on diets actually makes this problem worse. It helps you understand why your body is craving certain things. This is where I got the information about the ice cream and the cereal at night before bed, It came straight out of her books. So those are two great books.

[30:09] There’s also a really great book by Gary Taubes called Why Do We Get Fat? (affiliate link) I will link to that, as well. Super eye opening in the science but a little bit more technical. Still, a great book to read, as well.

[30:25] All right, you guys, that is it for today’s episode. Thanks for being with me for another “Ask The Coach”. I hope you guys will go out and submit more questions because I love getting your questions. It helps me know what is interesting to you guys, and a lot of times that not only gives me content for our every tenth “Ask The Coach” episode, but also it gives me ideas on what you’re interested in for the other podcast episodes.

[30:57] That’s why we did the episode with Dr. Lipton on CBDs. I had received four or five different people emailing to Ask the Coach about CBD. So, please be sure and send those in, and don’t worry, we will get you an answer when you email us, even though it might be a couple of months before we get to our next Ask The Coach episode.

[31:19] We are in the process of getting the next ten episodes together. We do these in ten-episode blocks, and we’re putting together our episodes for the next few months right now. So, if there’s anything in particular you would like to hear about, by all means, let us know over the next couple of months.

[31:40] I hope to do a bunch of super fun things, like having some of our researchers on the podcast to talk to you about the latest fibromyalgia research. We still have our interview with Dr. Jarred Younger coming up. I am also going to be doing a special podcast, hopefully, if this all works, with some of my coaches at our alumni retreat that is coming up soon.

So, stay tuned. We’ve got all kinds of fun stuff and we’ll see you guys back here in a couple of weeks. Bye!

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