Extreme hunger during parts of a crash/relapse

[Plum]

I'm curious if anyone else experiences this or has an explanation of why this happens:

Some of my crashes cause me to be very hungry for days at a time. This can happen at any point in the crash, is NOT linked to severity of symptoms and does not happen with every crash/relapse.
What I experience when I have a crash/relapse is several weeks of worsening symptoms, usually lasting 6-8 weeks and not always returning to the level of activity I had prior to the crash/relapse.

I eat pretty much the same meals on rotation and so I know what I usually consume. When going through these periods it seems to come out of nowhere. I'll be nicely full after a meal and then a few hours later (earlier than normal), I am starving and my symptoms are WAY worse. This is not related to blood sugar as I'm on a low carb diet and test regularly. I usually just get hungry between meals and if I want to wait til my next meal, there is no worsening of symptoms. But right now I feel like I'll do anything for something to eat and it drives me a bit nuts especially as I don't have the energy to keep getting meals!

Any ideas what's going on?

 

[Seven7]

I had the same issue ( in a really bad way) I need about double to triple calories during crash, it is as if my body is only able to produce calories of new food and unable from stored fat. I gained about 50pounds giving in ( becuase it lessens the crash).
So I looked for a new way. I am trying low carb w high fat ( the high fat is the important part) and the extreme constant hunger has gone away. I definitely do not process carbs well.

I don’t know if it is the mct oil itself or being close to keto ( I avoid full keto becuase I get the keto rash) but that has eliminated the crazy hunger ( sorry if this is too much info but my other appetites increases too) so I know is a hormonal all over the place thing.

My husband makes fun of me becuase I can nearly move and I start winking at him and asking for chocolate

 

[snowman]

I get periods of extreme appetite from time to time like that, but I distinguish between hunger and appetite - feeling hunger in the stomach grumbling feeling empty sense and feeling a huge appetite as in craving food and huge appetite even after big meals while still full. If it's hunger, I'm usually satisfied by food. If it's abnormal appetite, I think of several possibilities and try things that may help them. 1. critters or flora imbalance in GI system releasing some chemicals to increase appetite, tried things like iodine, ginger, turmeric, probiotics, avoiding sugar including fruit for several days. 2. nutrient insufficiencies possibly lowering dopamine, tried high dose B1 or iron or magnesium chloride or zinc or turmeric. If on really high dose zinc for a couple of months, it might increase appetite whereas initially it may decrease appetite. 3. thyroid hormones possibly off, tested and adjusted that. 4. not absorbing some nutrients well thus craving variety of foods, checked pancreatic and bile issues and supplemented accordingly. 5. some sort of weird hypothalamus thing or metabolic thing going on, no idea. tried miscellaneous things that can reduce appetite or aid in brain energy such as high dose B1, high dose biotin, theanine, bit of caffeine. 6. orthostatic intolerance may affect appetite/cravings, don't ask me why, maybe not enough circulation getting to places in brain that regulate ghrelin and other appetite hormones. Tried seeing if laying flat 1/2 hour reduces appetite and sitting up for a bit increases it. 7. If take too many methyl supplements I get huge appetite, tried cutting those and adding niacinamide. No other ideas at the moment.

 

[ChrisD]

Whether on a standard diet, Paleo or Keto, as long as I have had ME/CFS, I have always needed to consume almost double or triple the calories after exertion or when in a crash, I rarely struggle with appetite. Not ideal when you are not able to work to bring in income to afford 2-3x the food you would usually eat!

 

[Plum]

Whether on a standard diet, Paleo or Keto, as long as I have had ME/CFS, I have always needed to consume almost double or triple the calories after exertion or when in a crash, I rarely struggle with appetite. Not ideal when you are not able to work to bring in income to afford 2-3x the food you would usually eat!

Do you find eating that much has any benefit on symptoms or duration of crash?

@snowman some very interesting points raised - thank you. I keep meaning to get tested for certain deficiencies and the orthostatic intolerance is something I will look out for.

 

[JinZ]

Vegan, same issue. Prior to crash start to eat crazy amount of oreos

 

[ChrisD]

Do you find eating that much has any benefit on symptoms or duration of crash?

@Plum Yes I find that amount will help me recover to my 'illness baseline' and it will shorten the crash compared to if I don't satisfy that hunger.

@JinZ Are you an ethical vegan or for health reasons? because in my personal opinion it's really going to hinder recovery from ME/CFS and especially Oreos which will spike your blood sugar hard disrupt hormones etc. I know you won't want to hear it but I mean it for the best
- People with ME generally do better on a Paleo Ketogenic diet than plant based which is lacking a lot of nutrients, however some people do seem to thrive on high carb and medical medium etc. too.

 

[leokitten]

Wow, yes I get extreme hunger too and my food taste completely changes. I get an intense need to eat calories and carbs as well. Same symptoms as all of you. For me it’s during the beginning and middle of crash.

This is also one of my PEM symptoms that creeps up slowly telling me that I’m overexerting and heading for a crash. The reverse is a symptom that my crash is starting to go away because like a light switch I suddenl don’t feel it anymore and my hunger and tastes return to baseline.

 

[Seven7]

Update= in keto diet I am not seeing the same ( extreme hungry when crashed) so must be something to the glucose metabolism and ya.

 

[leokitten]

Update= in keto diet I am not seeing the same ( extreme hungry when crashed) so must be something to the glucose metabolism and ya.

For me the keto diet didn’t have an effect on that symptom, though maybe this is due to my pushing and higher activity levels leading to constant crashes. I haven’t had any time during my six years with ME where I wasn’t in a push-crash cycle, so I have to see how not doing that changes things.

 

[Seven7]

@leokitten oh I can relate! I have had the crazy idea to try to hold a job, raise a kid and all the rest!!!! But to be honest I do Crash / good cycle no matter if I do nothing at all or not.
Why I say I have remitting relapsing type.

 

[Wolfcub]

Odd, but way in the past when I was basically fit and well, but came down with a flu/cold bug, I would get a "deranged appetite" at some point during the first few days of the bug, and be unnaturally ravenous. So hungry I would eat anything but usually craving protein foods.

Now in the beginning of this illness I got the same thing sometimes. A weird ravenous hunger. Craving protein again each time. Usually eggs or sardines. Chickpeas, lentils. Sometimes cheese. Even in the middle of the night.
I have definitely increased my food intake on average over the last 8 months. Yet gained no weight. I now need "supper" as well as "dinner" in the evening.

I felt this was more than just sheer exhaustion which will often crave extra calories to try desperately to restore energy. It felt like there was something else to it....
After starting a vitamin D3 supplement the sardine and cheese cravings died off somewhat.

I still get bouts of that, usually when I relapse. Or just before.

 

[DoggerFisher]

If I do have anything with sugar or sweet even a carrot it will set off that kind of scenario, dissatisfaction I would say rather than hunger if I leave most carbs alone my energy, though limited, is a whole heap steadier. I go for cheese.

 

[Judee]

I think sometimes our bodies are trying to heal and the added hunger is its attempt to fuel that.

 

[Stretched]

Yes, I eat more when stressed as in pre crash or in a crash like stage. My feelings are one of anxiety and my gut gets jittery with raw feelings especially when sleep is
too short. I tend to eat more in order to calm and sooth my then tentative stomach. For example, rather than eating one egg MacMuffin I eat two. It helps!

 

[Wolfcub]

Yes, I eat more when stressed as in pre crash or in a crash like stage. My feelings are one of anxiety and my gut gets jittery with raw feelings especially when sleep is
too short. I tend to eat more in order to calm and sooth my then tentative stomach. For example, rather than eating one egg MacMuffin I eat two. It helps!

Yes I think lack of sleep does make you more hungry. The body's desperate attempt to get energy from somewhere.
I am less likely to be hungry when super-stressed over anything or upset. Upset....I can't eat much. But stress does drain a lot of energy, so eating more makes sense technically. Maybe I am more hungry when the stress actually dies down? I never noticed that, but it's likely.

But when I actually "crash" usually my appetite is worse. I can sometimes feel slightly queasy in a crash, which doesn't help