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Losing weight and not trying.

BEG

Senior Member
Messages
1,032
Location
Southeast US
Is this some kind of dream come true or the beginning of a bad downward spiral? At times, I don't have the energy for digestion. That means I don't get hungry because the last meal is still with me. After a meal, I'm totally grounded. I'm not eating large meals either, but trying to eat small meals to preserve energy. I didn't know that eating would begin to take such a large portion of my energy bank.

Anyone else with this problem? I would add, also, that this is significantly different from the person I used to be -- loved to eat.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Is this some kind of dream come true or the beginning of a bad downward spiral? At times, I don't have the energy for digestion. That means I don't get hungry because the last meal is still with me. After a meal, I'm totally grounded. I'm not eating large meals either, but trying to eat small meals to preserve energy. I didn't know that eating would begin to take such a large portion of my energy bank.

Anyone else with this problem? I would add, also, that this is significantly different from the person I used to be -- loved to eat.

In the first two years, I lost about 20 pounds without trying. My normal weight is around 115.
I could not eat that much. The nausea was too bad.
Now, the episodes are not as long and it's easy to gain back the weight.

My digestion is pretty bad too. I need to eat often (small meals) in order to control the nausea.
 

kat0465

Senior Member
Messages
230
Location
Texas
Been there did that.
Its gotta be something messing with our digestion, not to be gross, but I could eat a meal and hours later get so nauseated I would vomit, and the food wouldn't even be digested ;(

I lost about 45 lbs, and got down to about 108. It was scary, and no dr could tell me why I was so extremely nauseated. After almost 10 years the nausea suddenly left. Not it hits from time to time. But nothing like before.

Small, easy to digest food will help a bit. Maybe try some enzymes for digestion. Sometimes we have to do all the work ourselves, drs for the most part don't care if your nauseated, throwing up, loosing weight. As long as the blood work is clear. At least that's my experience.

At the time I went thru it, I was young and figured if the dr couldn't do anything I would just live with it.... Now I know there's so much more to our disease, it effects every part of our body.

Crystalized Ginger helped my nausea some too. Hopefully this to will pass soon, I loved to eat too!

Kat
 
Messages
13,774
Yeah - I'm with Kat on the ginger.

I find that I need to eat a lot, am still really skinny, and get a lot worse if I go too long without food. Others are really surprised at how much I eat. If I do have to delay eating, or eat less than normal, I really feel my symptoms worsening. I find nuts to be a helpful snack to have lying around... but I find it important to make sure I eat main meals, rather than just constant snacking.

I can feel tired out by eating too... but think this is much better than the alternative of getting gradually more tired because of not eating quite enough.

Good luck with it.
 

BEG

Senior Member
Messages
1,032
Location
Southeast US
Thank you all for your replies. When I first got sick, I lost a lot of weight, too, but then I really balooned up thanks to becoming so sedentary. So this inablility to eat, not wanting to eat because of no appetite, and the energy drain has come out of the blue. I think because I was heavy, my doctor has blown off this weight loss. I will try your very good suggestions.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
Brown eyed girl.

I went thru a weight loss when my blood pressure dropped too far. I went from 195 to 175, and was still dropping. My weight came back when I started on Midodrine to boost my blood pressure. I watched my father shrink away to almost nothing form CFS, so I tried hard to keep my weight up. It just didn't work until I got my BP back on track.

John
 

BEG

Senior Member
Messages
1,032
Location
Southeast US
Interesting, John. If my BP is taken in the dr.'s office it is usually 110/68. If I take it at home after light standing/walking type activity, it will be lower. What is your BP, if I may ask? Also -- I have POTS.
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK
Are you taking any b12? Lack of appetite is a symptom of b12 deficiency. When my old dog lost her appetite the vet gave her a b12 injection and the very next day her appetite went through the roof.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
When I went thru my weight loss problems, my BP had dropped to 80/50 and my pulse had slowed to 50. At that point my energy had dropped to the point where I slept almost all the time and could barely stand. If I did try to stand it was always a challenge to see how long I could be upright without passing out.

My normal BP is now around 115/70, and I do fine with that. I can stand up without thinking about it too much. Out of habit, I usually stand slowly, but I can usually jump up if I really want to. There are still times when I need to be careful, but that is not the norm now. Mornings, or when I am really tired are the worst for me.

If you have circulation problems, it is good to keep your feet elevated whenever possible. I probably look lazy, but I almost never sit without having my feet up on something.

I have also been wearing elastic stockings to help my circulation, especially in the winter. When my BP was really low, I wore the thigh high style, but now I get by with the knee highs.

John
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Interesting, John. If my BP is taken in the dr.'s office it is usually 110/68. If I take it at home after light standing/walking type activity, it will be lower. What is your BP, if I may ask? Also -- I have POTS.

This is strange. We share the same BP.
I have lightheadedness after standing or sitting a little while. My GP says that it is borderline but does nothing about it.
I am taking B12 supplements. I have also borderline anemia.

How about you, BEG?
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
The same with me. Digestion is one of the most energy consuming processes not only for us - PWC. Even healthy people feel tired after big meals, and because we are fatigued by default, we are two times more fatigued after meals. At least that's what I experience, and now you're telling me you have this problem too. I have even bigger problem because I'm always hungry and cannot eat small meals, I eat until I'm full. After that I usually have a period of one hour where I watch at one point and can't do almost anything else.
 

BEG

Senior Member
Messages
1,032
Location
Southeast US
Are you taking any b12? Lack of appetite is a symptom of b12 deficiency. When my old dog lost her appetite the vet gave her a b12 injection and the very next day her appetite went through the roof.

I haven't taken B12 injections for a year now. It's not been a good year. I tested deficient about 5 years ago, and perhaps I still am.

Boule, I have no problems with anemia.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Is this some kind of dream come true or the beginning of a bad downward spiral? At times, I don't have the energy for digestion. That means I don't get hungry because the last meal is still with me. After a meal, I'm totally grounded. I'm not eating large meals either, but trying to eat small meals to preserve energy. I didn't know that eating would begin to take such a large portion of my energy bank.

Anyone else with this problem? I would add, also, that this is significantly different from the person I used to be -- loved to eat.

Hello, how are you doing with your weight these days. I am losing weight too...
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Yeah - I'm with Kat on the ginger.

I find that I need to eat a lot, am still really skinny, and get a lot worse if I go too long without food. Others are really surprised at how much I eat. If I do have to delay eating, or eat less than normal, I really feel my symptoms worsening. I find nuts to be a helpful snack to have lying around... but I find it important to make sure I eat main meals, rather than just constant snacking.

I can feel tired out by eating too... but think this is much better than the alternative of getting gradually more tired because of not eating quite enough.

Good luck with it.

What symptoms do you find worsening if you don't eat enough? How is your fatigue vs. Weight doing? Do you feel eating despite the fatigue to keep the weight up has helped gradually your fatigue as well? Or has your fatigue become worse due to eating to keep up your weight, thanks! I am losing weight now, due to not eating animal protein because digesting that worsens my fatigue...Stuck!
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
When I went thru my weight loss problems, my BP had dropped to 80/50 and my pulse had slowed to 50. At that point my energy had dropped to the point where I slept almost all the time and could barely stand. If I did try to stand it was always a challenge to see how long I could be upright without passing out.

My normal BP is now around 115/70, and I do fine with that. I can stand up without thinking about it too much.

John

We're you able to gain back your weight, and your energy with it, thanks
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
The same with me. Digestion is one of the most energy consuming processes not only for us - PWC. Even healthy people feel tired after big meals, and because we are fatigued by default, we are two times more fatigued after meals. At least that's what I experience, and now you're telling me you have this problem too. I have even bigger problem because I'm always hungry and cannot eat small meals, I eat until I'm full. After that I usually have a period of one hour where I watch at one point and can't do almost anything else.

Hello, how have you been doing with your meals , weight and energy, thanks.
 

Kati

Patient in training
Messages
5,497
Hi, I really wish weight loss was a problem for me, but I went the other way. i gained about 100 lbs. I have lost some, and I have needed to work at it like you would never believe. I have now gained back some ofmwhat
I lost, because have not been as dilligent about measuring and weighing and tracking everything that goes in my mouth.

I wanted to put it out there that there are some of us gaining, not loosing.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
@Dr.Patient I lost about 10 kgs during the worst of my illness and I was skinny to start with. This improved after I worked on my gut. I had IBS after becoming ill with ME/CFS and developed many food allergies and intolerances. Also had gastric reflux and problems digesting food.

My diet was already relatively healthy, but I then changed my diet dramatically to cut out gluten, dairy, soy, FODMAPs and a lot of other problem foods and this has helped. My IBS is greatly improved and I have regained about 5 kgs (much needed).

It was tricky working out a healthy diet with these limitations, plus I am a skinny type 2 diabetic on meds and have high cholesterol due to genetics. I did my own research and also saw a dietician. Mostly it was trial and error.

One thing I noticed was I definately felt more fatigue and generally unwell if I didn't take in enough calories and protein. The ME/CFS specialist I see recently talked about the importance of sufficient protein for sufferers of this illness. You might want to consider alternative sources of protein which are more easily digestible. Some people use protein shakes. I have not tried these. When I am up to it I make fresh juices or smoothies. This is another way of getting nutrients in an easily digestible form.

It was difficult juggling all of my dietary needs and restrictions, but this is one area where I have improved.

Best wishes, Andy.
 
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