1. < Just Want to Talk

ME/CFS and loss appetite

Posted by karina77 @karina77, Apr 15, 2019

Hey guys!
I am a 17 year old female with Myalgic Encephalomyelitis(known as Chronic Fatigue Syndrome) and Orthostatic Intolerance! Iver these past few months I have experienced a loss of appetite. At one point I lost about 10lbs, but managed to gain it back! I have difficulty eating a large amount of food, I feel sick after, and the thought of eating also makes me feel sick. I have never thrown up from this, but I just feel really sick. I’m fighting through and I have gotten such incredible support from those closest to me! Everyone on here has been so kind, loving and helpful! Love you all💕 Any answers would help:)

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Ethan McConkey, Moderator | @ethanmcconkey | Apr 16, 2019

Hi @karina77 that must be so frustrating to lose so much weight, and to feel sick after eating.

I wanted tag fellow Connect members @sita, @kellye5, @susangs and @jmmb as they may be able to share if they have had similar symptoms with ME/CFS.

Back to you @karina77 do you feel sick after eating any amount of food or just large quantities?

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2 replies
karina77 | @karina77 | Apr 16, 2019
In reply to @ethanmcconkey "Hi @karina77 that must be so frustrating to lose so much weight, and to feel sick..." + (show)
@ethanmcconkey

Hi @karina77 that must be so frustrating to lose so much weight, and to feel sick after eating.

I wanted tag fellow Connect members @sita, @kellye5, @susangs and @jmmb as they may be able to share if they have had similar symptoms with ME/CFS.

Back to you @karina77 do you feel sick after eating any amount of food or just large quantities?

Jump to this post

Hi! Any amount! Today my mom made me a sandwich and I just felt sick after. It’s after I eat pretty much anything.

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1 reply
lioness | @lioness | Apr 16, 2019

#karina77 I just read your post I'm so sorry to hear how miserable you must be Are you seeing a G.I. Dr and has he run all kinds of test plus endo@colonoscopy ?

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1 reply
karina77 | @karina77 | Apr 16, 2019
In reply to @lioness "#karina77 I just read your post I'm so sorry to hear how miserable you must be..." + (show)
@lioness

#karina77 I just read your post I'm so sorry to hear how miserable you must be Are you seeing a G.I. Dr and has he run all kinds of test plus endo@colonoscopy ?

Jump to this post

Hi! I want to thank you both for your replies, I honestly appreciate it. I have not seen a G.I. Doctor. I see Dr. Fischer at the Mayo Clinic, in Children's Pediatrics. Me and my parents are trying to get an appointment with him again, but it could take a few weeks-months to get in.

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1 reply
lioness | @lioness | Apr 16, 2019
In reply to @karina77 "Hi! I want to thank you both for your replies, I honestly appreciate it. I have..." + (show)
@karina77

Hi! I want to thank you both for your replies, I honestly appreciate it. I have not seen a G.I. Doctor. I see Dr. Fischer at the Mayo Clinic, in Children's Pediatrics. Me and my parents are trying to get an appointment with him again, but it could take a few weeks-months to get in.

Jump to this post

@karina777 I know you have a Dr but would it be possible for you to talk to him and ask about a G I Dr?

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1 reply
JK | @contentandwell | Apr 16, 2019
In reply to @karina77 "Hi! Any amount! Today my mom made me a sandwich and I just felt sick after...." + (show)
@karina77

Hi! Any amount! Today my mom made me a sandwich and I just felt sick after. It’s after I eat pretty much anything.

Jump to this post

@karina77 I can't imagine going through this at such a young age. It sounds as if you do have a lot of support, I am happy about that. You shouldn't have to go through this alone. Make sure you get on a wait list at Dr. Fischer's office. I have been able to get in to see doctors much more quickly a number of times when I was.
JK

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1 reply
karina77 | @karina77 | Apr 16, 2019
In reply to @lioness "@karina777 I know you have a Dr but would it be possible for you to talk..." + (show)
@lioness

@karina777 I know you have a Dr but would it be possible for you to talk to him and ask about a G I Dr?

Jump to this post

I am definitely going to check with my doctor first to rule some stuff out before I meet with any other doctor:) But I will most definitely look into to!

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karina77 | @karina77 | Apr 16, 2019
In reply to @contentandwell "@karina77 I can't imagine going through this at such a young age. It sounds as if..." + (show)
@contentandwell

@karina77 I can't imagine going through this at such a young age. It sounds as if you do have a lot of support, I am happy about that. You shouldn't have to go through this alone. Make sure you get on a wait list at Dr. Fischer's office. I have been able to get in to see doctors much more quickly a number of times when I was.
JK

Jump to this post

Thank you so much! I honestly appreciate it! Mayo is supposed to call back about setting up an appointment. I should be able to get in between now and my birthday!

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dan1940 | @dan1940 | Mar 20, 2022
In reply to @ethanmcconkey "Hi @karina77 that must be so frustrating to lose so much weight, and to feel sick..." + (show)
@ethanmcconkey

Hi @karina77 that must be so frustrating to lose so much weight, and to feel sick after eating.

I wanted tag fellow Connect members @sita, @kellye5, @susangs and @jmmb as they may be able to share if they have had similar symptoms with ME/CFS.

Back to you @karina77 do you feel sick after eating any amount of food or just large quantities?

Jump to this post

I got lyme 2 years ago. Lyme has been treated but I have chronic fatigue or lethargy..there is difference…, feel cold a lot, can’t eat normally. I get down smoothie w 40 G protein powder. Difficult to get down. Not hungry all day. Smoke marijuana in eve which allows me to snack. I lost lot of weight but gain most back. I do workout but greatly reduced to 1/2 hour every 2 days. Can CFS be treated? This group is helpful. Thank you.
Dan M

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 20, 2022
In reply to @dan1940 "I got lyme 2 years ago. Lyme has been treated but I have chronic fatigue or..." + (show)
@dan1940

I got lyme 2 years ago. Lyme has been treated but I have chronic fatigue or lethargy..there is difference…, feel cold a lot, can’t eat normally. I get down smoothie w 40 G protein powder. Difficult to get down. Not hungry all day. Smoke marijuana in eve which allows me to snack. I lost lot of weight but gain most back. I do workout but greatly reduced to 1/2 hour every 2 days. Can CFS be treated? This group is helpful. Thank you.
Dan M

Jump to this post

Hi @dan1940, welcome. Let me introduce you to a few other ME/CFS members like @petuniamom567 @karina77 @rarelybees2889 @chaun2947 @clutch @sita @elik @jmmb @susangs @canadagal @sundance6 and others.

Dan, you might also be interested in reviewing the posts in this discussion:
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Being active can be helpful. People with chronic fatigue syndrome who experience a worsening of their symptoms after physical, mental or emotional effort may have post-exertional malaise and it can last for days or weeks after the exertion.

Have you experienced post-exertional malaise? What helps you find a good balance between activity and rest, to remain active without overdoing it?

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