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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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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@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?

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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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#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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@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 ?

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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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@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.

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@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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@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.

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@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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@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?

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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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@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

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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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@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?

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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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@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

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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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Interesting that you feel cold. I'm much colder than most people most of the time. Keep my house very warm. Outside, 80 to 85 is the perfect temp
for me. I personally haven't found any doctor with any treatment suggestions. Exercise doesn't work. Get post exertional malaise. Did go to pt and have a few exercises I do before bed each night. Have definite limit. No one really seems to be able pinpoint what this disease is. But's here and it's been here for about 40 years. That's as long as I've had it. Started to read about it when I got it. Have always been fascinated by the fact that it seems to have bloomed just about the same time as the AIDS epidemic. No one has tied the two together. Still, I find this fact interesting. Hope you feel as well as you can feel.Think it might be helpful to form a talk group on Connect so people can compare symptoms and medical experiences.

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@colleenyoung

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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I definitely have postexertional malaise. Recently spent about 2 months sitting sleeping in chair due to sciatica pain. I have hurt shoulder and hip because of overall weakness so still recovering from that. I thought lyme/mold infections cured after 2 years good treatment. So I can’t tell if I get lyme/mold flares, or still weak from sciatica or in fact it’s CFS. Thank you for response.

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