ME/CFS: Symptoms | Gut issues 

We've not been sure why I've lost 20 lbs in the past two years. My baseline weight has changed and I think it's because my body rejects food. I naturally stop eating whatever it is that is acting as a trigger. THIS seems to by why I've lost weight. Great news! THANK YOU SO MUCH FOR ALL THE TIME AND ENERGY YOU'VE PUT INTO THIS. KNOWING THAT YOUR ENERGETIC (ha ha) TIME IS LIMITED, I AM VERY IMPRESSED WITH YOUR DEDICATION TO THIS COMMUNITY.

These videos are so informative. I get the dizzy thing when I stand and gut issues too. By far the worst part for me is the fatigue. I just can’t do what I want to and have to pace myself. It’s still a confusing process in a lot of ways.

Hi there🙋🏽‍♀️Gut issues are a big deal for sure. I cannot have anything spicy whatsoever. I cannot have pepper anymore either. I pretty much stick to Himalayan salt, which is fine. I can have a little garlic and I mean very little. I did notice that when my gut is in bad shape it usually means there is inflammation going on...still haven’t figured out which came first in some cases, the diet or the inflammation. I’m in a flare right now and recovering from a severe migraine. I traveled out of state and believe I messed up my diet in the process...I cheated “one time” and that’s all it took. Also, what has worked for me the last few months, as far as diet, is not working for me right now so I will have to make more changes. Basically I’ve had to go totally bland with my diet. The nausea is one of the most uncomfortable and chronic symptoms I deal with on a regular basis. I’ve been on daily anti nausea meds for years... I have noticed that stress can trigger a lot of my symptoms. Too much noise or sound can trigger my stress level, hence affecting my gut. This illness is a tricky one for sure. Thanks for the video and support. I hope you’re doing well friend.

Hi! Thanks for the focus on the gut. I have lots of sensitivities so will just highlight a few strange ones. Gluten and corn are common but it helped when I realized (hidden) corn syrup went with corn sensitivity, never eat chocolate and drink cola at same time, store's pre-washed lettuce (seems to be washed in very dilute bleach to prolong shelf life). I have had this for 40 years and have developed severe pain in my insides in upper abdomen with the bouncing and jolts of prolonged car travel. It takes LaMaze breathing to tolerate trips over 2 hours long. I usually need to replace electrolytes salt, potassium, magnesium, and calcium if I have the diarrhea too much. I get tingling, muscle twitching and cramps when they are low. Fortunately I can minimize the bellyaching by avoiding the triggers especially when in a flare. Hope this helps someone.

Thank you for mentioning daily nausea! It is a huge issue for me but I don’t hear about it very often.

I did not know until recently that ME/CFS occurs with mast cell activation syndrome. For me a very interesting aspect. I try to avoid certain triggers and imagine that it makes me feel a little better: - certain foods or drinks (especially alcohol and foods that contain a lot of histamine). - histamine liberators (also in the form of food additives) - temperature extremes and changes (heat, cold, sauna, etc.) - odors in the air (including perfume or smoke) - physical activity or exertion (e.g. sports, gardening) - emotional stress - hormonal changes (especially during adolescence, pregnancy or menstruation)

Spot on I have suffered with really bad IBS for years and also come over very nauseous at least once a day it’s like a wave so awful , funny I hadn’t linked it to my ME thanks for advise x

I have ME/CFS. I am afraid to eat because it worsens my other symptoms. Nausea is a big one.

You're the first person to mention gallbladder area pain/ discomfort. I feel it constantly along with nausea, beltching, feeling full. Does anyone else suffer like this?

I have had CFS/ME since I was a teenager. I am now 60. If I take a little less than 1mg of low dose naltrexone (LDN) my bowels will evacuate completely within about 30 minutes, usually diarrhea. Interestingly this would seem to be highly unusual as it is not being reported elsewhere. At any rate it would seem to indicate that my body is processing this drug differently than most and give some evidence that my body's opioid/immune regulation system is not working properly and perhaps even differently that other CFS sufferers. This makes me wonder if once they finally develop a test for CFS if it will indicate that I have CFS since my case presentation is quite different at least when it comes to this apparently unique reaction. I suffer from an irritable bowel and take 6mg of Immodium every day. It is my understanding that many CFS sufferers share this symptom. So perhaps my dramatic reaction to 1mg LDN is not so unique. It simply hasn't been recognized thanks to the lack of studies. Thanks pharmaceutical companies and medical system that has been failing me for decades now.

It's funny , I feel lucky, I only have the gut pain part, certain foods make it worse.. My newest general symptom is orthostatic intolerance. You look healthy. I hope you are doing well. I've asked several people to no longer ask how I'm feeling, drives me nuts. I am constantly dehydrated, w/o any diarrhea. I've recently heard of getting an IV for it. Sometimes is add salt to my water.

I have recently watched almost all your videos and man you hit everything on point for me and what I'm dealing with it. I'm currently in the middle of the doctors doing testing. I do say though my fiancee has made it easier sometimes when I feel really down cuz of it all. Thanks for videos and explaining everything

Nausea, and it flares up muscle fatigue, myalgia, brain fog, muscle weakness.. flu like symptoms, allergy type of reactions, loss of sleep. So many symptoms. I got tested for flu and covid again bc I thought it was coming back, having all of those symptoms.

I knew my nausea was linked to ME however I hadn't put the rest together even after 27 years. I can't eat tofu among other things or it's severe cramp and vomiting and if I'm crashing it's bathroom time. You're marvelous putting this all out there.

For me it's nausea😪

Seems like every doctor doesn’t have the knowledge needed for this. I wish I could find one that understands

I have had IBS for a long time. Yes, when my stomach starts hurting I also as a woman experience vaginal burning. I’ve been to doctors who don’t find any reasoning behind it. And, the worse my stomach sometimes with unbearable pain, my other symptoms greatly intensify. I need to work on my diet, so this is in the works. My belly is always blotted and I have nausea off and on. I like working with herbs and have made tinctures such as ginger drops that helps a lot when I experience nausea.

Everything you mentioned I experience. I had acid reflux and h.pilori before having fibromyalgia/m.e. but now I have more frequent bowel movements and terrible cramps. My stomach problems mainly stem from what I've eaten and I know I should avoid the triggering foods but I feel like I have to endure pain and fatigue all day, everyday, so I don't have any more energy to be strict with what I eat. But I'll have to change my diet because it definitely affects my stomach. Foods I ate all my life I can no longer eat. And I realise now that gut issues are part of flare ups now. I've been in a flare up for almost a month so I really need to incorporate better eating habits to reduce the flare ups.

Hope this doesn't sound morbid but I am getting older and was wondering if there is a need for body donations at any research centers? I have had CFS/ME for 23 years now and if any research is needed I'd like to get that in place. I live near SLC, UT.

I had methane sibo and still deal with constipation.

Hello. I was a ME sufferer for 10 years. For me the key to resolve it was my gut ,which I found that it was at a really pathetic state and I gave a massive fight to bring it to balance. Have you ever done a comprehensive stool analysis? If you haven't, you should. All the best

I feel like my fatigue and brain fog are almost gone I still have it but I have like just stomach cramps really it’s not like from food I just get it is that normal in me/cfs?

I find cutting out dairy, red meat, caffeine, soft drink and gluten really helps me. But as you said, it's different for everyone. Oh and pro and prebiotics and Metamucil are a lifesaver! For me anyway. Thank you.

Hey, I would love to get in touch with other M.E. sufferers

I have been recovering nicely from cfs but still have some gut issues. Does anyone here have stomach grumbles and weight loss over night?

I've got a permanent bloated belly. I can't eat anything. Tried carnivore diet and keto. Helped with pain in gut and joints but possibly made the fatigue worse. During a higher point, where I thought I was getting better, I added higher carb fruit to my diet, but had to cut them out because it caused arthritis in my wrists and hips. I also started to crash majorly after carbs. I'd feel like I wanted to pass out. Now my diet is super clean. I eat big salads, I make my own sauerkraut and yoghurt. I can eat dairy so long as it's A2 organic pasture raised, otherwise I get acne. I like Montezuma's 100% dark. That doesn't seem to hurt me!

DO YOU EVER DO ZOOM TALKS OR ANY KIND OF INTERACTIVE CONFERENCES?

My stomach is so bad lm scared to eat and there are few foods left that l can eat. Eating can cause pem for me, even eating small amounts can trigger it

Hi

Anyone here have CFS and body odor.