For me, the gut issues, the sleep disturbance and hair loss all came before the fatigue. They all seem to be linked. The malabsorption and food sensitivity is a particular nightmare. I have to take a lot of supplements, some of which taste really awful, expensive too, but I really have no choice. There are so many foods I miss that I just can't eat anymore.
I actually got started on my M.E journey by my gut . First doc was a GI looking for celiac . 5 years later ,here we are . IBS and extreme nausea which opens my dizziness ,brain fog and fatigue . Removing the food sensitivity helps a bit. I agree with the probiotics and supps to help with absorption. I included a naturopath and dietician 🎉 helps . Way better than few years ago
I have had diarrhea since mid May. At first, it was explosive where I was running between my bed and the bathroom. I got my 10,000 steps in but not in a way that I dreamed of. This is the first time I've had this happen. The diarrhea is just now abating. I saw a gastroenterologist who tested me for everything under the sun and kept saying that it looks like my liver is having a problem. It was at first but then he realized I'd been taking Methotrexate for about 40 years. He had me stop the MTX in April and my liver enzymes improved dramatically in a shorter period that he anticipated. But then the diarrhea continued so much so that I have hardly been able to eat most things. Now I am able to eat more. But this was a first time I've ever had this kind of thing. It wiped me out in a way that no other "flare" has. My symptoms have been more achy, tired, weak, etc. I got a diagnosis of Sjogren's in the past two months, so now I have RA and Sjogren's and ME/CFS. I still have not found any doc in my area who works with ME/CFS.
A lesser issue for me, but there, nonetheless. And so glad it isn't worse! But I do try my best to keep my diet under control because when it does get bad, it is definitely a triggering episode. Thx!
You speak what many docs will not even say. The gut issues my entire life, the foods we are subjected to, it blows my mind that people haven’t connected all of these things so much sooner. It took me a long time to realize that I just can’t eat what other people eat and feel ok afterwards. Thanks for another great reminder.
I’m 80 but have cfs since Age 28. I’ve recently developed gut issues. Pain in abdominal area. Currently my doctor has ordered tests lookin at my gallbladder. Over the years I’ve had and tried to deal with them. I had not known that gut issues were connected with cfs. Thank you for this video.
So sad for you😢You've had your life stolen away by misunderstood M.E/cfs with NO Support,NO Recognition (prob only known as cfs back then & prob called a mental issue too😡!!! Really feel for you...OMG..❤😢😢😢
Oh my gosh! You nailed it with the gallbladder pain and gut pain!! That has been bad and new with this most recent onset just over 2 years ago. So many of these symptoms you mentioned are what I suffer with. I have documented d some but I’m not as consistent as I should be. I’m going to start tracking my symptoms.
I’ve had CFS since age 40. I am now 73. I developed serious gut issues about 10 years ago. Three years ago I worked with a nutritionist who specializes in IBS/D and she instructed me on the FODMAP diet. It took several months of strict adherence but it worked. It requires an elimination diet, then gradually reintroducing foods to see the reaction. Patience is key. Now I must stay faithful to the guidelines but can occasionally a have a food I miss but had to eliminate from my diet. One problem solved.
I went vegan 5 yrs ago, it has made so much difference to so many things. It reduced inflammation by a significant amount. Inflammation in my knees, wrists, ankles, just everywhere It has calmed all my gut issues, constipation, period poo, nausea, the lot I have reduced flares in general I didn't go vegan to manage physical issues but it made such a difference It takes awhile to settle into & I'm blessed to have a partner who takes care of me but vegan meal delivery is available I know it's the diet change because when I eat meat & dairy it comes back. I'm not a self flagellating vegan, I had cheese Twisties this week & my dermatitis kicked up, my wrists & shoulders got inflamed, I slept until 3pm the next day I was so tired. If you go vegan, get help & support. There's plenty here on RUclips
Symptoms flaring up all the others...... Felt this hard. People don't understand. And that's not even including any other illness you experience on top of the ME/CFS. Thank you for this 💙💙
Every time I go into a crash, it starts with gut issues. Acute and intense. Gut drain is what I call it. Even my tongue gets affected. With geographic tongue signs. Red and pale markings with soreness. Crohn syndrome can also give this, but that is ruled out for me. What I eat does not matter, I get these symptoms anyway. But I now take probiotics daily, and when I'm too weak to eat, I drink nutritional drinks (do not know what you call it) prescribed by nutritionist. I'm lactose intolerant, so I take lactase enzymes capsules as well when needed. Far to few speak of these issues. So thank you yet again!!!
I had IBS before the onset of ME. Symptoms got significantly worse afterwards, but I didn't know if they were related. You're right, it doesn't seem like gut issues get mentioned much within the community. Thank you for this video! I suspect the increase in symptom severity is actually due to aggravation of my ME. Love your videos, keep 'em coming!
Thank you. I have had ME since 1986 and am now 80. I have had nausea all weekend and just saw your video. The thing is we often feel guilty blaming ME for things so this video was a relief for me. I will add i carefully watch my diet
Yup. Don't forget the gluten intolerance! I'm nauseous every day! Gallbladder gone. Pace yourself during activities & exercise. My Fibromyalgia Flares also cause my arthritis to flare with hard itchy bumps on my finger knuckles. Another tell-tail sign we have ME/CFS is a low body temperature. Normal is 98.6. We tend to run 96.8. How about you? Thanks for the video! Rose💜
Hi Guys..I left a comment on last video,live chat, didn't kno where else to leave one as no media😢 marked.. **..Would be so appreciate if anyone had time/energy to read & comment.PLEASE, Id be so grateful,thank you All😊
Some recent UK research suggested that IBS symptoms seem to be the most common co - morbidity with ME. I was diagnosed with ME 10 years ago, all the usual symptoms, plus the stomach issues. I had read some anecdotal accounts that a gluten-free diet might help, so I gave it a go. 18 months on, I think it has helped. I still get some symptoms when I get a flare-up, but more manageable. I also try not to eat too much ultra processed food.
Weirdly, I’ve had gut issues since my twenties when I was plagued with stomach ulcers and would be in agony that I put down to stress due to parents divorce and subsequent step-family; it wasn’t until 40yrs ish later - 2018 - that I was diagnosed with ME. I have certain food sensitivities, especially spicy foods, but sometimes it’s something random. I also developed an intolerance to egg whites which happened when training for and competing in bodybuilding in 2009 and that I again put down to stress and the high levels of protein intake.. But no, yet another delight of ME 😂 I take Omeprazole every day and also liquid Gaviscon if I’m really bad with a burning stomach. I also find that if my stomach’s bad, I’m then doubly exhausted..Stomach issues are 💯 ME related, no matter what Drs may think/say. Thanks as always from the UK 🙏
@@TraceyBarracloughInspiration same! I’ve had so many things from IBS to endometriosis to prove to me that I’m not a wimp, but in my late teens, I started to think I was a hypochondriac and had no tolerance for pain. Turns out, I’m a bada$$. 😂. The first doctor that really listened to me told me that. I understand everything you said. It’s like I wrote it.
I'm learning more about autonomic dysfunction in ME/CFS. I've learned my IBS (C&D) is usually a result of a sympathetic or parasympathetic swing. Just no idea how to regulate the ANS.
Thanks so much,for normalising so many symptoms = were not alone😊Thank God ive found your channel,even tho only recently❤your videos are invaluable to me & Im sure everyone else too.Yep same,but as you say "you dont hear about it" Sounds like you have an amazing Dr.who listens & also keeps checking you out & testing different symptoms as arise.Is it a GP with special Interest in M.E, M.E Dr, or a Specialist in some area?? Most interested to kno as currently have no one...& there is no one!! Another country otherwise be off like a shot to see yours😊hope you & all channel are ok as can be❤😊
Hello. I have nausea everyday. Right now I use Dramamine nausea chews daily, as part of my medication repertoire. They help, but I still have mild breakthroughs. Before I got sick with ME/CFS I was, ironically, a nutritionist. I know nutrition and understand meal planning. I have tried many things. I am currently scheduled for an assessment for gastroparesis. I have many signs of this condition. I have absorption issues and chronic anemia. Definite issues with slow digestion. I now eat many small snack "meals" during the day. These issues are extremely common in ME/CFS patients. I think I read that 70% of people with ME/CFS have some level of digestive and gastrointestinal issues. Be well everyone. 🙏💛💛🙏
I never correlated my gut issues with ME/CFS. I have huge bloating issues and a mixture of diarrhea, constipation and floating poops. I wake up at night sweating and sometimes have to use the bathroom at strange times. I get very nauseous too. Probiotics constipate me and I have a hard time digesting things like fermented foods. I have ulcers also. I sound terrible! I try to stay positive.
Agree 👍 also peppermint oil .. organic.. I keep a couple of drops in a water bottle on hand always shake before drinking... it can take getting use to. Helps with diarrhea nausea inflammation stomach aches tons more Apply it on skin dilute, (it's considered a hot oil) Apply on stomach And joints for any pain Gargle good for tounge and gums... Everyone is different and what helps.. Many more oils out there. Turmeric helps Apple cider vinegar baths and soaking feet For body pain and excellent for hair and skin Also drinking it Like reg coffee mug Water, cap full of ACV With honey. Drink to your liking and taste Baking soda and water juice glass Trillion properties to it This is all old school.. Teas are good part of diet... So much crap in our foods and drinks. I've put out stuff for wildlife and they don't touch majority of it anymore... 😢 Lot's of wildlife gone as well no food for them in the wild. Pray over your foods and drinks is our only hope 🙏 Doctors know what is up Only Way to do anything about it is naturally as possible.. God Bless You All ❤
Hi there fibromyalgia since 2011 being diagnosed with ME at mo. Just made a channel today to start talking about my experiences. I have IBSD too. It really isn't talked about enough. Thank you for your videos x
I had terrible gut issues, I find 2 food replacement shakes, and 1 decent meal a day sorted it. I have to try not to eat too much, and I also have lots of water with hydration tablets in the water.
My first symptoms were chronic diarrhea. After approximately 2-3 months fatigue. Then muscle weakness, dizziness, heavy breathing, ect. I was 34 when the health issues started and 39 when I got disabled.
I'm new .. well since last night lol Thank you my Dude for theses videos. It's real and embarrassing but can eventually make a person a bit humble through embarrassment.. I'm embarrassed so much i don't care ... I will share my embarrassing experiences that other's may not feel comfortable Its about poop and gross Ya do what you have to do while in pain and in the moments... I apologize if I misunderstood. But here it goes....
I don't know what these abbreviations are...? But ya all talking same things as me... I have PTSD Severe stress Traumatic Brain Injury Lived in mold Broken jaw/mandible Fractured teeth And breaks Chronic pain All these health issues mentioned even before injuries. Just intensivde I've personally learned that the body works as a whole! Everything is connected.. If tmj it will make you feel and get sick.. and pains Anything teeth and jaw out of waak messes you up.. hormones Ya know, all things that should be regularly checked at doctors appointments.. to catch ahead of it all.. But no one makes money when we don't feel good.. 😕
Full Version here ➡ studio.ruclips.net/user/videovayzcWkL8_0/edit
For me, the gut issues, the sleep disturbance and hair loss all came before the fatigue. They all seem to be linked. The malabsorption and food sensitivity is a particular nightmare. I have to take a lot of supplements, some of which taste really awful, expensive too, but I really have no choice. There are so many foods I miss that I just can't eat anymore.
Hugs I hear you, I’m right there with you ❤
I actually got started on my M.E journey by my gut . First doc was a GI looking for celiac . 5 years later ,here we are . IBS and extreme nausea which opens my dizziness ,brain fog and fatigue . Removing the food sensitivity helps a bit. I agree with the probiotics and supps to help with absorption. I included a naturopath and dietician 🎉 helps . Way better than few years ago
I have had diarrhea since mid May. At first, it was explosive where I was running between my bed and the bathroom. I got my 10,000 steps in but not in a way that I dreamed of. This is the first time I've had this happen. The diarrhea is just now abating. I saw a gastroenterologist who tested me for everything under the sun and kept saying that it looks like my liver is having a problem. It was at first but then he realized I'd been taking Methotrexate for about 40 years. He had me stop the MTX in April and my liver enzymes improved dramatically in a shorter period that he anticipated. But then the diarrhea continued so much so that I have hardly been able to eat most things. Now I am able to eat more. But this was a first time I've ever had this kind of thing. It wiped me out in a way that no other "flare" has. My symptoms have been more achy, tired, weak, etc. I got a diagnosis of Sjogren's in the past two months, so now I have RA and Sjogren's and ME/CFS. I still have not found any doc in my area who works with ME/CFS.
A lesser issue for me, but there, nonetheless. And so glad it isn't worse! But I do try my best to keep my diet under control because when it does get bad, it is definitely a triggering episode. Thx!
Ten years of chronic, explosive diarrhea actually went away when I got sick. Thank God, because I'm severe and bedridden! Lol
Severe & bedridden😢😢....❤😊
You speak what many docs will not even say. The gut issues my entire life, the foods we are subjected to, it blows my mind that people haven’t connected all of these things so much sooner. It took me a long time to realize that I just can’t eat what other people eat and feel ok afterwards.
Thanks for another great reminder.
I’m 80 but have cfs since Age 28. I’ve recently developed gut issues. Pain in abdominal area. Currently my doctor has ordered tests lookin at my gallbladder. Over the years I’ve had and tried to deal with them. I had not known that gut issues were connected with cfs. Thank you for this video.
So sad for you😢You've had your life stolen away by misunderstood M.E/cfs with NO Support,NO Recognition (prob only known as cfs back then & prob called a mental issue too😡!!! Really feel for you...OMG..❤😢😢😢
Oh my gosh! You nailed it with the gallbladder pain and gut pain!! That has been bad and new with this most recent onset just over 2 years ago. So many of these symptoms you mentioned are what I suffer with. I have documented d some but I’m not as consistent as I should be. I’m going to start tracking my symptoms.
Whoohoo, there is one symptom I don't have. But I still have to be careful what i eat.
😊👍🏻🍀🍀🤞🏻😊
I’ve had CFS since age 40. I am now 73. I developed serious gut issues about 10 years ago. Three years ago I worked with a nutritionist who specializes in IBS/D and she instructed me on the FODMAP diet. It took several months of strict adherence but it worked. It requires an elimination diet, then gradually reintroducing foods to see the reaction. Patience is key. Now I must stay faithful to the guidelines but can occasionally a have a food I miss but had to eliminate from my diet. One problem solved.
I went vegan 5 yrs ago, it has made so much difference to so many things.
It reduced inflammation by a significant amount. Inflammation in my knees, wrists, ankles, just everywhere
It has calmed all my gut issues, constipation, period poo, nausea, the lot
I have reduced flares in general
I didn't go vegan to manage physical issues but it made such a difference
It takes awhile to settle into & I'm blessed to have a partner who takes care of me but vegan meal delivery is available
I know it's the diet change because when I eat meat & dairy it comes back. I'm not a self flagellating vegan, I had cheese Twisties this week & my dermatitis kicked up, my wrists & shoulders got inflamed, I slept until 3pm the next day I was so tired.
If you go vegan, get help & support. There's plenty here on RUclips
Symptoms flaring up all the others...... Felt this hard. People don't understand.
And that's not even including any other illness you experience on top of the ME/CFS. Thank you for this 💙💙
Every time I go into a crash, it starts with gut issues. Acute and intense. Gut drain is what I call it. Even my tongue gets affected. With geographic tongue signs. Red and pale markings with soreness. Crohn syndrome can also give this, but that is ruled out for me. What I eat does not matter, I get these symptoms anyway. But I now take probiotics daily, and when I'm too weak to eat, I drink nutritional drinks (do not know what you call it) prescribed by nutritionist. I'm lactose intolerant, so I take lactase enzymes capsules as well when needed.
Far to few speak of these issues. So thank you yet again!!!
Vagus Nerve is the most common reason for gut issues especially if it goes with POTS and head pain
I had IBS before the onset of ME. Symptoms got significantly worse afterwards, but I didn't know if they were related. You're right, it doesn't seem like gut issues get mentioned much within the community.
Thank you for this video! I suspect the increase in symptom severity is actually due to aggravation of my ME. Love your videos, keep 'em coming!
Thank you. I have had ME since 1986 and am now 80. I have had nausea all weekend and just saw your video. The thing is we often feel guilty blaming ME for things so this video was a relief for me. I will add i carefully watch my diet
Yup. Don't forget the gluten intolerance! I'm nauseous every day! Gallbladder gone. Pace yourself during activities & exercise. My Fibromyalgia Flares also cause my arthritis to flare with hard itchy bumps on my finger knuckles.
Another tell-tail sign we have ME/CFS is a low body temperature. Normal is 98.6. We tend to run 96.8. How about you?
Thanks for the video!
Rose💜
Yep low body temp!! thanks as didn't know of that😊thanks so much keep well😊
My body temp has always been are 96,7. Never caught on until you made your comment ..
Hi Guys..I left a comment on last video,live chat, didn't kno where else to leave one as no media😢 marked.. **..Would be so appreciate if anyone had time/energy to read & comment.PLEASE, Id be so grateful,thank you All😊
Some recent UK research suggested that IBS symptoms seem to be the most common co - morbidity with ME. I was diagnosed with ME 10 years ago, all the usual symptoms, plus the stomach issues. I had read some anecdotal accounts that a gluten-free diet might help, so I gave it a go. 18 months on, I think it has helped. I still get some symptoms when I get a flare-up, but more manageable. I also try not to eat too much ultra processed food.
Weirdly, I’ve had gut issues since my twenties when I was plagued with stomach ulcers and would be in agony that I put down to stress due to parents divorce and subsequent step-family; it wasn’t until 40yrs ish later - 2018 - that I was diagnosed with ME. I have certain food sensitivities, especially spicy foods, but sometimes it’s something random. I also developed an intolerance to egg whites which happened when training for and competing in bodybuilding in 2009 and that I again put down to stress and the high levels of protein intake.. But no, yet another delight of ME 😂 I take Omeprazole every day and also liquid Gaviscon if I’m really bad with a burning stomach. I also find that if my stomach’s bad, I’m then doubly exhausted..Stomach issues are 💯 ME related, no matter what Drs may think/say. Thanks as always from the UK 🙏
@@TraceyBarracloughInspiration same! I’ve had so many things from IBS to endometriosis to prove to me that I’m not a wimp, but in my late teens, I started to think I was a hypochondriac and had no tolerance for pain.
Turns out, I’m a bada$$. 😂. The first doctor that really listened to me told me that.
I understand everything you said. It’s like I wrote it.
@@IncognitoGypsy it helps doesn’t it to be in a space where we get it, and each other. Makes things a little bit easier somehow 🧡
And we’re definitely bad ass’s to even keep going every day 😂💪
🥀Aweful to deal with but good to actually hear it🥀Thanks greatly🥀
I'm learning more about autonomic dysfunction in ME/CFS. I've learned my IBS (C&D) is usually a result of a sympathetic or parasympathetic swing. Just no idea how to regulate the ANS.
I hate the nausea and cramping plus the bonus cold seats when I go to the toilet 😩 some times I get very dizzy too this illness is horrible
I get the cold sweats too. Along with rapid heart rate. All before needed to use the restroom.
Thanks so much,for normalising so many symptoms = were not alone😊Thank God ive found your channel,even tho only recently❤your videos are invaluable to me & Im sure everyone else too.Yep same,but as you say "you dont hear about it" Sounds like you have an amazing Dr.who listens & also keeps checking you out & testing different symptoms as arise.Is it a GP with special Interest in M.E, M.E Dr, or a Specialist in some area?? Most interested to kno as currently have no one...& there is no one!! Another country otherwise be off like a shot to see yours😊hope you & all channel are ok as can be❤😊
I hate doctors. I talk about CFS/ME and my symptoms and they look at me like I'm an idiot.
I've had Doctors like that. Its the worst!
Hello. I have nausea everyday. Right now I use Dramamine nausea chews daily, as part of my medication repertoire. They help, but I still have mild breakthroughs. Before I got sick with ME/CFS I was, ironically, a nutritionist. I know nutrition and understand meal planning. I have tried many things. I am currently scheduled for an assessment for gastroparesis. I have many signs of this condition. I have absorption issues and chronic anemia. Definite issues with slow digestion. I now eat many small snack "meals" during the day. These issues are extremely common in ME/CFS patients. I think I read that 70% of people with ME/CFS have some level of digestive and gastrointestinal issues.
Be well everyone. 🙏💛💛🙏
Yes all of the above thank you ❤❤
I never correlated my gut issues with ME/CFS. I have huge bloating issues and a mixture of diarrhea, constipation and floating poops. I wake up at night sweating and sometimes have to use the bathroom at strange times. I get very nauseous too. Probiotics constipate me and I have a hard time digesting things like fermented foods. I have ulcers also. I sound terrible! I try to stay positive.
Guys peppermint tea is good for gut issues
With Thanks😊😊
Agree 👍 also peppermint oil .. organic..
I keep a couple of drops in a water bottle on hand always shake before drinking... it can take getting use to.
Helps with diarrhea nausea inflammation stomach aches tons more
Apply it on skin dilute, (it's considered a hot oil)
Apply on stomach
And joints for any pain
Gargle good for tounge and gums...
Everyone is different and what helps..
Many more oils out there.
Turmeric helps
Apple cider vinegar baths and soaking feet
For body pain and excellent for hair and skin
Also drinking it
Like reg coffee mug
Water, cap full of ACV
With honey. Drink to your liking and taste
Baking soda and water juice glass
Trillion properties to it
This is all old school..
Teas are good part of diet... So much crap in our foods and drinks. I've put out stuff for wildlife and they don't touch majority of it anymore... 😢 Lot's of wildlife gone as well no food for them in the wild.
Pray over your foods and drinks is our only hope 🙏
Doctors know what is up
Only Way to do anything about it is naturally as possible.. God Bless You All ❤
Hi there fibromyalgia since 2011 being diagnosed with ME at mo. Just made a channel today to start talking about my experiences. I have IBSD too. It really isn't talked about enough. Thank you for your videos x
I had terrible gut issues, I find 2 food replacement shakes, and 1 decent meal a day sorted it. I have to try not to eat too much, and I also have lots of water with hydration tablets in the water.
My first symptoms were chronic diarrhea. After approximately 2-3 months fatigue. Then muscle weakness, dizziness, heavy breathing, ect. I was 34 when the health issues started and 39 when I got disabled.
I have anemia, had it as a child but as an adult i realise its related to my gut issues and failure to absorb food due to CFS
If you could emphasize that constipation is IBS as well
I'm new .. well since last night lol
Thank you my Dude for theses videos. It's real and embarrassing but can eventually make a person a bit humble through embarrassment.. I'm embarrassed so much i don't care ... I will share my embarrassing experiences that other's may not feel comfortable
Its about poop and gross
Ya do what you have to do while in pain and in the moments... I apologize if I misunderstood. But here it goes....
Almost everyday, pain and nausea. Never had problems with nausea earlier in life. I could eat anything I wanted. Now, not so much.
I don't know what these abbreviations are...?
But ya all talking same things as me...
I have PTSD
Severe stress
Traumatic Brain Injury
Lived in mold
Broken jaw/mandible
Fractured teeth
And breaks
Chronic pain
All these health issues mentioned even before injuries. Just intensivde
I've personally learned that the body works as a whole! Everything is connected..
If tmj it will make you feel and get sick.. and pains
Anything teeth and jaw out of waak messes you up.. hormones
Ya know, all things that should be regularly checked at doctors appointments.. to catch ahead of it all..
But no one makes money when we don't feel good.. 😕
ME (Myalgic Encephalomyelitis) CFS (Chronic Fatigue Syndrome)
Friendly reminder to feed your probiotics with PREbiotics! ❤
❤
Ingredients in foods and drinks have been messed with. Is why problems
Nothing to do with age or whatever Gaslighting they do