I had ME IN 1979- 1984 and could barely move, (good days, bad days) My current Doctor says ME is purely imaginary. I said I wish you could have ME for even two weeks and you'd know better.
I've been living with this illness for a year now. When it first started I was very positive and determined to not let it beat me. I worked out where my boundaries were fairly quickly so I knew what I could do and what was too much and I almost began to feel like my old self. This Christmas though my health took a turn for the worse and I was knocked back to square one, only this time I didn't have any positivity or determination left. All of the things you said in this video, I already knew. But somehow, hearing it from someone else who knows what it's like to live with this made it so much more real and important. Thank you for reminding me that giving up is not an option.
Annabelle, have you heard of LDN? Low Dose Naltrexone. I think I may make a video about it because I believe to be the most important treatment for ME at the moment. Please look into it, if you have not heard of it. Hope you are feeling well today.
Your videos are the best I've seen on YT!!! Thank you so much for your insight. You define our challenges so very well. I am finally able to understand the illness I've struggled with for over 20 years!! I'm 64 now. SO GRATEFUL TO YOU, Johnny. (I think that is your name). God bless you and be with you.
Thank you for making this video. I was diagnosed around the time that you posted this, but I didn't find it until now. For some odd reason it didn't occur to me to look through youtube to find some way to relate to other people that suffer with this. And it was odd to listen and hear some one else talking about this. Apart from the one helpful doctor I found. And it helped. I feel a little more optimistic about this now. I have been struggling with this illness for about 15+ years, and I've only been met with disbelief and sceptisism. My friends, family... anyone, questioned me and in the end I thought I was going insane. Blood tests were fine, no real indication as to what was wrong apart from me being really sick. I was told it was all in my head, that I was lazy, that I was being a hypocondriac and I was sent to goodness knows how many psychologists because... it had to be mental if they couldn't see anything physical. Then finally (after so many years) I was sent to a proper doctor, I got the diagnosis. And the first thought in my mind was to call everyone that had made me feel horrible about this and tell them "IT WASN'T ALL IN MY HEAD! F**K YOU!" of course I didn't do that. I try to stay positive most of the time, as hard as that can be. But finding your video, listening to your tips and so on has given me new hope that I might feel better some day. This has been a long and not so eloquent rant... But I needed to get this out and tell you how much I appreciated this video. Thank you.
I can relate all too well with your experience. The same thing happened to me. I was lucky to have an understanding family that helped a lot. Hang in there, learn as much as possible about ME and you will hopefully find some relief. If you're on facebook I highly recommend joining a group called "myalgic encephalomyelitis global" . Tons of great people with a lot of knowledge. Also check out 2 other videos I made. One is about LDN (helpful drug for people with ME that many don't know about) and the other is 5 quick and basic ways to feel better. I think those things will hopefully put you on the path to start feeling better. Best wishes
You're not alone. The first time cfs grabbed hold of me was nearly thirty years ago. I managed to get on for twelve years. Then having had some surgery set it off again. And the deterioration is accelerating rapidly now. I have been unable to work for five years now. All the time I described the symptoms and being a veterinarian myself knew what was wrong but no one believed me! Through YT I found out about all the new research, about Ehlers-Danlos-Syndrom, which I definitely have as well and I just want to scream at everyone who ignored, tormented and tortured me during all this time.
@@fight4me747 thank you for the information about LDN. I looked it up and it really makes sense to me. I tried Tramadol and it worked but the physical addiction was not nice and doctors and people treated me like a junkie. I have one doctor who believed me, he just didn't know how to help. I will ask him to work the LDN therapy out with me. Don't know if you can use it in Germany. Thank you for your videos. I will use them in the future to show people what my life feels like. I couldn't say it any better.
Where were you 5 years ago!? :) Your recommendations mimic my experience perfectly. I couldn't have said this any better to myself five years ago when I was diagnosed than you did here in this video. LDN is the #1 thing that has helped me too. Not a magic bullet, but it is a significant aid no doubt. Tried to stop taking it, and/or ran out, a dozen times and every time it has been a reminder how much it helps. Looking forward to more videos!
Thank you for this encouraging video. I'm going on year 7 of suffering from this, and I still fight to feel better. I'm going to go-to tge doctor to get the LDN.
Thank you so much for your informative and encouraging videos!! Wish I could have seen this video at beginning of m.e.!! Take care and God bless to you and family who understands!! You're a lifeline to people!! Jx 🙂👍🙋♀️
Exactly. A typical night for me- Finally fell asleep around midnight, woke up two thirty. Maybe after midnight.. stayed up a little, woke up at 5.30.. stayed up a little was woken up at 6:55 by my dad screaming. It is 7:16AM. Decided to just get up and opt for a light coffee.
Thank you so much for all this advice. I became sick in november 2021 with covid when i was 19 and ever since then ive been dealing with fatigue. I started doing more research on what i currently could be having and i seem to have 95% of all the cfs symptoms, so having tou tell all this information is really helpful, thx.
What is your status like at the moment? Are you housebound? I don't have ME/CFS, what does it feel like to have? I understand that some people say it feels like your legs weigh a ton, are your eye's always heavy? I hope you get better soon.
My symptoms were mild when I was in my early 20s so I didn't really look after myself at all that much. After two children & now I'm in my 30s my symptoms are way more in the moderate category :(
Just curious are you able to work full time for the last year I've been struggling to work lost my job that I had for over 14 years had them physically not able to do much of anything anymore just curious on what you do are you able to get disability or find a job that meets your needs?
Don’t suppose there is a link to a list of CFS knowledgeable doctors somewhere? My docs confirm I have have an autoimmune condition but oddly after almost a year have yet to narrow down to which specific condition, meanwhile the pain, fatigue, and brain fog is near constant to the point where I can barely do anything significant any given day. Everything I read and watch about CFS describes my situation eerily perfectly but no one has heard of it or seem unwilling to acknowledge CFS.
What is LDN? I will look through your videos for the information too. ALTHOUGH: I'm been "sick" for 22+ years. I was directed to an interview with a Doctor of Chiropractic, Dr Perrin and his theory and he has now put into place The Perrin Therapy. I haven't seen the videos yet but I was wondering if you have or have heard that this is tied into the lymph system?
Hi Susan, LDN stands for Low Dose Naltrexone. I made a video on it, you should check it out. Doesn't work for everyone but it can be very helpful. I've heard about the Perrin protocol, in fact I belong to a FB group about Perrin Therapy. I think you should check the group out. Lots of good info
@@fight4me747 Thank you! I will look for your post on LDN and on FB too. I really appreciate your reply. I'm at my breaking point...losing all hope until the other day when a stranger sent me a link to a Perrin interview and then to you.
I worked and slowly started working less and less until I could no longer do it. In fact , I think that pushing myself so hard to work made my decline happen faster.
Can't speak for others but people with ME/CFS have usually been tested for almost everything in existence before diagnosis. Im confident thats been ruled out for most.
What would you say a crash or PEM feels like for mild cases? What did it feel like for you when you first realized you had something? I'm being tested for POTS, but I can't tell if I have PEM or crashes.
Thanks for your video ! I had ME/CFS since 24 yo after mono infection but it worsened a lot after a work-related stress episodes. I'm 46 yo now. btw, I'd like to contact you via PM, any idea ? Unfortunately LDN didn't work for me.
Exclusionary testing. Also CPET tests and blood work can almost certainly narrow it down along with symptoms. You need a doctor that knows what they are doing.
I had ME IN 1979- 1984 and could barely move, (good days, bad days) My current Doctor says ME is purely imaginary. I said I wish you could have ME for even two weeks and you'd know better.
How did you get well?
I've been living with this illness for a year now. When it first started I was very positive and determined to not let it beat me. I worked out where my boundaries were fairly quickly so I knew what I could do and what was too much and I almost began to feel like my old self. This Christmas though my health took a turn for the worse and I was knocked back to square one, only this time I didn't have any positivity or determination left.
All of the things you said in this video, I already knew. But somehow, hearing it from someone else who knows what it's like to live with this made it so much more real and important. Thank you for reminding me that giving up is not an option.
Annabelle, have you heard of LDN? Low Dose Naltrexone. I think I may make a video about it because I believe to be the most important treatment for ME at the moment. Please look into it, if you have not heard of it. Hope you are feeling well today.
Your videos are the best I've seen on YT!!! Thank you so much for your insight. You define our challenges so very well. I am finally able to understand the illness I've struggled with for over 20 years!! I'm 64 now. SO GRATEFUL TO YOU, Johnny. (I think that is your name). God bless you and be with you.
Thank you Elaine! Im glad the videos can help in anyway. I hope you're feeling well.
Johnny what you are doing (did?) with the videos is incredible for us. Thank you. JD
Thanks, im glad its helpful.
Thanks for starting this channel. You bring us a lot of hope.
Thanks for the reply. Comments like these motivate me to make more videos even when im not feeling well. =)
Amazing!!! Thank you for sharing. It’s nice to know we are not alone.
that was so good.... thank u.
Thank you for making this video. I was diagnosed around the time that you posted this, but I didn't find it until now. For some odd reason it didn't occur to me to look through youtube to find some way to relate to other people that suffer with this. And it was odd to listen and hear some one else talking about this. Apart from the one helpful doctor I found. And it helped. I feel a little more optimistic about this now. I have been struggling with this illness for about 15+ years, and I've only been met with disbelief and sceptisism. My friends, family... anyone, questioned me and in the end I thought I was going insane. Blood tests were fine, no real indication as to what was wrong apart from me being really sick. I was told it was all in my head, that I was lazy, that I was being a hypocondriac and I was sent to goodness knows how many psychologists because... it had to be mental if they couldn't see anything physical. Then finally (after so many years) I was sent to a proper doctor, I got the diagnosis. And the first thought in my mind was to call everyone that had made me feel horrible about this and tell them "IT WASN'T ALL IN MY HEAD! F**K YOU!" of course I didn't do that. I try to stay positive most of the time, as hard as that can be. But finding your video, listening to your tips and so on has given me new hope that I might feel better some day. This has been a long and not so eloquent rant... But I needed to get this out and tell you how much I appreciated this video. Thank you.
I can relate all too well with your experience. The same thing happened to me. I was lucky to have an understanding family that helped a lot. Hang in there, learn as much as possible about ME and you will hopefully find some relief. If you're on facebook I highly recommend joining a group called "myalgic encephalomyelitis global" . Tons of great people with a lot of knowledge. Also check out 2 other videos I made. One is about LDN (helpful drug for people with ME that many don't know about) and the other is 5 quick and basic ways to feel better. I think those things will hopefully put you on the path to start feeling better. Best wishes
Im the same, sometimes i feel like shouting F..K YOU, whoever doesnt believe or try to understand my daily hell. ☹️ Ignorant insensitive people.
You're not alone. The first time cfs grabbed hold of me was nearly thirty years ago. I managed to get on for twelve years. Then having had some surgery set it off again. And the deterioration is accelerating rapidly now. I have been unable to work for five years now. All the time I described the symptoms and being a veterinarian myself knew what was wrong but no one believed me! Through YT I found out about all the new research, about Ehlers-Danlos-Syndrom, which I definitely have as well and I just want to scream at everyone who ignored, tormented and tortured me during all this time.
@@fight4me747 thank you for the information about LDN. I looked it up and it really makes sense to me. I tried Tramadol and it worked but the physical addiction was not nice and doctors and people treated me like a junkie. I have one doctor who believed me, he just didn't know how to help. I will ask him to work the LDN therapy out with me. Don't know if you can use it in Germany.
Thank you for your videos. I will use them in the future to show people what my life feels like. I couldn't say it any better.
@@hummeldumm6072 I hope your doc works with you and that you find some relief.
Where were you 5 years ago!? :) Your recommendations mimic my experience perfectly. I couldn't have said this any better to myself five years ago when I was diagnosed than you did here in this video. LDN is the #1 thing that has helped me too. Not a magic bullet, but it is a significant aid no doubt. Tried to stop taking it, and/or ran out, a dozen times and every time it has been a reminder how much it helps. Looking forward to more videos!
Right on Chris, glad that LDN has helped you!
Fantastic video. Very informative, succinct and great messages. Thank you.
Thanks! Best wishes
Thank you for this encouraging video. I'm going on year 7 of suffering from this, and I still fight to feel better. I'm going to go-to tge doctor to get the LDN.
Excellent Truth. Well Done Sir!
Thank you!
Thank You 🙏😰xx💜
Thank you so much for your informative and encouraging videos!! Wish I could have seen this video at beginning of m.e.!! Take care and God bless to you and family who understands!! You're a lifeline to people!! Jx 🙂👍🙋♀️
you're so great. i'm really glad i found your videos!
I believe people with this are on the average more intelligent. What do you think?
Everytime I hear sleep right I want to jump of a roof. My body is the one that doesn't seem to want rest. Lol.
Same here, I know your pain. Its terrible. This illness demands good sleep but we can't get it. Horrible cycle.
Exactly. A typical night for me- Finally fell asleep around midnight, woke up two thirty. Maybe after midnight.. stayed up a little, woke up at 5.30.. stayed up a little was woken up at 6:55 by my dad screaming. It is 7:16AM. Decided to just get up and opt for a light coffee.
Thank you so much for all this advice. I became sick in november 2021 with covid when i was 19 and ever since then ive been dealing with fatigue. I started doing more research on what i currently could be having and i seem to have 95% of all the cfs symptoms, so having tou tell all this information is really helpful, thx.
Hope you feel better soon and find some answers!
Such good advice...your amazing.
What is your status like at the moment? Are you housebound? I don't have ME/CFS, what does it feel like to have? I understand that some people say it feels like your legs weigh a ton, are your eye's always heavy? I hope you get better soon.
My symptoms were mild when I was in my early 20s so I didn't really look after myself at all that much. After two children & now I'm in my 30s my symptoms are way more in the moderate category :(
Just curious are you able to work full time for the last year I've been struggling to work lost my job that I had for over 14 years had them physically not able to do much of anything anymore just curious on what you do are you able to get disability or find a job that meets your needs?
❤❤❤
Sorry guy, 24 years here. Still no treatment, cure or answers. The up side? You're gonna get tough.
Yep. Im 15 years with this. I was tough before it so I can handle it.
Keep the beard! 😀
Does anyone else get super hot n sweaty after eating & have like no taste, like your tastebuds are effected?
Don’t suppose there is a link to a list of CFS knowledgeable doctors somewhere? My docs confirm I have have an autoimmune condition but oddly after almost a year have yet to narrow down to which specific condition, meanwhile the pain, fatigue, and brain fog is near constant to the point where I can barely do anything significant any given day. Everything I read and watch about CFS describes my situation eerily perfectly but no one has heard of it or seem unwilling to acknowledge CFS.
I think the best way is to check with MEaction.net or FB ME support groups.
What is LDN? I will look through your videos for the information too.
ALTHOUGH:
I'm been "sick" for 22+ years. I was directed to an interview with a Doctor of Chiropractic, Dr Perrin and his theory and he has now put into place The Perrin Therapy.
I haven't seen the videos yet but I was wondering if you have or have heard that this is tied into the lymph system?
Hi Susan, LDN stands for Low Dose Naltrexone. I made a video on it, you should check it out. Doesn't work for everyone but it can be very helpful. I've heard about the Perrin protocol, in fact I belong to a FB group about Perrin Therapy. I think you should check the group out. Lots of good info
@@fight4me747 Thank you! I will look for your post on LDN and on FB too.
I really appreciate your reply. I'm at my breaking point...losing all hope until the other day when a stranger sent me a link to a Perrin interview and then to you.
Did you work while you had it? It's impossible for me
I worked and slowly started working less and less until I could no longer do it. In fact , I think that pushing myself so hard to work made my decline happen faster.
@@fight4me747 same 😓
I have a certain fear of eating a meal. People with cfs also feel "bad" after it?
digestive issue are very common with ME/CFS
Test yourselves thoroughly for Anemia!
Can't speak for others but people with ME/CFS have usually been tested for almost everything in existence before diagnosis. Im confident thats been ruled out for most.
What would you say a crash or PEM feels like for mild cases? What did it feel like for you when you first realized you had something? I'm being tested for POTS, but I can't tell if I have PEM or crashes.
PEM for me when I had mild ME felt like a mild flare up of all my symptoms. Swollen glands, brain fog, fatigue, unrefreshed sleep, muscle pain etc.
Thanks for your video ! I had ME/CFS since 24 yo after mono infection but it worsened a lot after a work-related stress episodes. I'm 46 yo now. btw, I'd like to contact you via PM, any idea ? Unfortunately LDN didn't work for me.
You can DM me on twitter if you'd like
@@fight4me747 cant' do that...maybe you have to follow me too ?
How do you know it is an autoimmune disease ?
Exclusionary testing. Also CPET tests and blood work can almost certainly narrow it down along with symptoms. You need a doctor that knows what they are doing.
We usually have other autoimmune diseases also.
What's the name of the drug??
Low dose Naltrexone. AKA LDN
what on earth is M E ?
Do you still have Brain fog?
Have you heard about lisdexanfetamine?
Yes I do.
@@bismutlife1584 I haven't, I will look into it.