ME/CFS: In this video I attempt to explain what it's like to live with one of the most common ME/CFS symptoms. FATIGUE. Its not a easy symptom to explain but its one that needs to be talked about in depth more.
Physically, it's as if your body is a magnet and the floor is metal; it's so difficult to get out of bed, walk up the stairs or simply walk because it feels as if something is pulling you back. The muscle aches, joint pain and fatigue is comparable to recovering from a marathon; imagine waking up everyday feeling as you ran a marathon the day before. Cognitively, it's like someone is waking you in the middle of the night and giving you an exam; imagine being that confused all day long. Emotionally, imagine explaining to a wall that you aren't well and that you know something is wrong, that's how it is trying to explain this invisible illness to some medical professionals and to the people who disregard your symptoms because you don't have one of the more "sexier" illnesses. As someone who used to suffer from this disease I have a hard time using the word tired or fatigued. Yeah, we all get tired and fatigued at times, but you done get it until you've had an entire disease that resolves around fatigue. Keep educating people! ps: sorry for the grammar mistakes but I really wanted to get that out lol
I greatly appreciate your videos. I’ve had ME since the 1980’s. During the past 35+ years I’ve had zero medical support. I have gone through several long term periods ( months to years) of debilitation when I could barely function due to extreme exhaustion and cognitive impairment. There have been periods of improvement during which I used all my energy and relapsed for another long stretch. For me, being a very driven, self motivating person, ME means every move and thought takes conscious effort. Nothing is done that does not noticeably drain my energy reserve. I can feel it as if someone has pulled a plug and the energy is draining out as I move. Often the “ tank” is empty mid activity... making breakfast, walking to my car, hanging up a towel, or talking. Suddenly I am completely depleted. Others have seen this on my face when it happens. My expression goes flat and I look dazed. I have lost much of my creative energy which is a great grief to me. My brain does not do sequential thinking well anymore. I feel stupid much of the time tho I’ve always had a quick mind. I experience mild to severe vertigo which can appear without warning. I feel light headed, spacey, dizzy, confused. This limits my driving and sometimes my walking, doing self care basics like showering and cooking. The most frustrating aspect of this disease is the skepticism from others. On our “ good days” we eagerly embrace life as fully as possible. Then we often crash. What people generally see is us on those rare good days and judge us only by what they observe at those times. They are not around to witness the debilitation and prolonged suffering that follows. So the assumption is that we are not really sick at all but merely have a mental disorder or a character weakness/flaw. It can be a very lonely place, to say the least. .
Wow thank you I've been sick probably since childhood yet the world crumbled 16 years ago I was 44. Can I just say yes to everything you said! I've lost everything family career friends health you name it. Honestly was purusing Right to Die issues today after yet another month plus alone in bed. My quality of life is a zero. And no one told me that this would become a progressive illness either. Thank you so much for sharing your story it has so helped and if you know of any support groups please let me know...Merry Christmas!🙋🎄
It really p****** me off, the amount of people that say, it's in your head, it really isn't!!! All those things you've listed are a real challenge, and people just don't get it. In some ways, it's easier being on my own now, there's no one to judge. I certainly don't judge myself anymore, I do what I can manage to do, and don't feel guilty or depressed about having to lie down throughout the day, (although I'd be lying if I said that when I'm out cold for 5 hours, and wake up when it's gone dark outside, doesn't bother me). Sending you much love and understanding 💪
I do not feel like I actually wake up...it is just moving from sleepy state to fuzzy state. And then I just get up and walk around like a zombie taking support from the walls. I normally eat breakfast and then rest after that for couple of hours on the couch. There is no really stress...
Chronic fatigue makes me feel so sad and alone. I never wake up refreshed, in fact I often wake up more tired than before I went to bed. I'm sick of feeling like a lazy, loser. I'm in bed so frequently, but my brain is still very active. The boredom is awful.. Glad you are making these videos to help ppl like me not feel so alone.
Yes, true, I too have lived with ME/CFS for almost 15 years, the first 'episode' lasting 6 years and being worst. Followed by 5 really good years where I felt great as long as I didn't over exert myself - tai chi and long walks were just fine and my anxiety was gone for those 5 years...but I could never hike uphill, ski, play tennis, or run. As long as I kept a steady and predictable routine for those 5 'recovered' years I lived a happy, quite full and healthy life.... then I made a house move and renovated by hand, moved without help and did some heavy gardening as well as looked after a sick friend for many months... now I'm back in a big relapse for the past 1.5 years. How to describe the fatigue as you say in the video: indeed it is hard to describe. I would say it's like the engine doesn't start in the morning.. its like those first 5 minutes of waking that healthy people feel as the adrenal glands kicking in functions differently with ME/CFS persons... like the system just doesn't kick in. It does feel like a nasty flu but for me, not the aches and pains but certainly the head fog, fatigue and heaviness and anxiety that we can also feel with flus.
You mentioned how normal people just don't understand, but you don't hate them for that. I commend you for that. I can't get there yet. I hate them. I'm so fed up with being treated like I'm just stupid and lazy. Other men, especially if they're older, seem to be the absolute worst to deal with.
It has taken me a lot of time to be at peace with it haha. Yes the older generations seem to be the least understanding. They only believe what they can "see".
Hi a couple of years ago, after a long spell of depression, I suffered with (i think) fibromyalgia - I woke up one night with all my bones sort of aching (I'd been dreaming that I was dying of bone cancer omg), pain in my shins like I'd pulled all the muscles, my feet & ankles felt like I'd twisted them making walking painful, my buttocks ached, wrists & elbows & neck hurt, I had a slight sore throat - now these systems didn't manifest all at the same time but wandered around my body at will - I could be walking just fine when suddenly a pain in my ankle would make me almost fall in the street... but the permanent sympton was lack of will to carry on, altho this was MUCH less severe than when I was depressed; on trying to describe how I felt to family & friends I was literally told to shut up - luckily my (female) doctor, whose good friend also suffered with fibro, told me "it's NOT an imaginary illness but there's no cure - you must cut Negative People out of ur life" - well, physically I pretended that the pain wasn't there... I live alone and don't work (how do you manage?!) so basically I had to just "get on with it" & praps it was just as well... as with depression healing comes from the person herself... from the mind - I stopped worrying uselessly so much about other people, & I made myself relax and enjoy things that I wanted to do without fretting about what others think... Sometimes I still find myself thinking black thoughts and that familiar leg pain starts up but I get up, listen to music/eat something tasty/look at RU-vid/call a friend to organize lunch together - in other words FORGET IT ~ Best Wishes to All from Italy
You describe all my symptoms perfectly. I have yet to be diagnosed. I've been shy and quiet my whole life, never had much energy. I had anorexia for most of my young adult life and suffered with fatigue, but was still able to function: to exercise, to go shopping, cook for my kids. Not like now where going for a walk feels like I have altitude sickness. Now I have to choose between having a shower and cooking myself a meal. Between eating a meal and going out. Putting washing in the machine leaves me out of breath. I can't even drink water. Unless I add salt and electrolytes, it leaves me drained. It's like everything in my body is broken. Update: Yep it's m.e/CFS. My GP practise has decided to lump that plus other illnesses fibromyalgia, chronic pain syndrome, that-long-viral illness and overtraining syndrome all into one catagory. After all, they're all treated in the same way with pacing, councilling aaaand... that's about it.
Yes I totally agree. For me it can be like a very heavy blanket over my brain that has a knock-on effect throughout the body, even when I don't actually feel tired but quite wide awake on adrenaline. Bizarre! In recent years the visual- cognitive symptoms have been far worse so that Reading or using a screen and even driving can have a massive impact at even 30 minutes a day. It's like having invisible chains with very limited parameters in everything. Peace brother
The physical and mental symptoms are hard to deal with, but being believed, understood, people's opinions, that can be even more difficult to deal with. It can be quite a frustrating and isolating illness. I'm on my own now, so, I just try to manage it, in my own little quiet way, I'm figuring out what I'm capable of, or not, and doing the best I can to try and have some sort of quality of life. I'm starting to do a few more things now, because I'll take the physical toll, for a bit of mental "uplifting". I'll go for a day out, knowing there will be challenges throughout the day, and pay for it physically, big time, the following days, HOWEVER, what getting out and doing something nice does for my head, the benefits for my head, to experience something joyful, pleasurable, is priceless, and it gives you something positive to think about, dream about, look at photos of, instead of being buried in the depths of your limitations. Really good video, thankyou for posting, it's nice to be in the "realm" of the believers. Anyone, feel free to ask question, I think it's important to have a community, and thank you to the author of this video, for helping grow that community and sharing knowledge and experience.
Thanks for the videos. I just want to add that mild/moderate CFS is also CFS, but it tends to get talked about less, which might make people who do have CFS not get diagnosed properly. The descriptions of really terrible fatigue are what I experience only in a really bad crash. During an ordinary crash it feels more like a hangover, and if I haven't over-exerted recently I don't feel any symptoms. That threshold is pretty low, so it does mean that I have to keep my activity level pretty low especially physically. But I do think there are a lot of people out there who experience these symptoms as reactions to over-exertion and not necessarily constant, and the symptoms go away with good pacing. For a long time my CFS was so mild that I could even run, travel, etc, but I still had the same type of crashes past a certain threshold of exertion. It's still ME/CFS in that situation and the basic lifestyle changes need are still the same, and it can still get much worse if you push through crashes.
In my experience I started like you and pacing worked no one explained how progressive this disease is after 16 years and doing everything known to man both holistic and medicinal I would enjoy every moment...
Thank you. I suffer cognitive issues which can make it really hard to articulate myself, especially with explaining me/cfs. While another persons experience will never be fully like your own, it’s invaluable to have resources like this.
Just wanted to say a Big "THANK YOU" for this and the other videos I've seen!! Much appreciated!! Keep doing what you're doing!! God bless you and your family!! Jx 🙂👍🙋♀️
Hi. I just came across ur video. I don't know if u will see this post or not considering u posted 3 years ago. However I just want to say.....thank you. Everything u spoke about with ME/CFS is exactly what I am suffering daily, hourly and by the minute. I am going to TRY AGAIN to see a GP. Thank you so much. I feel like I am screeming these physical restraints to a brick wall. Many many thanks for your video. I really do wish u well in ur managing this fatigue because it is horendous. xx
Yes I walked downstairs to get a package that came. I noticed my heart rate was around 150 and I was really tired then I fell asleep for an hour and a half. Finally last time I went to my doctor he noticed my pulse was high I said yeah and I got the closest parking spot I’ve ever gotten. He was saying lots of people are tired right now but luckily after that and another test he never said that anymore.
Ty johnny as always 💙 Yes it's like having the worst flu ever coupled with a hangover. Trying to walk feels like I'm wearing a deep sea diving suit through sticky toffee. My muscles and joints are so sore. Then I get tinnitus on and off, blurred vision, light sensitivity. Cant remember my name half the time, cognitive issues are atrocious and trying to regulate my temperature is like a broken radiator. My feet can be freezing yet my trunk is on fire. I'm severe now and have been bed bound for the last two years. I've gone from moderate to severe over the last 10 years. I send prayers out to you and all my fellow brothers and sister M.E worriors 💜 love from London 🇬🇧🙏
You need to try B-1 by nature's Plus. Five when you wake up eliminates the heavy leg feeling and taking two more every few hours gets you through the day.
@@sepphubert the B-1 by nature's plus are 300 mg each. I take five in the morning right when I wake up and two every three hours or so as needed. I take liposomal vitamin C also is mass quantities. Those are the only two supplements I take plus the healthy diet.
I like the description of having the flu for life. I also say my body is an old cell phone with an old charger that only has 1 bar. I run out of juice quickly and have to plug in the charger (go back to bed) until that one bar is charged again. I shower - I lay down. Brush my teeth , dry my hair - lay back down. Sometimes I lose days at a time.
@@fight4me747 Johnny have you followed the Bateman Horne Center at all. All ME/CFS. Zoom supports meetings, vids etc. So far your stuff is the most on point tho. (Thank you)
Great analogy, that is very much the case, simple small tasks that could previously done without any thought process, are now very much in your face. Literally just about any task is followed by having to sit down, lie down, feel like puking, or burning up. Sending you much love and understanding 💪
Hello. I have had ME/CFS since 2018. The first year was horrible, I was nearly bedridden. I have been watching your videos for the entire time...and researching on how to help deal with this new illness...in January of 2019 I started getting high doses of IV vitamin C. Then I stumbled on an article about vitamin B-1 (thiamine). I use the brand Nature's plus. I now take 5 B-1 when I wake up and I take an extreme amount of liposomal vitamin C. I probably take 4-6 of the liposomal vit C every few hours plus I eat a clean diet now. These two supplements in high doses brought me out of a deep dark hole and back to an almost normal existence. I will always live with some pain and fatigue and can never exercise (workout or play sports) ever again (besides walking). I am able to be a teacher and a pastors wife as long as I take those supplements throughout the day. If I stop taking them, even for one day I feel heavy and numb again, and my legs feel like they weigh 1,000 lbs. I also get headaches and TMJ without the supplements. Anyhow, just wanted to pass along the info. I couldn't believe what a major difference the B-1 made! I try to tell everyone I meet that have autoimmune conditions. Praying for all of you who are going through ME/CFS! I will try to post the article that I read about Thiamine for Fibromyalgia etc. soon.
I have fibromyalgia which is similar to ME. It is like my body is heavy, even on good days. And even on my good days, I feel low in energy and in physical pain - I only can do gentle exercises and mental activities for a few hours. But on my bad days, which is often, I'm housebound. I've tried everything and nothing has worked for me. But there are a few ppl who do recover. So everyone is different.
Great description. I also have fibromyalgia so many times I'm confused as to whether I have ME/CFS or fibro symptoms. I think the one symptom that I know for sure is ME/CFS is the flu-like symptoms. The lymph nodes feel swollen around my throat and it feels like a sore throat. The overwhelming fatigue could be either ME/CFS or fibro but it feels like I'm trying to walk underwater. When I walk I feel as if all the muscles in my body is tightening and cramping. I also get pain under the soles of my feet so I feel as if I'm walking on pins and needles or hot coals. You're also right about pushing through the fatigue. I work full time in a hectic environment so I've been pushing through the fatigue for the past 3 weeks and I end up crashing every weekend and being in pain all the time. Can you do a video on how to tell the difference between the two conditions?
Hello I spoke to a specialist and the difference is what came first if it’s fatigue and exhaustion it’s me/CFS if it’s aches and pains in your body it’s fibromyalgia hope this helps but both are very similar 👍
Stop pushing yourself! Sorry, but truly consider it. This is a progressive disease if not taken easy. It means that after one of your weeks you might not recover again. So please, take care of yourself. If you have cfs/me make a plan how to break out of busy work life. Your body is not the same than others and the regret if you end up bedridden can be huge. I mean, you can be f*cked for next 10 years. Make a plan to reduce your working hours to minimum and follow it. (I know it is the most difficult thing ever! But that pushing is so dangerous!)
The way I describe it is waking up with a flat battery and and the alternator is not charging it through out the day I’m tired all day have dizzy spells heavy tired eyes and just feel wiped out 👍
These comments are so true, this is me for over 20 years. People just don't get it, even the doctors. It is so debilitating. I wouldn't wish this on my worst enemy.
Thanks for the video. I’ve had Muscle weakness so bad that I had to have my daughter help me hold my newborn grandson for the first time and I was sitting down. He was 5 lbs...my muscles feel like a flimsy loose rubber band. It’s hard enough to hold my own body up much less hold something else. The first 2 years of this illness I was bed ridden and on a liquid diet because just chewing and digesting food was too much. I was too weak to chew
@@tracydumka1970 I was checked for it in 2003 and was negative. Do you think I should get tested again? My Great Uncle had Myasthenia Gravis. It hasn’t gotten worse for me. My muscle weakness has gotten better over the years and now has plateaued. My last comment was referring to the first few years of the onset. I just have to be very careful now... I have to honor my limits. I don’t ever want to get that bad again
@@sepphubert All I can think of is I had to stop a lot of movement. I’m still very weak, don’t get me wrong, but not as bad as it used to be. I don’t know what I did or didn’t do. I just know that my life stopped and I had to slowly start living again but to a very minimal extent which basically is just self care and working. How long have you had it?
@@Wildflowerincali thanks for your respond. i have it since 10 month now with a permanent weakness, i thought of a muscle disease but than i found CFS. My whole body feels like filled with cement and my muscles feel like a rubber band. Weighted down like gravity increased. It`s a horrible feeling. I was also tested for myastenia gravis but the test came back negative. thanks for your information, so rest ist the best i think
I was diagnosed with cfs a couple years ago. My primary care doctor diagnosed me. He said he thinks it came from alot of stresses I have had on my body, also I had high antibodies for mono. Which he said can cause it. I do work but sometimes I feel like a Boulder is sitting on my shoulders. My eyes feel like they are being forced shut. I have been having more days where I feel like I can't get up but I push through. I have called out of work because of it.
@@fight4me747 thank you what you said was kind ; I spend a lot of my time really taking care of my body and how I'm effected adds some Quality to my Life🙋
Just leaving my symptoms as the author said. Maybe this will help someone feel less alone :) Flu like symptoms- painful swollen lymph nodes, muscle aches, headache, fatigue that is constant. Skin pain to the point that I cannot hug family and friends. I’m a bit more thankful because my symptoms wax and wane and I can pull through enough to work and have a bit of a social life. But I always need a day or two of rest after an hour of activity.
Completely agree with all of this. My mental health conditions also make it difficult to manage with me/cfs. I suffer from bipolar depression and ocd (pure o) and find that if i have a bad episode come on with my ocd or depression, my me/cfs flares up even more so. Debilitating fatigue has always been my prominent symptom on a daily basis in the last ten years, more so than pain and all of the other symptoms that come with me/cfs. Appreciate all of your videos and the awareness you’re sharing on here.
I want to thank you for your videos - they are excellent!! I am new to your channel and I am so thrilled that I stumbled upon it. You truly describe this disease & our symptoms EXACTLY as they are. Your explanation of brain fog and this on fatigue really describe me! I know it must take a lot of energy to do this for us, and I want you to know how truly appreciated you are. I can show these to my family and friends because not only do you validate what I have tried to tell them, but you explain it all soo much better than I do! Thank you!!
Thank you for this video. I suffered from interstitical cystitis for many years and had bladder replacement surgery 3 years ago. I never got my energy back and eventually realized that I had chronic fatigue. I am now being evaluated for ME/CFS and your list of symptoms almost makes me cry…it’s like a checklist of mye own experiences. Especially the situation of being extremely tired in the morning but then never really waking up. That’s exactly how I feel most days. I am still working full time but I fear that it may not be possible for much longer.
Great video. Been struggling since 2017. Got ME/CFS from 2.5 years of chemotherapy. For some reason, I’m always even worse on days before and during heavy weather (quick change in temperature, storms or lots of rain, wind etc). Is that something you’ve experienced? Not seen much talk of it online. Your videos helps alot! Thank you :) Do you know any good online groups or communities to join? All the best.
I have not heard much about the weather affecting people much, but that doesn't mean its not a symptom. Check out a facebook group called Myalgic Encephalomyelitis Global. Lots of nice people with tons of info.
I just had a thought, along with my fatigue, I’ve had a sore throat for most of my life. I’ve tried to tell doctors about my symptoms so I can get disability because I’ve tried to work and I often get let go and told to see a doctor - but they just say I need antidepressants and work is the cure. In the age of C19 how can I go to work everyday knowing I have a sore throat? I’d love to bring this up with a doctor but I gave up years ago because I lose my temper. I just wanted to rant. Please don’t comment to keep looking for a caring doctor.
I get that screw these insensitive doctors that I have to pay to treat me like I'm a nut job. Are you aware that with the inflammation we have on high drive it effects the frontal lobe of the brain and that causes anxiety and depression. Those are actual symptoms of another physical problem like ME not the other way around. May I suggest what helps me? I never say I have Fibromyalgia or CFS instead I call it Deregulation of my Central Nervous System that effects every organ which is true. That is the nature of Autoimmunity...less stigma and may help with disability🙋🎄
Yep, it is actually worth of getting to the disability. I feel so relax about money now and it helps me feel more happy and healthy. Perhaps through mental health section you could get a social worker. They help with disability applications and get your life in order. Only, again you need to find the right person. Some of them are not good help and others...angels in disguise! Also, any doctor should be highly interested if you tell them that you are let go from work multiple times and advised to go and see a doctor! That is a BIG RED FLAG for them! Or should be!!! You can ask your doctor to call your ex-boss to enquire after your work performance. (Obviously your ex-boss might feel threatened by it so the doctor needs to be smart when he talks to him and states that he is just worried about your long term health and wants to hear more detail how you did in the work life. Not the reasons why you were let go.)
Still trying to work out if long covid and mcefs is the same but if I get a good sleep and I have not done to much the day before I wake up feeling fine....
Im no Doctor but I do know that P.E.M. is not found in many illnesses. So, if that is a prominent symptom, I would do your best to find a ME specialist to run as many tests as possible.
So sad, check out if you have cci aai! My son has cfs and now we checked out, that he has cci aai by a funktional mri after 7 years pain, dizziness, pots .... Greetings from Germany!
For me it’s on and off. Usually I have have it after any effort including a psychological effort. I rather avoid doctors on that because I fear medical gaslighting.
When I went to get my last covid shot ,I was asked ,do you have ,sore muscles, fever or any other symptoms.....I was like ...yeah,but that's normal for me.I think that I have this ,I'll just fall asleep at random and stay asleep for 20+ hours.My legs are burning hot and so sore, so is my back .I'm wobbly and unbalanced,so tired.i spill my food and drink.I get headaches a lot.i struggle with food and bath too.i choke on food or even my spit sometimes. I sometimes wish that I had a wheelchair, but I feel ashamed to think that way.I am not a bit tired,I fall asleep with food in my hand ,because I'll sit up one minute and wake up hours later lying down with the food still in my hand .I went out to an activity center (like an exhibition)with my daughter and another adult last Tuesday and after that we had coffees, now it's Monday and I'm still in so much pain ,I'm exhausted and feverish, and my mind is completely foggy.I'm not doing good and my family doctor is a rectum. I'll complain about her once I find a new doctor.
I m tired of this for many years... unlike u I dont have any family too. being in pain, not having any family, not having much friends because all r married, being in pain again, living alone working,,, so I think my profile is really great for just thinking why I should live really. last night I had a horrible battle with pain until morning .... morning I felt like born again like a tired fatigued baby born ...it doesn't make sense really to live for me.. then I wonder why I m still around too ... oh these conflict in mind hurts
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins. The first consequences were: pain in the neck, fatigue, sore throat, depression, ..... After 3 months without a microwave oven these symptoms disappeared. Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example. If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study! People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation. I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
