What does ME/CFS feel like?

[@AlbaLynxQueen]

Your description of the fatigue is so spot on

[@CricketGirrl]

I described my headaches to people as the level of pain of an ice cream headache, but they are constant.

[@Miss_Distress]

This is eye opening, I have had fibro for about 20 years and I’ve been getting worse and worse brain fog, fatigue and PEM for at least the last couple of years. Diagnosed with trigeminal neuralgia and migraine as well and the most recent surprise, random tachycardia for no reason. I am finding it hard to think and get words out, but trying to write things down so I can talk to specialists. Thank you for this.

[@corey-me-cfs]

Hmm- you might want to check out POTs- Postural Orthostatic Tachycardia syndrome. It's a common co-morbidity with ME/CFS. Sadly o is fibro. You might want to look at the symptoms section of cfs-me-navigator.com and see how much is familiar. New migraines/headaches are a symptom too.

[@Miss_Distress]

@@corey-me-cfsyeah, there’s a lot to untangle 😂 I’m seeing someone from Emerge Australia in a couple of weeks. Was thoroughly checked by cardiologists who didn’t suggest POTS but I will keep it in mind. Thank you!

[@corey-me-cfs]

Luck!@@Miss_Distress

[@Truerealism747]

But how does one no it's fybromyalgia or still CFS I have heds do you? Autism ADHD now diagnosed after 27 years of symptoms​@@corey-me-cfs

[@KidCity1985]

Thank you Mary, 27 years. It's bizarre how it changes. I'm in the process of moving, lmao, hopefully I won't destroy myself.

[@corey-me-cfs]

Wishing you luck with it. Go carefully!

[@barbarateresarhiannonsreal1756]

@@KidCity1985 yikes, I'm doing that now. Hope you had a good move.

[@KidCity1985]

@@barbarateresarhiannonsreal1756 glad I moved but it wore on me.

[@heartofthematterlanguage]

I want to reiterate what you said about how people's experiences differ. My own experience is quite different from yours in many ways. I have little pain, which has its advantages (there's no pain!) and its disadvantages (it's easy to push!). But when in PEM I simply cannot act, because of weakness and slowness.

[@corey-me-cfs]

Absolutely. It is different for everyone!

[@bananaboy4640]

thanks for sharing and explaining

[@corey-me-cfs]

Glad it was helpful!

[@barbarateresarhiannonsreal1756]

With me, it presents as not being consistent. Every day is different, I can't make plans or have friends. It's eating a healthy meal, going to bed early & waking up with flu-like symptoms, a bad cold, a horrible hangover (no drinking involved) & feeling like I'd been hit by a truck. A shower can wipe me out for the day. Brain inflammation, I can feel my brain pressing on the inside of my cranium. A small upset or stress, or overextending myself physically or mentally can lead to a full blown crash. I can hike or go to a concert & be fine or I may have PEM (Post EXERTIONAL Malaise). Fatigue, where you have to stop in your tracks & sit or go to bed. I've worked decades with this. Covid-19 made it worse. LH Covid rendered me disabled. OR, I may be fine for a few weeks. I can push & crash or push & not crash. Weather changes can set it off. Foods, additives etc. I'm moderate to severe now going from bed to the couch. Nature, sunlight & warm weather make it better (for me).

[@corey-me-cfs]

keep in mind PEM can come 48 hours later (or for some people even later). If you push and don't crash later that day or even the next day, but crash 2 or even three days later when you think you've done nothing wrong right before, it may have been that activity you thought you got away with day before. It is a constant up and down and some many variables for all of us- it's always a moving target. But you can get better at learning what will crash you, and if you rest aggressively after activity BEFORE you crash you may avoid the crash.

[@barbarateresarhiannonsreal1756]

@@corey-me-cfs Right, Thank you for that. 6 decades in & I know about PEM & it still catches me off-guard.

[@corey-me-cfs]

@@barbarateresarhiannonsreal1756 it's so hard because its such a moving target. :(

[@mandycoke5013]

Hey, girl! I really enjoyed watching this video, and I think we’re sisters lol!! So We are in a group together, & you recently sent me a link on my post about feeling poisoned. Thanks for this 🙏🏼❣️ I’ve just subscribed to your channel!! X

[@drimhighify]

Hello, 35 years old male here. Thank you very much for your video! I've been doing medical tests for those last 3 to 4 years, and we have the suspicion that I developed either CFS or Fibro. Another alternative, less likely but not discarded yet is MS. Anyways, my cluster of symptoms overlap almost 100% with the ones you explain here. My muscles get drained of energy very rapidly. I have problems chewing, swallowing and even talking because my mouth and throat muscles get tired with extreme ease. This problem is usually more severe when I am already fatigued after a long day. Some days I can work with relative normality, other days I feel as if my neck won't hold up the weight of my head. I have cervical, neck, back, shoulders and joint aches, vascular and tension headaches, chest tension and shortness of breath. Some days I experience extreme fatigue from the get go, other days I get totally tired after one specific activity (usually a simple task without much difficulty). I also suffer from severe brain fog (it varies from day to day though), problems recalling memories, thinking straight, using mental abstraction, etc. I also have problems reading and concentrating: this is very subjective feeling and difficult to explain, but I feel as if I had blurry vision without actually having it when I try to focus on my reading of a book page, and it makes me very anxious and frustrated. To sum it up, it's a wide and diverse array of symptoms, and thankfully they don't strike all at once, but they make life very frustranting as you have to refrain from doing a lot of social activities you used to enjoy.

[@corey-me-cfs]

These are all symptoms consistent with ME/CFS. Have you seen my "Getting a Diagnosis" video? Also many of us have both Fibro and ME/CFS- Fibro is a common co-morbidity for ME/CFS.

[@dshepherd107]

Thank you for sharing your story.

[@masterflips1958]

Thank you for sharing your experiences with ME/CFS. I’m trying to learn more about it and these videos of yours have been eye opening.

[@freakattack69]

The symptoms you describe come from an overactive amygdala and the vegetative nervous system. Stress/fear. And then you go to all kind of doctors and they can't find a thing. You have to figure out what's not right in your life or what holds you back.

[@Truerealism747]

My father has CFS I have CFS fybromyalgia found out I have autism add reason amagdalia sensitive father surely as adhd

[@freakattack69]

@@Truerealism747 interesting. These things are all connected together. It is all about the family constellationnamd how we grew up. Do you live with your father still? And what about the mother? Is she free of symptoms?

[@Truerealism747]

​@@freakattack69lost my mum.lost year to severe ms autism heds my grandfather had it his mother and grandmother

[@Truerealism747]

@@freakattack69 also ADHD autism connection Dr lenz

[@AlbaLynxQueen]

For me it's also body temperature fluctuations, it can range randomly from 35C to 37.3C. Not just "feeling hot or cold." That was one of the symptoms at the onset, together with fevers and complete loss of appetite and nausea 24/7 for months and years. These symptoms are a bit rarer, so I wanted to mention them.

[@corey-me-cfs]

Yep. Thank you for mentioning.

[@TheDetoxCureGuide]

I had extremely bad CFS that just kept getting worse. I found I had an allergy to environmental pollutants. I spent years detoxifying and recovered. I made a video on this. I tried all the other treatments. Nothing worked.

[@corey-me-cfs]

I'm so glad you found what was going on (toxic mold exposure?).

[@TheDetoxCureGuide]

@@corey-me-cfs I believe it was due to mercury which persists in the bodies for decades. This is why the immune system activation is persistent. Lead, cadmium, mercury and many others persist in the body for decades. So if you become allergic to them, you are in trouble. This has shown to be very common in conditions involving fatigue which I demonstrate in my video. Do not give up, I almost did.

[@corey-me-cfs]

@@TheDetoxCureGuide that doesn't explain why people get it right after a virus/traumatic event/accident/surgery, etc.

[@TheDetoxCureGuide]

@@corey-me-cfs These lead to a depletion of glutathione which can be cause a shift in the immune system to a th2 type immune response. This is why various stressors can trigger cfs.

[@irenes6627]

My digestive system is awful. Had scan etc and my bowel, gall bladder etc is fine. I get embarrassed with noises and as you say the constipation. Do you have any tips for a healthy gut supplement. I already take vitamins daily. Vitamin C,D, B, magnesium, Omega 3 and iron. Thank you x

[@corey-me-cfs]

Dr. Chia reccomended Elysium. In the treatments section of cfs-me-navigator.com I go into the details of taking it. He recommends it for those of us who started ME/CFS with a gastro illness and have gastro issues. I took it for over a year and my non-constipation gastro issues went away and stayed away. I no long have to take it.

[@henp99]

I would trade primary Progressive multiple sclerosis with most people but not you God bless

[@corey-me-cfs]

Ug. They can both stuff it. The thing with ME/CFS is that degrading is not guaranteed (and indeed, over the past 5 years I have improved). Most people do get worse over time though. I can only imagine what having an illness where you _know_ you will just keep getting worse is like. Apparently as many as 25% of MS patients qualify for ME as well. :P

[@Truerealism747]

​@@corey-me-cfsdo you have hypomobility lost my mother to severe ms last year both have heds and now no we both had autism and my grandfather my father CFS had got better over decades all my aunt's have fybromyalgia surely ADHD sleep apnea

[@corey-me-cfs]

@@Truerealism747 I do not have hyper mobility- that would be a sigh of EDS. So sorry to hear about your family. :(

[@andybreedlove]

Hi Corey - what were the things that helped you get from your worst - where the nervous system so compromised that anything from light/sound/people/life crashed you/hurt? I’m there 15 months bedridden now.. I can’t seem to get a foothold 😌. I have days where I can push and almost have to as the adrenaline and restlessness get too much, but I always crash, every day regardless, and have got worse over time as I can’t calm myself/nervous system even 1%.. Pacing, I don’t understand in my position because my symptoms keep changing, and sometimes I can crash from going to shower, other times it could be that I have gone out briefly - sometimes I wake up, then just crash soon after.. I’m writing this on a good day, I mostly cannot bear light/tv/sound.. but other days can push through for my sanity and go outside.. thank you.

[@corey-me-cfs]

Low Dose Abilify helped a huge amount. All my meds have, but pacing is the biggest thing. See treatments section cfs-me-navigator.com for what I used. Also- shower? Do you have a shower chair? Standing to shower is a huge effort. Bath or sitting in a shower chair would be my suggestion. Avoid pushing. Try to find outlets you can do in bed. If you do leave bed make sure you have a good place to lay down outside of bed wherever you go to.

[@andybreedlove]

@@corey-me-cfs thanks - I just don’t get how physically I can do more some days, but ultimately it’s down to how much my brain can handle? V little.. as I mentioned, so it’s a cruel state where I can’t think (I feel depersonalised/otherworldly) but sometimes have more physical energy but not grounded, it’s wired/agitated.. so am left comatose by my brain, not my body.. so there is no balance.. no repeatable baseline.. if I stay in bed 24/7 I just get more restless that I’m wasting away in a body that can do more than my racing thoughts and mental paralysis are ‘allowing’.. How do I find a baseline in this state? There is no relief of symptoms if I stay put, rest, or get up and do things? Thanks 🙏🏼

[@corey-me-cfs]

@@andybreedlove The restlessness is part of it- it absolutely sucks. The thing I've found that helps is pacing. I get up and do a 5 minute thing, then lay down and rest and maybe look at something on the computer or if my brain is over-taxed, listen to an audiobook in the dark for 30 mins. Then get up and do a 5 minute thing again. The getting up helps with the restlessness, but the resting between keeps me from crashing.

[@corey-me-cfs]

@@andybreedlove I gave up on a consistent baseline. There are just too many factors, too many kinds of tired/over-worked. I just listen to my body and brain each day and go from there. If I'm doing anything bigger, I plan complete rest right before and after. If I know its going to be a sensory heavy thing, I make sure the rest is in the dark and with minimal screen time (audiobooks are good).

[@dshepherd107]

Hi, I’m a former research biologist. I now have severe ME. Heading into autonomic failure bc I’ve been either undiagnosed or misdiagnosed for over 20 years, ultimately left untreated as a result. I have spent the last 10 years looking for answers. ME is very much like post-viral syndrome. Think of the people who had Covid, known as the “Long Haulers.” It is essentially a type of post viral syndrome. In fact from what I’ve read, there’s not really a distinction between the two. At its core, both are a metabolic problem. Your body isn’t making enough energy for all your organs systems to work. This is bc within your cells, you have these minuscule little biological energy machines called mitochondria. Mitochondria make energy molecules called ATP. They do this through something called oxidative phosphorylation. Suffice it to say, it’s an aerobic oxygen) process. Now, have you ever heard of a thing they talk about runners going through, in which they run out of energy and their bodies starts producing lactic acid? They’re muscles aren’t getting enough oxygen so they start cramping from the lactic acid building up, burning, & ultimately, the muscles give out. It happens bc the runner’s muscles switch to all it has left, an anaerobic process, which it can’t keep up for long, bc it simply doesn’t produce anywhere near the energy needed to keep the human body functioning. The only thing it can do is try to conserve energy for the most vital functions. This is why we get all these seemingly unrelated symptoms.This also causes micro inflammation in parts of the central nervous system, and/or the peripheral nervous system as well. GI issues often are the result of neuromuscular motility disorders. I hope this makes sense of it a bit better. I’m actually about to try nattokinase, bc I’ve heard very good things about it, & there’s no danger in trying it unless you use aspirin or blood thinners. Edit 6/09/24: let me add you should start at a very low dose and check with your pharmacist about medications you’re on to make sure it’s safe, & your doc before you start. I thought I wrote this yesterday, but my brain fog is pretty bad right now. My apologies.

[@corey-me-cfs]

I know all this. I run a resource site called cfs-me-navigator.com. There are links to things explaining most of what you just explained on it. Btw to my knowledge none of the top ME/CFS clinics are using nattokinase. They are all using Low dose Abilify or low dose naltrexone and some other things (see treatments section of the page I listed for links to the research).

[@dshepherd107]

@@corey-me-cfs I’m on LDN. It wakes me up a little but that’s about it. Again, I’m severe, so anyone trying it shouldn’t assume the same outcome as me. Nattokinase is indeed being used to prevent microclots, amongst other symptoms. It’s easy to find if you do some searching. Honestly, it was a difficult thing to use my energy to write all that. I’m so severe I can’t talk, stand, or walk more than a few feet at a time. I’m alone. I lost everything. I accept that. I’m not the only person that’s happened to. I shared all I knew in case I could be of help to someone. I don’t need accolades & I’m not trying to steal your thunder. I listened to several of your videos in fact. If all my research, education, & personal experiences might help someone, that’s enough for me. I can tell I don’t have too much longer if I don’t get a handle on this, so I decided if I find info that could possibly help, I’ll share it. I have no other motivation. I don’t have the energy or ability to run a KZbin channel as an information sight for people with ME/CFS/Long COVID, etc. i think it’s great you’re trying to help. I have a lot of useful knowledge. I spent a lot of time and hard work acquiring it. I can’t actually work anymore, but I’m not wasting it. If I learn something, I’m going to try to get the info out there.

[@corey-me-cfs]

Also so sorry you have joined us in this condition. :(

[@arlenefisher1164]

I could barely hear you, and I really wanted to listen.

[@corey-me-cfs]

It's on the quiet side, and I will try to make sure they are louder in general so the difference with the ads isn't terrible, but for me if I turn up the volume on my computer it can be plenty loud.