Brain fog is the most difficult to explain. I love your channel, thank you! My Dr doesn't believe me when I tell him every single cell in my body hurts.
You really do understand this condition so well, I'm sorry you also go through this awful illness. Your very relatable, thank you for your videos. Take care x
In addition to the extreme fatigue, digestive problems, brain fog, and pain ... my nearly daily invisible symptoms also include tinnitus, hyperacusis and head pressure.
@@LindaD02 Head pressure to me feels more like encased in lead that grows heavier by the second, 'pulling' me to lie down. I have to be somewhere near bed or sofa.
Yup the tinnitus vertigo, and hyperaccousis is horrible. It can trigger an attack of panic and the fatigue so bad I have to immediately stop what I'm doing and lay down wherever and when ever it happens. 😢
When you said swollen glands... I said YES!! They're always swollen but get huge and hurt so bad. I look like I have half of an egg sticking out my neck. The symptoms are endless and all individually a pain but all together day in day out its a challenging illness. Thank you so much for covering this. Lots of love from London 🇬🇧💜🥰
I'm nearly 7 years into it now. Please don't give up. I went on holiday for 11 days for the first in 8 years. I had a great time and functioned really well and didn't get p.E.m. it got bad again when I got home but I know I'm getting there. I remember the swollen glands. I did everything. I mean everything to build my immune system. Took years to heal my gut and 24/7 symptoms. I am doing brain retraining visualizing myself driving and being symptom free. Please never give up. You will improve and get better
I get all of those. Also chest pain, especially when doing a chore like doing the dishes. Also upper back/shoulder pain. And I seem to be in a hyper alert response often. Difficult to relax. Thanks for spreading awareness.
I’d like to spread some awareness about mold toxicity and ME/CFS. I highly recommend everyone with a mysterious illness, but especially those with ME, to get a doctor to do a mold panel blood test. This has been a big part of my diagnosis. I also have the high EBV, but my doctor thinks the EBV is being exacerbated by the mold. And wow it is difficult to get rid of but finally making some progress.
Yes to back pain when doing dishes. So odd. Pain hasn't been a major symptom for me, but lately (6 years in) it's getting more and more noticeable. Ugh.
Yes, chest pain! I get crushing chest pressure and air hunger whenever I do any kind of activity, but improves whenever I totally rest. I don't see this often mentioned in ME/CFS symptom lists, but it's my most prevalent symptom besides fatigue.
Headache. I have Hemicrania Continua which means it’s there all the time. It can be milder some days but also intense others. Heart palpitations out of the blue, especially when first lying down for the night. And PEM, just from walking from one room to another. Tinnitus. After I shower, I shake for 10 minutes. Nothing can describe these so a non-ME/CFS person can get it. But all of us know ❤
Thank you for making these, for me very relatable but also easy to understand videos!! Great for sharing and explaining myself better, but also that there is finally more content and info online on what ME/cfs really is about, besides a list of symptoms that are either very vague or so simple and common probably most people can relate, except how big the impact is if you're living with them every day for years on end.. I applaud you for getting behind that camera and spreading awareness!! Also wanted to share a little poem/some info I once wrote in trying to spread awareness too "Granted some days End with grace But I'm in conflict Most days Mornings tend to clash Midday i crash At night i lay awake Anyway Granted my face Doesn't give it away But that's the thing With ME " I’m asking you to take a little time to see ME. ME/cfs stands for 'Myalgic Encephalomyelitis' aka chronic fatigue syndrome, and is classified as a neurological disease by the WHO (G93.3). It is a serious, incapacitating, chronic disease that affects multiple body systems, such as the brain, the nervous system and the immune system. Experts do not yet know the exact cause of ME, but many people start feeling symptoms after contracting a viral or other type of infection. This at least resembles a post viral syndrome, like now is seen happening to some ill recovering COVID patients. Symptoms include; generalised chronic pain, impaired muscle function/recovery, cognitive dysfunction, brain fog, sensory processing issues, sleep disturbances, irritable bowel syndrome, extreme fatigue and a host of other fluctuating and unpredictable symptoms. The severity varies, but the symptoms are real. Most patients are not able to take part in society, some patients are completely bed ridden. There is comparatively little interest in ME, and little capacity and funding being targeted on ME. As a consequence there is limited understanding of the mechanisms behind it and no effective treatment. Although ME is officially recognised as an illness, patients are often confronted with a lot of misunderstanding and denial from society as well as the medical word. No wonder ME still wears it's saddening nickname: ‘the invisible illness’.
Nausea, complete loss of appetite, low grade fever, muscle weakness in legs, arms or jaw, feeling of being wired and restless, inability to concentrate or do simple cognitive tasks.
Swollen tonsils, hurts to swallow, not caused by infection or virus, they just swell up, always follows PEM and often symbolises the dreaded looming crash. But frequently have swollen glands in the groun and armpits which gives you a sickly feeling. I've had some success with omega 369 supplements. I always groan at people recommending supplements but 7 months on omega 369 has given me clarity, sharper memory and way less fuzziness. I was on omega 3 for 18 months and it did nothing but after 3 months on 369 I noticed improvements and big improvements after 5 months. Unfortunately, it hasn't helped any other symptoms, but for brain fog, it's been successful and I've had ME for 27 years.
Hi. You forgot this one, Feeling so severely I'll that you feel like your DYING. I tried to get palliative care but because I don't have a terminal illness I could not get it. And this really sucks for people that are really bad off such as myself. I am bed bound and because I don't have cancer or ALS or COPD I can't get the help I need. When it comes to CFS you're lucky if your doctor even acknowledges how it can make you feel. I wish I had the energy because I would be an activist trying to get recognition of this disease so people could get hospice care if they need it or palliative care if they need it but no I can't get any care like that. Take care of everybody.
@@vickipurton933 hi Vicki, I just want you to know that I totally understand what you are saying. And I feel for you from the depths of my heart. It's like being so sick so utterly horrific and you just feel like you're going to die or you are dying and this is what it feels like to be almost dead. I'm so sorry that you have to deal with this. What are you doing so you stay alive? Or are you ready to go? would you ever take your life because you're in so much pain and agony? That's a hard question I realize that. Thank you for replying again I appreciate it.❤️
@kavitadeva Yes! Exactly! Well said. I could do so much more with just a little assistance. We don't even have the energy to advocate for our cause. It's not only our symptoms that appear invisible... It's US! 😭😭😭
I have found keeping daily journals listing my symptoms and activities. Good and bad days. And tracking my hr as well in those logs. I can see patterns indicating a crash sometimes. Insomnia after over stimulation of my brain is one of them I skip flare and straight to crash. I am in a 3 weeks flare of insomnia and muscle aches and brain heaviness now after looking at Christmas lights so I am just waiting on the crash. Hoping it’s soon. I would like to sleep at night again
Severe headaches usually for about 3 days/nights at a time + nausea , weakness in arms/legs as if you've been lifting weights for too long (I imagine haha), dizziness/balance issues, one single arm or leg suddenly hurting as if it's about to fall off, ... To name a few 😅 y'all know how it is.
Personally I feel that FATIGUE is a wrong description of the condition. For me it feels like chills running up and down from my head to my feet and all the energy has been drained out of my muscles. I usually get 9 to 10 hours sleep per night but when I wake up in the morning, I feel like I’ve never slept a wink. Also, I attribute this to my brain fog because I have no energy.
Have been told stop being lazy, other people have it worse, its just depression, snap out of it, usesless, worthless, good for nothing, you are making it up it isnt that bad and so on.😢
How about the lovely symptom of insomnia that a host of sleeping pills does not help in the least. What a rotten of a disease: extreme exhaustion that we have to explain along with an inability to sleep. Terrible.
I can't hear this - I can't turn my speakers up high enough to hear it, even with a booster. I have good hearing. Not sure why it's so quiet on pc. Had to literally download an add on sound booster and kick it up to 290% to hear it. RE-upload or something?
Can you do one about the insomnia ? I’m going on 3 weeks after going and looking at Christmas lights in pigeon forge. 3 nights without sleeping at all and still insomnia until 3 am.
Ok . No such thing as CFS. Should not be referred to at all. M.E is a specific organic illness defined....it's definition is in the medical name.....that's why it is called what it is. It's origin is arguable but both avenues lead to a man made cause. Now the next thing. Defining what you have medically has been possible since the early 1980s. Those flags.....can still be used. But they are not used. The base problem starts with the wrong WHO definition. Therefore everyone whether they think it or not are considered to have a mental health issue...which is of course as ignorant as the wrong definition and just about every medical practitioner out there. I will be doing an entire video on all the nonesense relating to this and the nonesense of charities who suggest they are working for a cure. Again there are medical solutions ....Any good immune specialist should know that. The clues are in the diagnostic flags. As I say been around since 84.. All the symptoms of M.E are related directly to an auto immune illness....whose centre is the brain and central nervous system vasculitis. So there we are some actual medical definable realities. The Absymal WHO definitions and there have been bucket loads....all wrong apart from when the initial organic diagnosis was made. And accepted then refuted later on for complications with the man made origins....and fallout that would ensure. Ok now let's unravel the confusion. Thus you have a viral inflammatory illness in the hyperthalamus......By the way no charity or other organisation seem remotely aware of the facts.....including origin. Thus they do not put the obvious together. Now There are shared symptoms. They will be shared by everyone with this illness. Because they are a result of an auto immune illness. An auto immune illness is where the body is busy fighting itself. So all auto immunes share these symptoms.......thus in the initial sense it's possible to have an auto immune illness that isn't .m.e. Only by further enquiry can that be made absolutely clear. So the main shared symptoms are ...1. Constant b cell response to infection..... Result ......oxidative stress. Caused from a pile of scrum like defence cells piling up to destroy the pathogen....( The virus). They collate and restrict blood flow....causing inflammation....which then prevents oxygen in your blood from passing from the blood cells to the body. Ok .....next the inability for this function then causes the wrong gases to build up in the blood , these are exhaust gasses from the action of defence. Instead of being carbon dioxide they are nitrogen . Thus poisoning the blood. That's the cause of so called foggy thinking because you are in a car with exhaust gasses being pumped in....same idea..that's why you trouble to think.....simples. Right Next . The lack of oxygen and the poisoning gasses mean your body cannot function at the mitochondrial level. Thus nor can your body make enough glucose. So you have very limited oxygen .......and very little glucose. Thus tired..which of course is an extreme understatement. As this occurs 24/7. You in reality do not sleep, that's why what you think of as sleep does not function as sleep. You pass out thru physical exhaustion. When you awake you have not slept......now you starting to get it aren't you . See this shit everyone should know period. Just how thick professionals are is beyond me. If your blood is tested for oxygen it's likely to slightly above the norm........that doesn't sound right does it.....but again ......the oxygen is in your blood .....great.....but it can't fecking be transferred....not so great is it......A deep and common misunderstanding. Some one commented that you feel like you dying...absolutely correct. Absolutely. No one gets the severity of this illness because some simpleton in the WHO can't tell you the truth.....thou these days that's probably their ignorance . Where there should be none. .Now the next fundamentally stupid as you like half baked thing you get told which is horse shit in horse shit where a horse is having a shit. That is this.......pacing.....yeah the horse is pacing . This is by far the worst advice freely given . Because it's simple isn't it. You are in extreme oxidative stress..thus you are in exactly the same boat...well not a boat ....but you will see what I mean as a climber on Everest on the last 800metres of Everest....and they have an oxygen tank ......you do not. So do as much bugger all as it is possible. Never ever push. Because they will weaken your immune and over time as many will now ..know.embed the illness.. ..The mountain climber has less air pressure pushing on his blood circulation and oxygen exchange. So that's why it gets worse the higher they go. You are at that point where you need Oxygen ....but unlike the mountain climber it will serve you no purpose .....because those constant defence cells are blocking ....remember. There are more base symptoms like the thyroidal impacts etc. But here's the thing you need....to understand. Now remember this if nothing else. The viral impact is in the Hypothalamus . That the CPU of the brain.....Got it....that controls the bodies functioning. So with that being the case it sends out wonky donkey info to you various control systems ...organs etc. Now the effect of that in you .......will be different to just about everyone else..this is the bit that confuses folk. Because it's not a subjective sharing scheme you can discuss with one another to make sense of your illness. Your hypothalamus history of health and points of infection within the ..hypothalamus. Are unique to you. So don't do the subjective bullshit pointless course of asking someone else if they get this that and the other..... That's subjective ....and has no sense in this illness. Because it's like comparing you feet ....or you granny. It's useless. Don not get confused ...you are confused enough . Then you get shit advice a plenty folk that think they have had it for a bit and got better on carrots . That's also stupid. The illness can be cured. It's not a mystery .....thou no one gets funding for something solveable which is why the Charities just waste everyone's time money and insults the sufferers. As they know this simple fact....They cannot treat you until this wastebasket Who definition is altered.. And how many have given you even the basic info.. I will tell you none....Anyway. never push ....never take notice of the I'll informed and the medically inept. It's not impossible to get better....there are real solutions. But the confusion is caused also by folk who imagine they have it but don't ....because they have no real concept of the real illness...there is the mental health definition thrown at them from an incompetent doc. And in this regard they all are...culpable of bad guess syndrome file 13. Another person with depression etc......which is just pure...shite.
@@Truerealism747 Fibromyalgia pains into absolute insignificance. Compared to m.e .There is nothing on the same severity. The problem being mass misinformatio and bad guess syndrome on the side of gps . For that's exactly what it is a bad guess. Fibromyalgia is nerve ending inflammation . Thus you just need a good anti inflammatory ..thus you could take ginger tea from the root and use ginger oil on point of pain , you can also apply hydrogen peroxide on point of pain . Food grade. . Try a bit first ...It's another example of insufficient oxygen. I would also go for ginko ....and aspirin Ginko has a myriad of blood thinning ....greasing and improvement on blood flow. So they would improve blood supply which would improve oxygen supply.....then I would add Ginseng . Both ginseng and ginko take six weeks to be absorbed....so changes from these would start to kick in after four weeks or so. The advantage of ginseng is that it's an adaptogenic herb. Thus whatever the underlying cause will get balanced out. That is to say if the cause is a increase of a certain function then it will lower that function...if it's the opposite it will heighten it.....bringing homeostatic balance. MaKe sure you have sufficient base metals minerals. Take garlic regular. And add dandelion leaF to soups n salad. You should not take any pain killers. I make the aspirin I use....and au natural is best. With those few items you have cleanses of the bodies Organs and lymphatic system. You can add nettle too. End of a soup, . Hard to say the cause as folk are bathed in cack eat cack and take cack meds. That lot should wipe out most things
@@Truerealism747 No it's absolutely not. M.e has a severity no one gets... Because it's not just about pain which in m.e is everywhere. Trust me there is no comparison at all. You don't get 5 percent of the issues. M.e is worse than horrendous.
@@Knobbynomates I've had all the symptoms over decades but symptoms have changed over time I always have one symptom worse fir 7 years it's muscle pain before that it was stomach acid in my lungs but I do have heds Asperger's add they diagnosed me with neurosthenia in 1998 albeit unknown to me now changed to CFS fybromyalgia
