This video dives into some of the visible symptoms that ME/CFS causes. Often times ME/CFS can be a bit "invisible" but there are symptoms that you and your loved ones may be able to physically see.
I have the same symptoms as you have described (except hair loss). I would add being very quietly spoken, as well as the side of brain fog that disrupts speech (loosing words and trail of thought during conversation, malapropisms, taking longer to process what someone has said to you so taking longer to reply). And like you said, it's all of it going on with sudden onset. I found it reassuring to hear that all of these external symptoms are the M.E. and that there are people who can relate. It's like I need reminding sometimes. Thank you for your upload.
Hi. I have had M.E. since 1997. I couldn't work and this year I got my old age pension. Such a relief not to have to prove that you are Ill to access money. As well as all the symptoms you describe I feel dizzy if I stand and I am always hot (not hormone related). Pacing is the only way . If you go over it can take days or weeks to recover . I spend 80% of the day in bed. I was fortunate to get diagnosed very quickly . I payed privately to get diagnosed so that I could access benefits. G.P.s have varied over the years and they seem to be getting marginally better .
Yes, I’m female and I’ve also experienced muscle loss, puffiness around my eyes and paleness. I have trouble not hunching & tightness -it’s like I don’t have the strength & energy to hold myself upright. And Yes, I adverse reactions (sometimes critical) to almost every medication, ct contrast..... the doctors try to treat me with. Thanks for the videos & thanks for using the soft (not too bright)background color😁.
yes, about the light - !! I've got everything set to dark mode - i just had to check my mail (which isn't ) and cannot se a damn thing - so hop ei type well. ;)
So true about the posture, I feel like my breasts are pulling me forward -I've gained weight because of ME/CFS of course-, my chest muscles get tight, and my back muscles are not strong enough to pull me back up. So uncomfortable.
I’ve gained weight because I don’t do as much as I used to. I don’t talk as much as I used to. I can’t be around people as much either. Thank you for the video. I also have the same issues as you especially the bags under the eyes which I didn’t know were related to Me/CFS.
Can relate to all these symptoms. I'm actually too scared to brush my hair. I used to do intermediate ashtanga yoga, but can't even get into downward dog now. In addition to balance, I've lost all my flexibility and strength, and have become stiff and frail like a geriatric. My posture has been bad all my life, but seemed to worsen in the last few years. I'm seeing a chiro for it, but I have to keep going back. Same with my eyesight. I've always had myopia, but recently started to get double vision. I also get tinnitus. I've had so many tests, but guess what? All normal, except for my cholesterol which is off the chart. Posture and twitching could be related to digestive issues, i.e lack of absorption leading to low cellular calcium and copper. Professor Ron Davis said that whenever he tests the blood of CFS patients, they appear to be in peak health. However at the cellular level everything is abnormal. It is a disease where little things make a huge detriment: staying up too late, eating the wrong thing at the wrong time, getting worked up. We're sensitive to every small stressor, including ones we can't even control, like gravity. I've found Wim Hoff breathing and cold morning swims to be of some help. So far it's the only thing that gives me some energy. I've heard red light therapy can help too, although the lights can be expensive. Instead find a good sunset and try basking in it. As a woman unbalanced hormones and irregular cycle are another worrying sign. My weight is normal, but I have suddenly started holding fat in areas I'd rather not, like my belly instead of my hips. Sometimes I wake up so puffy I look fat. PS. You sound like I did on Sunday. Hope you feel better soon x
I had most of the above except:lost of hair and stomach issues. The most worrying was the lost of balance, but my opinion is that is not related to neurological issues. I would rather say is the lack of strength in the muscles.
As a female with ME I was listening and saying check, check, check, I have all the symptoms you stated. Also, other visible symptoms I suffer from are brain fog, aphasia (loss of words), extremely dry skin, areas of intense itching with no cause, especially during a flare.
I was just diagnosed with this a few days ago and I have every symptom you mentioned. Muscle twitching was worrisome when it started up because it didn’t go away. Unexplained hives all over and flushing and skin rashes. Also shortness of breath has been really difficult for me. It feels like I just can’t fill my lungs with air all the way like I use to and am constantly gasping for air. It will flare sometimes when I’m not even doing anything at all. I also get bags under my eyes and puffiness and look pretty ill. I get heart palpitations a lot and tachycardia. It’s been a wild ride. I didn’t even know what this was until this last week and wondered if the doctor diagnosed me with the right thing but the more I research it the more I realize this really is it. I think the hardest thing about it is not looking sick all the time and people don’t understand how bad it can be or why you can’t do things like they can. They don’t understand if you do, you literally might end up in the hospital. I think it’s confusing to them remembering all you could do and not believing that it’s really possible to be that sick to where you can’t do so many things at all anymore. I tried to work at an assisted living facility last summer and it was a lot of physical labor and I only made it a few weeks and spent the entire summer from may to the end of august in and out of the hospital with so many EKGs and I’m surprised I had blood left in my body after the amount they took 🤣 i couldn’t move from my couch at all. I always try to push myself and end up so sick. I think after last summer I finally learned my lesson and am respecting my body a lot more because it’s exhausting and I didn’t think I was going to make it. Thank you for making these videos! 🙏🏼
I used to be an LPGA golf teaching pro. I could stand all day and give lessons. I could also walk 18 holes of golf with no problem carrying my bag. To attempt to play golf again would be impossible. I also used to go to graduate school. I at least finished a Graduate certificate, but didn't have enough money or focus to finish the Masters degree. Hard to focus on reading. The Plandemic took away all my ministry and donations. So now , I have a hard time making money. But God always supplies my needs. (Philippians 4 19) Let's keep praying and staying close to God . Thank you for all your videos , John. Keep up the good work 😃. Miss Monique 🙂🙏🌷
You are describing me, too. .I have had every symptom mentioned by you and all the people commenting since my teens and I am 75 now. My prayers are with all of you. (and now I'm being tested for Pancreatitis.
it is so frustrating to watch your muscles melt away, the weakness is scary for me . i had Fibromyalgia so i was used to pain - this is another world i'd rather not be in. i panic because my eyesight changes daily - i can't go out in the day time now. Twitching - yup, just try sleeping. Allergic reactions - yup, now i carry an epipen . Bloody hell you have mentioned everything that has changed for me in the last 3 years!
Yup, fat, weak, hair falling out, bad eye sight, lines on my nails. Permanent muscle contraction in 2 spots and occasional spasms. I React to certain foods, meds and supplements too. Not rashes,, more headache,, short of breath, palpitations, occasional stomach.. Talking slow in conversation, or not talking at all because no breathe. Lost half my personality. When you can barely talk, cry or laugh. On and on it goes. Life sucks. I try to find enjoyment where I can. But not easy.
Thank you for this video. I can sadly relate to most of these symptoms too, particularly the sensitivity to medications and vaccines, which is a big problem for my other medical conditions, and looking so tired and exhausted. I also really suffer with twitching sensations in the legs (along with awful crawling pins and needles sensation especially bad at night affecting my sleep). I wonder if anyone else suffers with that? There is a new large research study into ME/CFS about to start being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh which I am hoping to sign up for. It is good that some research is being done and hopefully they come up with some answers. Look after yourself everyone. Thank you for these videos. They are so helpful to try and inform my loved ones and help me to feel less alone.
The twitching sounds like Restless Leg Syndrome and pins and needles are neuropathy. I use Nature's Inventory Night Time Leg Calm (essential oils mixture) for RLS and a frankincense and myrrh cream for neuropathy. Both can be ordered on line. Also I take Sinemet for RLS. I thank my compounding pharmacist for steering me to Night Time Leg Calm. An epsom bath soak can help as well (Dr. Teal's Lavender epsom salts are great.) I can't have any fragrance in my bath and grooming aids as I now have psoriasis everywhere and fragrance makes it feel like I am on fire. (I also have FM and hypothyroidism.)
thank you for this vid , i am a severe sufferer , i had m.e as a teen and recovered but relapsed 4 years ago with no break yet ,.... what you said about not recognising your own face is so true, ... praying every day for the cure xxxxx
Oy your this video is relatable in many ways. My eye bags are quite a thing as well as swollen lids. I always carry concealer in my purse but … sometimes I’m too tired to apply it anyway. 🤪 Visibly I’ve gained gained weight from medications. Menstruation cycles make me even more exhausted. Used to be a dancer and singer and an energetic Children’s performer. I’m so sad I just don’t have the energy or the vocal stamina to perform anymore. And the brain fog is visible to others, especially close to me. I try to just laugh at it. Told the barista at Starbucks I wanted xyz coffee, not a “kama sutra” coffee. My husband quickly and gently said, “you mean the Sumatra blend, dear.” 😁😁😁 and - I used to be a barista at Starbucks years ago. 🙈 I just try to plod along as best I can these days and that’s all we can do. Thanks again.
I have the butterfly rash and frequent bursts of hive rashes. My muscle tone is still pretty good. Randomly losing my balance, looking like a drunk is always fun.. my eyesight comes and goes, I think it's from the brain inflammation. I get puffiness. I get dehydrated and you can see it in my skin. My voice gets hoarse. 26 years. Remember, you know more then your Dr.
I was diagnosed in 2008, and got progressively worse over the years. Symptoms were so bad that I had to use a walker at times to just move around the house. I turned that around last year when I tried mega-doses of benfotiamine (form of vitamin B1) along with some magnesium. (1500mg per day of benfotiamine, 3750mg of magnesium). Some people find that CoQ10 also helps, and some other energy-related supplements. For me, the magic was the B1/Magnesium. I had tried medications and supplements for over 10 years with nothing helping, and then found the B1 regimen. It took about a week on that regimen, and nearly all symptoms vanished. Balance issues fixed, able to walk in a straight line again, able to see straight again, Parkinsonian symptoms disappeared. It's all quite remarkable. There are studies proving this out, too. Take a look at EONutrition's channel where he discusses the symptoms of B1 deficiency.
Hi that’s weird, cause I started taking some B1 as well as that round nut that has it? Forget the nut lol…anyhoo I have noticed lately been able to spend more time with people like family before I have to crawl into bed. I do B12 shots and take other stuff. Thanks!
Iv had fibromyalgia 18 years getting worse as the years go on and M E chronic fatigue 17 years getting worse over the years sleeping a lot in and out of bed every thing is a effort appetite not good days were I'm tired exhausted to prepare food and eat it can not cope with to much metal activities like to many people miss a lot of sociol activities like wedding birthdays and funerals as to exhausted to get ready alot of pain with fibromyalgia I have dogs so I have to get out of bed to see to them which is good realy have to pace my self a lot hugs love to all xx .
Female: The visible changes for me have been weight gain, puffiness in my face, skin rashes, paleness, loss of posture, and muscle loss. My balance has become so poor that I now have a walker to be able to walk in my house. I've become bedbound. But pushes myself to take a few careful walks in my house to prevent blood clothes and poor respiration.
All of the above!!!!! At 49 and healthy. 8 days after receiving the first moderna shot, i suffered a massive stroke, 6 months later, major car accident causing moderate brain injury. Not being heard!!!
Yes to almost all these symptoms except hair loss and muscle twitching. Although my legs sometimes ‘jump’ involuntarily at night. And I have restless leg syndrome. I was diagnosed with fibromyalgia two years ago but it has become increasingly worse to the point that even a walk around a supermarket or garden centre has me sleeping most of the next day, and my whole body aches. I now use a stick when going out. My balance is bad and my short term memory. I am terrified that I’m developing dementia like my late mum. I am seeing my GP next week and I’m taking a very long list of new symptoms.
Your GP will most likely be little to no help at all. I too at the peak of this was terrified I was developing early onset Alzheimer’s. Learning to recognise what foods, thoughts, people and actions trigger a flare up will be most helpful, along with watching recovery videos on TH-cam
One other big thing is..I was a very social and hard working woman, very fit and nowadays I just want to be alone, I can't stand loud and many noises, I use noisecancelling ears everywhere. I use sunglasses if light gets to bright also. But I love my own company more and more, I just can't interact with people anymore as I used to.
Thanks for the video. I’m female but have many of the same that you describe. Sometimes I look in the mirror and see a very pale exhausted person with dark under eyes looking back and it’s like I don’t recognise her. My vision has deteriorated a lot too as well as the inability to stay focused on something.
Yes, I first noticed the loss of muscle and headaches but I listened to a doc who told me it was aging. But you all seem like a bunch kids, and I can remember being a kid (teens) when the first wave hit me. You are the first one who has mentioned reaction to medications. I'm one of those who can't take Low Dose Naltrexone. I'm still trying to recover from that adventure! One of my docs has tracked my meds and I tell other docs to call her if they really want to understand what I mean about being in the Exceptional 1% who reacts. Posture!! I was a military kid and a dancer -- I sat and stood and walked up straight even as an adult. I listened to a doc who told me it was aging considering that I'm 73. This is the first time I've found people who understand weird reactions to medications. I'm one of those who can't take Low Dose Naltrexone. It was prescribed and I could not make it up to 6 mg. dose. I made it to 3 mg before getting side effects, and titrating down to 0 mg. was lengthy. I'm still treating results of side effects. One of my docs has tracked my meds and I tell other docs to call her if they really want to understand what I mean about being in the Exceptional 1% who reacts. Unsteady gait! I have a narrow hallway that goes to the bedrooms. Rather than bump into the walls, now I just touch the wall and I always use handrails. Again, docs suggest it's because of my age and now I'm a "fall risk". But this happened when I was 16 and no one addressed this symptom until now. Posture! Yes. I was a military kid and a dancer -- I sat and stood and walked up straight! I'm not the me that I knew but in my head I'm still 18 and I forget about the years that have passed and that all of this happened after MECFS first episode. Talking about the symptoms and hearing you all, I realize there are symptoms that I have that I never mentioned. I never mentioned the numb spots. I thought everyone had spots of numbness like mine. Never heard of anyone with orthostatic intolerance and when it first happened there was a big flap in my 30s and the docs decided it was medication related. If only those docs were around now. THANK YOU ALL FOR SHARING AND FOR OPENING MY EYES AND GIVING ME THE LANGUAGE I NEEDED TO BE ABLE TO NAME WHAT WAS GOING ON WITH MY BODY!!! With specialists, my PCPs have sent me to them rather than treat me as a whole person. In many cases, a single symptom has been treated as if it were The Problem and referred out. (Still looking for an MECFS doc.)
For women, makeup hides eye bags and darkening, so we look better than we feel. It masks that visible symptom, but to our detriment. Sometimes i wonder where the line is between putting my best foot forward and creating a reality that doesn't exist and masks how i really feel. But isn't that the purpose of makeup? Yes... but for ME/CFS, it creates a bigger gap between others' expectations and my reality. I want to be my best self but still manage expectations. It's a tough balance.
I'm two weeks into a diagnosis. Every minute since I've spent researching. Determined to get well. Today has been my toughest day emotionally. Finally broke down in tears for the first time and felt pretty hopeless. Fatigue/Brain fog/cognitive most disturbing. But there are others. I went from fit to fat pretty quickly. Gained 35 lbs rapidly and haven't been able to lose it in spite of healthy eating/intermittent and 3 day fasting. Much of it in my belly. Muscle tone is completely gone. Hair falling out past year, pretty thin. Loss of eyesight. Felt I was rapidly aging and looked it. The wrinkles came on but I've found ways to do some reversal. On good days I can do walking for half an hour. But I'm not sure if it was causing the roller coaster of crashes or not. If I eat a meal I usually crash soon thereafter. So I usually don't eat until late afternoon or evening. Just 1 meal a day. I've lost balance and had a couple of falls since July. I had a painful cracking neck at the base of my skull and both shoulders early in my illness two years ago. Deep into the pandemic, the Dr assumed I had anxiety. I accepted a prescription for Lexapro, and I did feel calmer. Surprisingly, the long-standing neck pain disappeared within a few days. Does that make sense to anyone? I'm hearing of cerebral spinal fluid being tested for HPA axis functioning? What could be going on at the back of the neck? Pituitary? In one article it said the extraction of the fluid surprisingly relieved the patient's symptoms temporarily. The longest for three weeks. The shortest a few hours.
Yes the neck thing was a big issue for me. Felt like my skull was getting caught on the top of my spine. At the peak of my me symptoms I could not sit down at all as my head immediately locked onto my spine, trying to release it would illicit a loud crack, while any movement was accompanied by a wet crunching sound. Also this area always felt hot painful and swollen. I focussed on being very conscious of how I held my head.. pushed slightly back and chin tucked in. It’s way better now
I suffer with fibromyalgia, me/cfs, i also suffer from vestibular migraines. Ive gone from working full time, to being housebound, unable to work, in bed most of the time. Ive been diagnosed a yr. Ive always had medication allergies anyway. Im learning to pace so i save my energy. My eyes have worsened over the last few yrs. If i become ill, it takes me wks to recover. Im going through menopause on top of that. My physio noticed i wasnt breathing correctly and im tight in my body posture, so i get that totally.
Does anyone else get a droopy face when their fatigue hits. I also get speech problems as well as the brain fog, my tongue gets confused /weak like drunkenness. My eyes struggle to stay open like they have weights, not just from ssleepyness. It feels like the muscles are not getting the signal from the nerves. Face cant wake up.
After 27 years with ME I've virtually no muscle tone, same with posture - I've always danced and worked out but I'm too tired to sit or stand straight. Weaknesses: washing my hair is easier if I bend forward a little rather than hands above head. I'm still thin although a little heavier than previous due to age) and I think this is due to the humongous amount of energy it takes to do simple everyday tasks - every cloud has a silver lining and I'm guessing this is mine 😊
Yes I agree a lot of what you experience. Cramps, vision I needed new glasses, muscles pain especially my upper body hurts, I always was very strong but now I need to get help for even the groceries, diarrhea once or twice a week, hairloss for 4 months it took a year to grew back, I never had bags under my eyes.. but he..now I have them often. My balance sucks also I need to keep in touch with something if I stand still. I walk very slow, I used to walk quick but it's now very slow. My whole body looks different also I used to have a toned body and trained, now it's soft and looks like old aging. I experience tinnitus also for about 40 years but it has doubled in sound since 2 years. My heart gives fibrations 2 different kinds and that increases when I go over my limit of doing things on a day. Well I could go on and on.. its just hard. And it's all getting worse.
Leading up to my period everything gets worse,insomnia, I have to take anti histamine as my allergies get worse, worse fatigue everything slows down. I pushed myself last month and had a relapse, after 6 years you think I would learn. I so want to live life and not be stuck at home while my husband goes out with my son. It is a very tough illness. I know there is a God who loves us and there must be a reason for this suffering. I don't want to waste it. I am a different person from having M.E. I have learnt so much and was a very highly strung person that pushed myself constantly. I have learned not to do that and listen to my body,self care. But sometimes that part of me that pushes comes back and I pay. Keep enduring, keep learning and growing, be grateful for what you have and make the most of your situation. I get swamped with negativity like everyone else going through hell but you have to shift your mind to being an overcomer. I will get free from this one day and be better,stronger person.
I have noticed that if they change generic brands of my meds, I have a reaction to different generics. Also, Ibuprofin never bothered me. Now, I get nautious with just one pill. Muscle weakness. Ugh...I pull bicep muscle trying to squeeze out shampoo or water from my hair. Taking a shower is a nightmare. I cry on shower day because it is terrifying. I have to take one today and am panicky. I grieve my old self a lot. Not on purpose, but I think "I think I'll go to the store and get a pack of gum". Than I remember I can no longer drive or walk from car to store, much less thru the aisles. And I grieve. Thanks for your videos. Have a nice day.
9:20 I am watching the male version of myself. At 33yrs ,now 67, The only difference is it took me 30yrs. To know what u do now.. Right down to the swag in my walk.(smile)GONE.. YOU ARE MY TWINFLAME I GUESS ,SO SPOT ON FROM PHYS-MENTAL WITH CFS. CONSIDER YOURSELF WITH WHAT A BLESSED LIFE WOULD 🙏 HAVE BEEN.. I also had your "humbleness". WASTED LIFE ,WHY? STILL DEDICATING THE GOD GIVING GIFTS, STILL "FIGHTING FOR EVERYONE"..💜 💪
I'm female and I've experienced all the symptoms you've listed except hair loss (although recently I've noticed my eyebrows have become much thinner). Aside from fatigue, my most disabling symptom is muscle weakness and twitching. The twitching is constant in my feet and legs, and the movements are visible beneath the skin. My toes are constantly moving in a sort of writhing motion and I have no control over it at all. It isn't exactly painful but it's extremely uncomfortable. I've also experienced muscle wasting and look as though I've lost weight despite being so inactive. I also get bags under my eyes and look unwell at times.
I agree with all of your comments. I’d add lymph node enlargement around the neck, just enough to be visible as a sight swelling, sometimes looking like a swollen thyroid also. My Doctor would keep testing my thyroid, and it would be normal…. But of course our immune systems are always challenged just enough, that we’re extra susceptible always catching everything, but blood results ‘looking normal’. Another thing, most of us often carry extra weight because it’s difficult to be as active as our age cohort(s) especially when first diagnosed/usually in flare up, and if you’re younger when diagnosed. I was 25 at onset, 2 yrs later to diagnosis, and the early meds made me eat voraciously and not sleep much…. Eventually I got a better balance with it all but always a higher BMI than I’d like until more recently. Most people with disabilities struggle with cyclical weight problems with flare ups, fatigue and inactivity. I think it’s so difficult and further exacerbates everything, when you want to do better to stay as well as possible. But, we all do the best we can, as we are able to.
I suffer from auto immune diseases in the last 6 months I have had active cmv virus on top of my flare ups from RA/sle lupus / sjogren's syndrome / the latest flare up was Or like ME or MS I’m waiting on test results from my Immuologist and neurologist Was in the ER 3 times in 3 weeks I never have been so tired. It’s felt like I hade a nervous system seizure. I couldn’t hold my head up I felt paralyzed. My arms and legs felt like they were weighed down by sand bags. I could feel the nerves so fire off throughout my system. My calves still cramp and I have very mild after math symptoms. But nothing so far like that has happened again I have not felt good since I first got vivid 2 years ago. I think my immune system can’t keep up with all the new strains and diseases. I feel like I have to live in a bubble. But then we only live once. I’m super hyper sensitive to everything so plus I’m going through counseling now to heal the past inner child. Jennifer’s documentary was such a blessing. I just barely watched it. Gosh I feel like I’ve been living under a rock. I do want to meet her and just give her a hug. We are warriors stay strong no diseases or illnesses can stop a strong stubborn soul 🙏🏼❤️🩹💞
I used to lift weights and was very strong. Im a girl but was always the next best thing to a guy. Lol i didn't mind getting dirty under the car hood or running my cars through the mud. I have a hard time opening a water bottle especially when i am at a high tilt flare.i have had cfs for a year before a chiro fractured my spine. Then i had a tia. I used to be a walking rememberer of names numbers etc.. i worked in lock down mental health facilities and knew most DSM4 codes and sub codes and ICD9 billing and regulation codes. I can't remember much because of my whirlwind of garbage. I lost a lot of my hair and it grew back a different texture and in a different direction and color. In my eyebrows and other parts of my body. I still lose it and now my brows don't want to come back!! I slways look pale with dark circles now. But after years of felling like you never have slept even though you dream can put a lot of age on your face. My skin does weird stuff it's leather like or a grease ball. I used to be a professional make up artist my hair and teeth were beautiful!! Now i can't remember how to put my makeup on nor does its stick right I can't manipulate a curling iron or even cut my hair like ive done dince i was 12!! Thats gone wrong since my #4 tia in dec. I also got vovid now 3 times. So i have so many stupid labels. Me/cfs, long haul covid and automatic dysfunction.. seems like the medical people well those who try to care are understanding that they are all similar and it could be linked to a viral infection... So i hope they figure out something. Because its all compiling together and feels so much the same but so much worse that 2 yes ago. So now i look and feel like im wearing someone else's body. I used to dance too goid actually. Janet Paula, Michael Brittany and me! Lol seriously though... Now when my leg jerks when i walk im like "Thriller"!!! Ha.. ha.... Haaaa...
I have all these symptoms except hair loss and the other 20 you listed. One symptom I also have is when I walk my legs feel as if they're going to split and it feels as if the bones in my legs are being crushed inside my body. I'm a 73 yr lady who looked forward to volunteering when I retired and if I have the energy to shower I'm lucky, I rarely leave my house. I've lost all but one friend but I have the companionship of my brother, he cooks for me because I don't have the energy. In ten years all the doctors I've been to not really diagnosing the source of my pain just give me pain pills. God I wish I could find a doctor that cared. I miss living life, I'm just existing.
For me - muscles twitching, mostly in my hands, weakness in my hands and arms, dry skin. Dizziness and leg pain when standing up, and of course visible slowness when I try to do anything.
Hi, Johnny! I’ve developed skin/scalp dry skin issues, eye issues, balance, startle easily, involuntarily leg kicks and muscle twitches. I must recline and cannot sit up for long periods of time. Brain fog..
I'm just two months into this. Dysautonomia, gut issues, bags under my eyes that weren't there. I can physically do things but my brain is so tired. I can't concentrate, short term memory is a problem. I can forget the point I was making when speaking. Light sensitivity. Haven't been diagnosed with anything yet. I used to workout and play basketball 2-6 hours almost everyday. Now I can't work too dizzy and can't think.
A hallmark symptom of ME is PEM. Post Exertional Malaise. If you become significantly worse after physical activity and dont recover from resting, I would talk to a Doctor about M.E.
I’ve had this since 1988 after contracting “the Cambodian flu” on a plane. Then 2 yrs. of Dr.s poo-pooing me and taking all the flu shots. A naturopathic Dr. finally diagnosed it as “EBV” in 1990. I went to some teaching seminars which were vague at best, but at least I hooked up with my peeps and found out I was not alone. That alone was very healing- I found out at least that I wasn’t a hypochondriac. NOW after the cooties-19 and the “thing” (which I refused) it is all coming into the light THANK GOD. I just started B1 & the magnesium and I ALREADY FEEL BETTER ❤️🩹 BTW I am 71, female and have had all the symptoms you describe. TY for this channel‼️🎯
Do you use wheelchair? I have got my first one recently to save some energy and if possible get out of the apartment. I only tried it indoors so far. But I get so nausous from it😢 I never thought I would get so much worse so fast, this sickness really can change quickly.
I can barely stand up after 17 years with this disease...from sheer pain and weakness/ the doctors where I am have turned their back on us...so yeah to thrive one must do what they can in the midst of pain and total lack of understanding from anyone and everyone. Also I have lost my family and friends has that happened to anyone?
Yeah. Definitely. I ve been experiencing all of these symptoms in the last miserable decade which i ve been having cfs, lyme, cirs and so much more 😮💨
@@fight4me747 i see. I think cirs and cfs often go hand in hand 🤔 much of the same physiological stuff happening: lymph /detox issues, mitochondrias disfunctional, etc 😶
Hi i love your videos i would say ive lost my strength looks energy happiness and hair . Its such an awful illness i too struggle with vertigo balance issues . I run into door frames all the time.
I've been living with ME/CFS for 16 years, at a moderate level. Does anyone else feel like they need to lie down at least once a day?, not to take a nap but the need to be in a horizontal position for at least a few minutes to be able to go on with the rest of your day? I don't suffer from POTS or anything like that, it feels like my head is getting heavy and I have to lie down. It could be a muscular issue I guess...
Sometimes I can't sit straight at all because my back muscles are so weak and begin to spasm, I also have hour long episodes of my limbs shaking especially my legs
I have similar Symptoms as you. I also have Muscle Wasting, I did have a muscle biopsy which shows that my muscles are deteriorating siterating some. I have been diagnosed with ME/CFS, Fibermyalgia, POTS, Automotic dysfunction. Once a month I suffer from severe vomiting and diarrhea For at least 48 hours. I do have digestive problems problems and can only eat certain foods. I Can relate to muscle Cramping all over the body. I have only been diagnosed with this for the last 3 years. I also suffer dull headaches it's at the base of my skull skull in the back I do not understand what this is and had several MRI's And nothing I am not sure if they are actually actually going down to the base of my neck with the MRI's.
Hey there, I'm seeking a niche treatment. Have you checked out Floxed by fluoroquinoles (specifically Cipro or Lavequin) and cervical spine instability/distructure at caring medical.
@@fight4me747 It can cause Vagus Nerve degeneration which causes a myriad of symptoms, I discovered that I related more to this issues. Post exertional malaise started to make more sense when I explored these conditions and ligament laxity, seemingly my most prominent issue
How do you exercise? Do your hands around the fingers or legs around the ankle get pain even days after working out even when it's like only flexibility exercise on the leg (and not even hard ones)? Do you also kinda have vague pain around your center right of abdomen? Do you have coughs at night after eating certain foods? Do you also have like language problem like you put the verb first before the subject (both in typing and speaking)?
Check out cci aai, hypermobility syndrom in the ligamenta alaria....my son had cfs because of this! And there are regenerative treatment for this problem. Maybe it is something different, but check this out! Sorry for my english!
Have had M.E for the past 32 yrs and it could have been me doing this video clip ! one thing I have not had is my hair falling out ,though I use to color it for yrs until one time I had a very bad reaction ,it started as small pimples but they grew and felt like hard plastic (any hair I had where this popped up fell ) stopped coloring my hair since then.The bags under my eyes look horrible . I'm a female and got M.E after getting infected with Epstein barr virus.
Dude I’m a marshmallow 😆 because of so much muscle loss. I saw someone else mention being extra sensitive to cold and I had attributed to all the muscle loss
![ช่วยพาฉันผ่านเวลา - วสันต์17 [Official MV]](http://i.ytimg.com/vi/HFnntWoqc54/mqdefault.jpg)
M.E. is more than Fatigue -20 symptoms people deal with *Must Watch* : th-cam.com/video/iiFCRWcDfGA/w-d-xo.html
I have the same symptoms as you have described (except hair loss). I would add being very quietly spoken, as well as the side of brain fog that disrupts speech (loosing words and trail of thought during conversation, malapropisms, taking longer to process what someone has said to you so taking longer to reply). And like you said, it's all of it going on with sudden onset.
I found it reassuring to hear that all of these external symptoms are the M.E. and that there are people who can relate. It's like I need reminding sometimes.
Thank you for your upload.
Hi. I have had M.E. since 1997. I couldn't work and this year I got my old age pension. Such a relief not to have to prove that you are Ill to access money. As well as all the symptoms you describe I feel dizzy if I stand and I am always hot (not hormone related). Pacing is the only way . If you go over it can take days or weeks to recover . I spend 80% of the day in bed. I was fortunate to get diagnosed very quickly . I payed privately to get diagnosed so that I could access benefits. G.P.s have varied over the years and they seem to be getting marginally better .
Yes, I’m female and I’ve also experienced muscle loss, puffiness around my eyes and paleness. I have trouble not hunching & tightness -it’s like I don’t have the strength & energy to hold myself upright. And Yes, I adverse reactions (sometimes critical) to almost every medication, ct contrast..... the doctors try to treat me with. Thanks for the videos & thanks for using the soft (not too bright)background color😁.
yes, about the light - !! I've got everything set to dark mode - i just had to check my mail (which isn't ) and cannot se a damn thing - so hop ei type well. ;)
Yes! Yes! Yes! Hang in there!
So true about the posture, I feel like my breasts are pulling me forward -I've gained weight because of ME/CFS of course-, my chest muscles get tight, and my back muscles are not strong enough to pull me back up. So uncomfortable.
I’ve gained weight because I don’t do as much as I used to. I don’t talk as much as I used to. I can’t be around people as much either. Thank you for the video. I also have the same issues as you especially the bags under the eyes which I didn’t know were related to Me/CFS.
Can relate to all these symptoms. I'm actually too scared to brush my hair. I used to do intermediate ashtanga yoga, but can't even get into downward dog now. In addition to balance, I've lost all my flexibility and strength, and have become stiff and frail like a geriatric. My posture has been bad all my life, but seemed to worsen in the last few years. I'm seeing a chiro for it, but I have to keep going back. Same with my eyesight. I've always had myopia, but recently started to get double vision. I also get tinnitus. I've had so many tests, but guess what? All normal, except for my cholesterol which is off the chart. Posture and twitching could be related to digestive issues, i.e lack of absorption leading to low cellular calcium and copper. Professor Ron Davis said that whenever he tests the blood of CFS patients, they appear to be in peak health. However at the cellular level everything is abnormal. It is a disease where little things make a huge detriment: staying up too late, eating the wrong thing at the wrong time, getting worked up. We're sensitive to every small stressor, including ones we can't even control, like gravity. I've found Wim Hoff breathing and cold morning swims to be of some help. So far it's the only thing that gives me some energy. I've heard red light therapy can help too, although the lights can be expensive. Instead find a good sunset and try basking in it.
As a woman unbalanced hormones and irregular cycle are another worrying sign. My weight is normal, but I have suddenly started holding fat in areas I'd rather not, like my belly instead of my hips. Sometimes I wake up so puffy I look fat.
PS. You sound like I did on Sunday. Hope you feel better soon x
Im rooting for Ron Davis. I hope he continues to discover more and more details about M.E.
I had most of the above except:lost of hair and stomach issues. The most worrying was the lost of balance, but my opinion is that is not related to neurological issues. I would rather say is the lack of strength in the muscles.
As a female with ME I was listening and saying check, check, check, I have all the symptoms you stated. Also, other visible symptoms I suffer from are brain fog, aphasia (loss of words), extremely dry skin, areas of intense itching with no cause, especially during a flare.
I was just diagnosed with this a few days ago and I have every symptom you mentioned. Muscle twitching was worrisome when it started up because it didn’t go away. Unexplained hives all over and flushing and skin rashes. Also shortness of breath has been really difficult for me. It feels like I just can’t fill my lungs with air all the way like I use to and am constantly gasping for air. It will flare sometimes when I’m not even doing anything at all. I also get bags under my eyes and puffiness and look pretty ill. I get heart palpitations a lot and tachycardia. It’s been a wild ride. I didn’t even know what this was until this last week and wondered if the doctor diagnosed me with the right thing but the more I research it the more I realize this really is it. I think the hardest thing about it is not looking sick all the time and people don’t understand how bad it can be or why you can’t do things like they can. They don’t understand if you do, you literally might end up in the hospital. I think it’s confusing to them remembering all you could do and not believing that it’s really possible to be that sick to where you can’t do so many things at all anymore. I tried to work at an assisted living facility last summer and it was a lot of physical labor and I only made it a few weeks and spent the entire summer from may to the end of august in and out of the hospital with so many EKGs and I’m surprised I had blood left in my body after the amount they took 🤣 i couldn’t move from my couch at all. I always try to push myself and end up so sick. I think after last summer I finally learned my lesson and am respecting my body a lot more because it’s exhausting and I didn’t think I was going to make it. Thank you for making these videos! 🙏🏼
Sorry you have been diagnosed with this. Just pace yourself until you find a solid baseline. Start looking up things like LDN.
Thank you and God bless, I am writing from my couch, about 3 yrs. on it most of the day 😂💔
This illness sucks the life right out of you. Does anyone experience severe pain?
I have, it makes living so difficult.
It really does. I think many of us have some degree of pain.
I used to be an LPGA golf teaching pro. I could stand all day and give lessons. I could also walk 18 holes of golf with no problem carrying my bag. To attempt to play golf again would be impossible.
I also used to go to graduate school.
I at least finished a Graduate certificate, but didn't have enough money or focus to finish the Masters degree. Hard to focus on reading.
The Plandemic took away all my ministry and donations. So now , I have a hard time making money. But God always supplies my needs. (Philippians 4 19)
Let's keep praying and staying close to God . Thank you for all your videos , John. Keep up the good work 😃. Miss Monique 🙂🙏🌷
I used to be rather active myself. Its hard giving it up.
EXACTLY my story! Take care, and God does provide doesn’t He❣️🙏
You are describing me, too. .I have had every symptom mentioned by you and all the people commenting since my teens and I am 75 now. My prayers are with all of you. (and now I'm being tested for Pancreatitis.
I have had most of these visible issues.
Its a terrible illness
it is so frustrating to watch your muscles melt away, the weakness is scary for me . i had Fibromyalgia so i was used to pain - this is another world i'd rather not be in. i panic because my eyesight changes daily - i can't go out in the day time now. Twitching - yup, just try sleeping. Allergic reactions - yup, now i carry an epipen . Bloody hell you have mentioned everything that has changed for me in the last 3 years!
Yup, fat, weak, hair falling out, bad eye sight, lines on my nails. Permanent muscle contraction in 2 spots and occasional spasms. I React to certain foods, meds and supplements too. Not rashes,, more headache,, short of breath, palpitations, occasional stomach.. Talking slow in conversation, or not talking at all because no breathe. Lost half my personality. When you can barely talk, cry or laugh. On and on it goes. Life sucks. I try to find enjoyment where I can. But not easy.
Thank you for this video. I can sadly relate to most of these symptoms too, particularly the sensitivity to medications and vaccines, which is a big problem for my other medical conditions, and looking so tired and exhausted. I also really suffer with twitching sensations in the legs (along with awful crawling pins and needles sensation especially bad at night affecting my sleep). I wonder if anyone else suffers with that? There is a new large research study into ME/CFS about to start being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh which I am hoping to sign up for. It is good that some research is being done and hopefully they come up with some answers. Look after yourself everyone. Thank you for these videos. They are so helpful to try and inform my loved ones and help me to feel less alone.
The twitching sounds like Restless Leg Syndrome and pins and needles are neuropathy. I use Nature's Inventory Night Time Leg Calm (essential oils mixture) for RLS and a frankincense and myrrh cream for neuropathy. Both can be ordered on line. Also I take Sinemet for RLS. I thank my compounding pharmacist for steering me to Night Time Leg Calm. An epsom bath soak can help as well (Dr. Teal's Lavender epsom salts are great.) I can't have any fragrance in my bath and grooming aids as I now have psoriasis everywhere and fragrance makes it feel like I am on fire. (I also have FM and hypothyroidism.)
thank you for this vid , i am a severe sufferer , i had m.e as a teen and recovered but relapsed 4 years ago with no break yet ,.... what you said about not recognising your own face is so true, ... praying every day for the cure xxxxx
I hope you find relief soon!
have you looked into wether or not it might be ebv virus? it often causes cfs in women, a simple blood test can tell and there are cures
I loved how you covered most things that seldom get a mention. Back pain is a biggie for me. Sciatic pain from being sedentary.
Oy your this video is relatable in many ways. My eye bags are quite a thing as well as swollen lids. I always carry concealer in my purse but … sometimes I’m too tired to apply it anyway. 🤪 Visibly I’ve gained gained weight from medications. Menstruation cycles make me even more exhausted. Used to be a dancer and singer and an energetic Children’s performer. I’m so sad I just don’t have the energy or the vocal stamina to perform anymore. And the brain fog is visible to others, especially close to me. I try to just laugh at it. Told the barista at Starbucks I wanted xyz coffee, not a “kama sutra” coffee. My husband quickly and gently said, “you mean the Sumatra blend, dear.” 😁😁😁 and - I used to be a barista at Starbucks years ago. 🙈 I just try to plod along as best I can these days and that’s all we can do. Thanks again.
You have to laugh at times just to keep from crying.
I have the butterfly rash and frequent bursts of hive rashes. My muscle tone is still pretty good. Randomly losing my balance, looking like a drunk is always fun.. my eyesight comes and goes, I think it's from the brain inflammation. I get puffiness. I get dehydrated and you can see it in my skin. My voice gets hoarse. 26 years. Remember, you know more then your Dr.
Hey Julie, The butterfly rash on the face? Isn't that indicative of Lupus? Have you had that checked out ?
@@fight4me747 I've had lupus symptoms the whole time but the test is negative.
Yes my eyesight comes and goes. Also insect bites, which I never reacted to before now seems like I have an allergic reaction to.
My reaction to insect bites is crazy. @@skinscapetattoo
I was diagnosed in 2008, and got progressively worse over the years. Symptoms were so bad that I had to use a walker at times to just move around the house.
I turned that around last year when I tried mega-doses of benfotiamine (form of vitamin B1) along with some magnesium. (1500mg per day of benfotiamine, 3750mg of magnesium). Some people find that CoQ10 also helps, and some other energy-related supplements. For me, the magic was the B1/Magnesium. I had tried medications and supplements for over 10 years with nothing helping, and then found the B1 regimen. It took about a week on that regimen, and nearly all symptoms vanished. Balance issues fixed, able to walk in a straight line again, able to see straight again, Parkinsonian symptoms disappeared. It's all quite remarkable. There are studies proving this out, too. Take a look at EONutrition's channel where he discusses the symptoms of B1 deficiency.
Hi that’s weird, cause I started taking some B1 as well as that round nut that has it? Forget the nut lol…anyhoo I have noticed lately been able to spend more time with people like family before I have to crawl into bed. I do B12 shots and take other stuff. Thanks!
@@Anisky123 The form of B1 can make a difference. Benfotiamine is one of the more bio-available versions vs. just straight-up thiamine.
@@karllogue5988 The one I have is Allithiamine. I’m definitely going to try the one you suggested. Thanks so much!
I take eo neutrino ions bit there tablets says 100 mg once a day you take 15 of those a day? If so packet be gone in couple so days
Is'nt it huge dose of magnenisum ?
Iv had fibromyalgia 18 years getting worse as the years go on and M E chronic fatigue 17 years getting worse over the years sleeping a lot in and out of bed every thing is a effort appetite not good days were I'm tired exhausted to prepare food and eat it can not cope with to much metal activities like to many people miss a lot of sociol activities like wedding birthdays and funerals as to exhausted to get ready alot of pain with fibromyalgia I have dogs so I have to get out of bed to see to them which is good realy have to pace my self a lot hugs love to all xx .
So now are u fine?
Female: The visible changes for me have been weight gain, puffiness in my face, skin rashes, paleness, loss of posture, and muscle loss. My balance has become so poor that I now have a walker to be able to walk in my house.
I've become bedbound. But pushes myself to take a few careful walks in my house to prevent blood clothes and poor respiration.
I was a runner and I can't work out any longer so my muscle tone is gone. Also my voice changes when I am in a flair it is raspy and weak.
My voice gets raspy as well during a bad flare.
@@fight4me747 I have no idea what causes it
My Disbalance /confusion/image jumping is extreme and one of my most debilitating symptoms. 😖
I thought my imbalance was rare. Looks like many have this.
I also have it in a flare up, walk into things, drop things and feel as if I am being pulled to one side
All of the above!!!!!
At 49 and healthy. 8 days after receiving the first moderna shot, i suffered a massive stroke, 6 months later, major car accident causing moderate brain injury.
Not being heard!!!
Yes to almost all these symptoms except hair loss and muscle twitching. Although my legs sometimes ‘jump’ involuntarily at night. And I have restless leg syndrome. I was diagnosed with fibromyalgia two years ago but it has become increasingly worse to the point that even a walk around a supermarket or garden centre has me sleeping most of the next day, and my whole body aches. I now use a stick when going out. My balance is bad and my short term memory. I am terrified that I’m developing dementia like my late mum.
I am seeing my GP next week and I’m taking a very long list of new symptoms.
Your GP will most likely be little to no help at all. I too at the peak of this was terrified I was developing early onset Alzheimer’s. Learning to recognise what foods, thoughts, people and actions trigger a flare up will be most helpful, along with watching recovery videos on TH-cam
Wie alt sind Sie ?
One other big thing is..I was a very social and hard working woman, very fit and nowadays I just want to be alone, I can't stand loud and many noises, I use noisecancelling ears everywhere. I use sunglasses if light gets to bright also. But I love my own company more and more, I just can't interact with people anymore as I used to.
Thanks for the video. I’m female but have many of the same that you describe. Sometimes I look in the mirror and see a very pale exhausted person with dark under eyes looking back and it’s like I don’t recognise her. My vision has deteriorated a lot too as well as the inability to stay focused on something.
People tell me I look pale all the time!
Yes, I first noticed the loss of muscle and headaches but I listened to a doc who told me it was aging. But you all seem like a bunch kids, and I can remember being a kid (teens) when the first wave hit me. You are the first one who has mentioned reaction to medications. I'm one of those who can't take Low Dose Naltrexone. I'm still trying to recover from that adventure! One of my docs has tracked my meds and I tell other docs to call her if they really want to understand what I mean about being in the Exceptional 1% who reacts. Posture!! I was a military kid and a dancer -- I sat and stood and walked up straight even as an adult. I listened to a doc who told me it was aging considering that I'm 73.
This is the first time I've found people who understand weird reactions to medications. I'm one of those who can't take Low Dose Naltrexone. It was prescribed and I could not make it up to 6 mg. dose. I made it to 3 mg before getting side effects, and titrating down to 0 mg. was lengthy. I'm still treating results of side effects.
One of my docs has tracked my meds and I tell other docs to call her if they really want to understand what I mean about being in the Exceptional 1% who reacts.
Unsteady gait! I have a narrow hallway that goes to the bedrooms. Rather than bump into the walls, now I just touch the wall and I always use handrails. Again, docs suggest it's because of my age and now I'm a "fall risk". But this happened when I was 16 and no one addressed this symptom until now.
Posture! Yes. I was a military kid and a dancer -- I sat and stood and walked up straight! I'm not the me that I knew but in my head I'm still 18 and I forget about the years that have passed and that all of this happened after MECFS first episode.
Talking about the symptoms and hearing you all, I realize there are symptoms that I have that I never mentioned. I never mentioned the numb spots. I thought everyone had spots of numbness like mine. Never heard of anyone with orthostatic intolerance and when it first happened there was a big flap in my 30s and the docs decided it was medication related. If only those docs were around now.
THANK YOU ALL FOR SHARING AND FOR OPENING MY EYES AND GIVING ME THE LANGUAGE I NEEDED TO BE ABLE TO NAME WHAT WAS GOING ON WITH MY BODY!!! With specialists, my PCPs have sent me to them rather than treat me as a whole person. In many cases, a single symptom has been treated as if it were The Problem and referred out. (Still looking for an MECFS doc.)
For women, makeup hides eye bags and darkening, so we look better than we feel. It masks that visible symptom, but to our detriment. Sometimes i wonder where the line is between putting my best foot forward and creating a reality that doesn't exist and masks how i really feel. But isn't that the purpose of makeup?
Yes... but for ME/CFS, it creates a bigger gap between others' expectations and my reality.
I want to be my best self but still manage expectations.
It's a tough balance.
thank you for your videos! very helpful!
I'm two weeks into a diagnosis. Every minute since I've spent researching. Determined to get well. Today has been my toughest day emotionally. Finally broke down in tears for the first time and felt pretty hopeless. Fatigue/Brain fog/cognitive most disturbing. But there are others. I went from fit to fat pretty quickly. Gained 35 lbs rapidly and haven't been able to lose it in spite of healthy eating/intermittent and 3 day fasting. Much of it in my belly. Muscle tone is completely gone. Hair falling out past year, pretty thin. Loss of eyesight. Felt I was rapidly aging and looked it. The wrinkles came on but I've found ways to do some reversal. On good days I can do walking for half an hour. But I'm not sure if it was causing the roller coaster of crashes or not. If I eat a meal I usually crash soon thereafter. So I usually don't eat until late afternoon or evening. Just 1 meal a day. I've lost balance and had a couple of falls since July. I had a painful cracking neck at the base of my skull and both shoulders early in my illness two years ago. Deep into the pandemic, the Dr assumed I had anxiety. I accepted a prescription for Lexapro, and I did feel calmer. Surprisingly, the long-standing neck pain disappeared within a few days. Does that make sense to anyone? I'm hearing of cerebral spinal fluid being tested for HPA axis functioning? What could be going on at the back of the neck? Pituitary? In one article it said the extraction of the fluid surprisingly relieved the patient's symptoms temporarily. The longest for three weeks. The shortest a few hours.
Look into Cervical Instability and its association to ME like symptoms. Hope find some relief.
@@fight4me747 Thanks! I will.
Yes the neck thing was a big issue for me. Felt like my skull was getting caught on the top of my spine. At the peak of my me symptoms I could not sit down at all as my head immediately locked onto my spine, trying to release it would illicit a loud crack, while any movement was accompanied by a wet crunching sound. Also this area always felt hot painful and swollen. I focussed on being very conscious of how I held my head.. pushed slightly back and chin tucked in. It’s way better now
Omg! I suffer from every single thing you listed 😕
Sorry to hear that. It can all be overwhelming.
I suffer with fibromyalgia, me/cfs, i also suffer from vestibular migraines. Ive gone from working full time, to being housebound, unable to work, in bed most of the time. Ive been diagnosed a yr. Ive always had medication allergies anyway. Im learning to pace so i save my energy. My eyes have worsened over the last few yrs. If i become ill, it takes me wks to recover. Im going through menopause on top of that. My physio noticed i wasnt breathing correctly and im tight in my body posture, so i get that totally.
Thank you for these videos
Does anyone else get a droopy face when their fatigue hits. I also get speech problems as well as the brain fog, my tongue gets confused /weak like drunkenness. My eyes struggle to stay open like they have weights, not just from ssleepyness. It feels like the muscles are not getting the signal from the nerves. Face cant wake up.
I have def. heard people with M.E. describe the same symptoms you're having. I would def try and rule out other Nero illnesses just to be safe.
Could be ME, could be Myasthenia Gravis as well. I have the same symptoms as you and I am getting tested for both.
After 27 years with ME I've virtually no muscle tone, same with posture - I've always danced and worked out but I'm too tired to sit or stand straight. Weaknesses: washing my hair is easier if I bend forward a little rather than hands above head.
I'm still thin although a little heavier than previous due to age) and I think this is due to the humongous amount of energy it takes to do simple everyday tasks - every cloud has a silver lining and I'm guessing this is mine 😊
Yes I agree a lot of what you experience. Cramps, vision I needed new glasses, muscles pain especially my upper body hurts, I always was very strong but now I need to get help for even the groceries, diarrhea once or twice a week, hairloss for 4 months it took a year to grew back, I never had bags under my eyes.. but he..now I have them often. My balance sucks also I need to keep in touch with something if I stand still. I walk very slow, I used to walk quick but it's now very slow. My whole body looks different also I used to have a toned body and trained, now it's soft and looks like old aging. I experience tinnitus also for about 40 years but it has doubled in sound since 2 years. My heart gives fibrations 2 different kinds and that increases when I go over my limit of doing things on a day. Well I could go on and on.. its just hard. And it's all getting worse.
Leading up to my period everything gets worse,insomnia, I have to take anti histamine as my allergies get worse, worse fatigue everything slows down. I pushed myself last month and had a relapse, after 6 years you think I would learn. I so want to live life and not be stuck at home while my husband goes out with my son. It is a very tough illness. I know there is a God who loves us and there must be a reason for this suffering. I don't want to waste it. I am a different person from having M.E. I have learnt so much and was a very highly strung person that pushed myself constantly. I have learned not to do that and listen to my body,self care. But sometimes that part of me that pushes comes back and I pay. Keep enduring, keep learning and growing, be grateful for what you have and make the most of your situation. I get swamped with negativity like everyone else going through hell but you have to shift your mind to being an overcomer. I will get free from this one day and be better,stronger person.
I have noticed that if they change generic brands of my meds, I have a reaction to different generics. Also, Ibuprofin never bothered me. Now, I get nautious with just one pill. Muscle weakness. Ugh...I pull bicep muscle trying to squeeze out shampoo or water from my hair. Taking a shower is a nightmare. I cry on shower day because it is terrifying. I have to take one today and am panicky. I grieve my old self a lot. Not on purpose, but I think "I think I'll go to the store and get a pack of gum". Than I remember I can no longer drive or walk from car to store, much less thru the aisles. And I grieve. Thanks for your videos. Have a nice day.
I also have reactions to generics. What an odd illness.
@@fight4me747 I know! The pharmacists think I'm an odd duck!!
😘
9:20 I am watching the male version of myself. At 33yrs ,now 67, The only difference is it took me 30yrs. To know what u do now.. Right down to the swag in my walk.(smile)GONE.. YOU ARE MY TWINFLAME I GUESS ,SO SPOT ON FROM PHYS-MENTAL WITH CFS. CONSIDER YOURSELF WITH WHAT A BLESSED LIFE WOULD 🙏 HAVE BEEN.. I also had your "humbleness". WASTED LIFE ,WHY? STILL DEDICATING THE GOD GIVING GIFTS, STILL "FIGHTING FOR EVERYONE"..💜 💪
I'm female and I've experienced all the symptoms you've listed except hair loss (although recently I've noticed my eyebrows have become much thinner). Aside from fatigue, my most disabling symptom is muscle weakness and twitching. The twitching is constant in my feet and legs, and the movements are visible beneath the skin. My toes are constantly moving in a sort of writhing motion and I have no control over it at all. It isn't exactly painful but it's extremely uncomfortable. I've also experienced muscle wasting and look as though I've lost weight despite being so inactive. I also get bags under my eyes and look unwell at times.
My Immuologist gave me ph structured silver. I no side effects and it’s helping amazingly not sure if you heard or have tried this
I agree with all of your comments.
I’d add lymph node enlargement around the neck, just enough to be visible as a sight swelling, sometimes looking like a swollen thyroid also.
My Doctor would keep testing my thyroid, and it would be normal….
But of course our immune systems are always challenged just enough, that we’re extra susceptible always catching everything, but blood results ‘looking normal’.
Another thing, most of us often carry extra weight because it’s difficult to be as active as our age cohort(s) especially when first diagnosed/usually in flare up, and if you’re younger when diagnosed.
I was 25 at onset, 2 yrs later to diagnosis, and the early meds made me eat voraciously and not sleep much…. Eventually I got a better balance with it all but always a higher BMI than I’d like until more recently.
Most people with disabilities struggle with cyclical weight problems with flare ups, fatigue and inactivity. I think it’s so difficult and further exacerbates everything, when you want to do better to stay as well as possible.
But, we all do the best we can, as we are able to.
I suffer from auto immune diseases in the last 6 months I have had active cmv virus on top of my flare ups from RA/sle lupus / sjogren's syndrome / the latest flare up was Or like ME or MS
I’m waiting on test results from my Immuologist and neurologist
Was in the ER 3 times in 3 weeks I never have been so tired. It’s felt like I hade a nervous system seizure. I couldn’t hold my head up I felt paralyzed. My arms and legs felt like they were weighed down by sand bags. I could feel the nerves so fire off throughout my system. My calves still cramp and I have very mild after math symptoms. But nothing so far like that has happened again I have not felt good since I first got vivid 2 years ago. I think my immune system can’t keep up with all the new strains and diseases. I feel like I have to live in a bubble. But then we only live once. I’m super hyper sensitive to everything so plus I’m going through counseling now to heal the past inner child. Jennifer’s documentary was such a blessing. I just barely watched it. Gosh I feel like I’ve been living under a rock. I do want to meet her and just give her a hug. We are warriors stay strong no diseases or illnesses can stop a strong stubborn soul 🙏🏼❤️🩹💞
I’ve experienced everything you mentioned except maybe the bags under eyes.
I used to lift weights and was very strong. Im a girl but was always the next best thing to a guy. Lol i didn't mind getting dirty under the car hood or running my cars through the mud. I have a hard time opening a water bottle especially when i am at a high tilt flare.i have had cfs for a year before a chiro fractured my spine. Then i had a tia. I used to be a walking rememberer of names numbers etc.. i worked in lock down mental health facilities and knew most DSM4 codes and sub codes and ICD9 billing and regulation codes. I can't remember much because of my whirlwind of garbage. I lost a lot of my hair and it grew back a different texture and in a different direction and color. In my eyebrows and other parts of my body. I still lose it and now my brows don't want to come back!! I slways look pale with dark circles now. But after years of felling like you never have slept even though you dream can put a lot of age on your face. My skin does weird stuff it's leather like or a grease ball. I used to be a professional make up artist my hair and teeth were beautiful!! Now i can't remember how to put my makeup on nor does its stick right I can't manipulate a curling iron or even cut my hair like ive done dince i was 12!! Thats gone wrong since my #4 tia in dec. I also got vovid now 3 times. So i have so many stupid labels. Me/cfs, long haul covid and automatic dysfunction.. seems like the medical people well those who try to care are understanding that they are all similar and it could be linked to a viral infection... So i hope they figure out something. Because its all compiling together and feels so much the same but so much worse that 2 yes ago. So now i look and feel like im wearing someone else's body. I used to dance too goid actually. Janet Paula, Michael Brittany and me! Lol seriously though... Now when my leg jerks when i walk im like "Thriller"!!! Ha.. ha.... Haaaa...
I have all these symptoms except hair loss and the other 20 you listed. One symptom I also have is when I walk my legs feel as if they're going to split and it feels as if the bones in my legs are being crushed inside my body. I'm a 73 yr lady who looked forward to volunteering when I retired and if I have the energy to shower I'm lucky, I rarely leave my house. I've lost all but one friend but I have the companionship of my brother, he cooks for me because I don't have the energy. In ten years all the doctors I've been to not really diagnosing the source of my pain just give me pain pills. God I wish I could find a doctor that cared. I miss living life, I'm just existing.
❤
For me - muscles twitching, mostly in my hands, weakness in my hands and arms, dry skin. Dizziness and leg pain when standing up, and of course visible slowness when I try to do anything.
Hi, Johnny! I’ve developed skin/scalp dry skin issues, eye issues, balance, startle easily, involuntarily leg kicks and muscle twitches. I must recline and cannot sit up for long periods of time. Brain fog..
Thanks for sharing!
I am to be assessed on Monday
I'm just two months into this. Dysautonomia, gut issues, bags under my eyes that weren't there. I can physically do things but my brain is so tired. I can't concentrate, short term memory is a problem. I can forget the point I was making when speaking. Light sensitivity. Haven't been diagnosed with anything yet. I used to workout and play basketball 2-6 hours almost everyday. Now I can't work too dizzy and can't think.
A hallmark symptom of ME is PEM. Post Exertional Malaise. If you become significantly worse after physical activity and dont recover from resting, I would talk to a Doctor about M.E.
I’ve had this since 1988 after contracting “the Cambodian flu” on a plane. Then 2 yrs. of Dr.s poo-pooing me and taking all the flu shots. A naturopathic Dr. finally diagnosed it as “EBV” in 1990. I went to some teaching seminars which were vague at best, but at least I hooked up with my peeps and found out I was not alone. That alone was very healing- I found out at least that I wasn’t a hypochondriac. NOW after the cooties-19 and the “thing” (which I refused) it is all coming into the light THANK GOD. I just started B1 & the magnesium and I ALREADY FEEL BETTER ❤️🩹 BTW I am 71, female and have had all the symptoms you describe. TY for this channel‼️🎯
Do you use wheelchair? I have got my first one recently to save some energy and if possible get out of the apartment. I only tried it indoors so far. But I get so nausous from it😢 I never thought I would get so much worse so fast, this sickness really can change quickly.
I can barely stand up after 17 years with this disease...from sheer pain and weakness/ the doctors where I am have turned their back on us...so yeah to thrive one must do what they can in the midst of pain and total lack of understanding from anyone and everyone.
Also I have lost my family and friends has that happened to anyone?
I think most people have lost friends and family to some degree due to this illness.
@@Anchor7 Thank You
I've def lost friends and have strained family relationships.
@@fight4me747 That makes me Sad
Related to Asperger's hypomobility I've found out having it 26 years though I was born with fatigue
Yeah. Definitely. I ve been experiencing all of these symptoms in the last miserable decade which i ve been having cfs, lyme, cirs and so much more 😮💨
I have CIRS too
@@fight4me747 i see. I think cirs and cfs often go hand in hand 🤔 much of the same physiological stuff happening: lymph /detox issues, mitochondrias disfunctional, etc 😶
Hi i love your videos i would say ive lost my strength looks energy happiness and hair . Its such an awful illness i too struggle with vertigo balance issues . I run into door frames all the time.
Its def a tough illness.
Would really like to hear what helps against the muscle twitching. I have them all day long throughout my intire body.
Magnesium and epsom salt baths helped me
I've been living with ME/CFS for 16 years, at a moderate level. Does anyone else feel like they need to lie down at least once a day?, not to take a nap but the need to be in a horizontal position for at least a few minutes to be able to go on with the rest of your day? I don't suffer from POTS or anything like that, it feels like my head is getting heavy and I have to lie down. It could be a muscular issue I guess...
Sometimes I can't sit straight at all because my back muscles are so weak and begin to spasm, I also have hour long episodes of my limbs shaking especially my legs
I have similar Symptoms as you. I also have Muscle Wasting, I did have a muscle biopsy which shows that my muscles are deteriorating siterating some. I have been diagnosed with ME/CFS, Fibermyalgia, POTS, Automotic dysfunction. Once a month I suffer from severe vomiting and diarrhea For at least 48 hours. I do have digestive problems problems and can only eat certain foods. I Can relate to muscle Cramping all over the body. I have only been diagnosed with this for the last 3 years. I also suffer dull headaches it's at the base of my skull skull in the back I do not understand what this is and had several MRI's And nothing I am not sure if they are actually actually going down to the base of my neck with the MRI's.
Such a rough illness.
@@valentinaruseva7612 how do you get checked for this
Oh ya and now i can't take meds! Everything makes me sleepy or dizzy!!
Hey there, I'm seeking a niche treatment. Have you checked out Floxed by fluoroquinoles (specifically Cipro or Lavequin) and cervical spine instability/distructure at caring medical.
I have heard of cervical spine instability.
@@fight4me747 It can cause Vagus Nerve degeneration which causes a myriad of symptoms, I discovered that I related more to this issues. Post exertional malaise started to make more sense when I explored these conditions and ligament laxity, seemingly my most prominent issue
How do you exercise? Do your hands around the fingers or legs around the ankle get pain even days after working out even when it's like only flexibility exercise on the leg (and not even hard ones)? Do you also kinda have vague pain around your center right of abdomen? Do you have coughs at night after eating certain foods? Do you also have like language problem like you put the verb first before the subject (both in typing and speaking)?
I do not exercise. It causes serious flares.
Check out cci aai, hypermobility syndrom in the ligamenta alaria....my son had cfs because of this! And there are regenerative treatment for this problem. Maybe it is something different, but check this out!
Sorry for my english!
Will do, thanks
Your english is fantastic❣🥳
❤❤❤
Have had M.E for the past 32 yrs and it could have been me doing this video clip ! one thing I have not had is my hair falling out ,though I use to color it for yrs until one time I had a very bad reaction ,it started as small pimples but they grew and felt like hard plastic (any hair I had where this popped up fell ) stopped coloring my hair since then.The bags under my eyes look horrible . I'm a female and got M.E after getting infected with Epstein barr virus.
Omg! This is so me…
Dude I’m a marshmallow 😆 because of so much muscle loss. I saw someone else mention being extra sensitive to cold and I had attributed to all the muscle loss
Tinnitus... 😣😣😣
Weight gain
You are such a sweet soul!
I pray for your recovery!
Crispr tech will help alot of us.