Thank You!!! That sounds rough. I share some symptoms but due to CPTSD. Take as best care of yourself as you can. I hope that you have support.

Listen Here !!!! You are describing symptoms of Lyme Disease

Panic attacks nightmare exhaustion ……‼️ 9:45

ALL PETROPHARMA CAUSES ALLERGIC PROBLEMS after a while ‼️ 12:16

IN BELGIUM 🇧🇪 THEY DON’t NOW WHAT TO DO WHIT ME , Sir ❤️‼️ 13:29

I had to learn to be satisfied with who I am, to focus on being, not doing. I could become bitter and focus on my horrible situation, or force myself to find little things to be grateful for...at least I have a bed, I have running water, I have a blanket, etc.

​@@cherylallis2458you singlehandedly made my entire day with your comment. Going into month 3 on the bed and today is really bad. I am literally so weak and falling asleep all day. Thank you for reminding me of gratitude. I don't have any friends or family I can call...I will reach out to my son later, but I am so grateful for my bed as well and my sweet cat sleeping next to me. I have so much to do but will try to be kind to myself. Thank you! Feel better soon!🪻🪻🪻🪻🪻

@@SweepDailyWin ❤ kenne ich, wenn niemand da ist … 😢

Yes! I feel like you just described ME! I think the guilt is the worst! I have a wonderful husband and family and they try to understand and give me so much grace but I feel so guilty ALL the time!

Cabin fever especially when the weather is nice. After three days of staying inside I have another bunch of errands and then wham down and out again. Same shit every week and doing one errand or two each day still endsupin a crash *sigh*

I keep thinking it will kill me.though. How is my body holding out? Its a mazing really :).

Yes, this! 😢😂

I get it,but I had to realize that if I go push myself and keep doing that I will die

Absolutely! And my partner - who was my caregiver, died suddenly on me too! He was only 30 years old. I miss him so much. He was the humour, the sunshine in my day. And now that he's gone, CFS and isolation is all that I have 😞 Strength and compassion to everybody that's going through this! Seriously... 💪❤️

The bad news is: ME does kill.

You took the words right out of my mouth, mate. In fact, most days it feels like worse than dying, 'coz it's like having to suffer through the slowest form of death, but yet never dead, nor living either; more like a zombie than a person.

❤💔❤️

The best way I have found to describe it, is that it's like being allergic to life and everything in it (-_-)

I know that feeling well. The dramatic reduction in the sensation of "life force", "your life force is drained out of you" is, in my patient-informed opinion, an accurate one that reflects what is happening at the level of cells throughout a CFS/ME patient's body given what Robert Naviaux, MD and others know about Cell Danger Response. The cell adaptations out of "everything's okay, vigorous living mode" and into "DANGER DANGER, shelter in place, turtle-pulled-in-to-the-shell-to-survive-danger" mode result in the dramatic curtailing of the ATP production rate and thus cells are starved for fuel to do more than the bare minimum to survive, resulting in "drained life force" feeling DRAMATICALLY lower cellular vigor/ work capacity for operations, defense and repair. A body made up of cells that are struggling in these ways results in a life of agonizing, bare *existing*, not healthy, vigorously, joyously *living*. . It's a horrific taste of what it's like to live in a body in extreme old age. . There's one silver lining: I'll never take the health of my body's cells for granted ever again. This horrific experience has taught me how vulnerable they are.

That’s exactly how I started thinking is that I was slowly dying! I’m going to try a CFS diet and see if it helps because I can’t go on this way.

Thank you I REALLY needed your comment

@@kateskeys Take care of yourself. It’s their problem not yours.

Take care of yourself first, especially if no one else gives you compassion.

I agree with you but, I find the loneliness of losing that closeness I used to have cripples me. I try and look after myself but, at the same time, I actually 'need' them. If only I could ever really get them to understand it.

@@santipolo1963 I need them as well however they will be without me if I don’t care for myself. Love them dearly. But I can’t force someone to understand something they are not interested in. They see the difference in my actions of how I’m taking care of me.

Kathy,Be well 🌹🤗

Your symptoms sound a lot like my grandma. She was diagnosed with fibromyalgia but the big things she struggled with was sensitivity to smell and to medication side effects. She was also sensitive to cold and hot. My family wasn't always understanding but I was pretty much attuned to her symptoms. I could tell when she was pretending to be ok. They always said all she did was complain but what else is there to do when you are that miserable all the time and no one believes you 😢

@@Childoftheking89 💙

I can't express enough how I feel for your plight. It's beyond my ability to understand how most of your adult life has been lost, and the torture you've endured. I'm so sorry for your loss. I hope at least you've had someone in your life to help.

I felt this!!😢

Because you aren't get the REM part of sleep, that allows for you to feel refreshed and well rested.

Well said.

Sehr gut beschrieben, so ist es auch bei mir. Und dann noch die vielen Entzündungen, Allergien, Krämpfe, Übelkeit, … 😢

Spot on. It is scary, but have discovered that it is a mitochondria dysfunction along with fibromyalgia. I have monthly B12 injections, activated multi B, amino acids and some herbs etc. Good to go to a doctor who is into functional medicine if you can. It seems to be a mitochondria gene defect that causes it. Would be a good place to start if you are able to have the gene tested. It's not cheap, but perhaps insurance companies with the right cover, might cover it.

@@patriciamaclennan5634 hi, Patricia ~ thanks for sharing. I 'Googled' mitochondria + ME/CFS a few days ago, and found a paper that indicated at least some of the medical establishment IS finally beginning to make some connections btwn adult-onset mitochondrial dysfunction and ME/CFS... Tho they haven't, yet, NAMED it as a Syndrome/set of inherited dysfunctions. (Ie: LHON, **) IF you'd like me to send the link, reply and I'll get back with it. I agree, that if you're able to get the mitochondrial (mDNA) test covered by your insurance, do it. It certainly will cast light on at least PART of the health issues you're dealing with... specifically those related to how/where *your* broken energy production is broken. I was fortunate to have decent insurance that covered my test in 2009, bcuz my mother had been in ICU for 6 weeks, and eventually was diagnosed with TOXIC METABOLIC ENCEPHALOPATHY. (I thank God, we DIDN'T heed the Doctors that encouraged us to pull the plug on her! Instead, I asked for the name of a Neurologist they'd want their own Mother's to be seen by, then INSISTED on getting HIS opinion, even though he wasn't "on staff" there.) While Toxic Metabolic Encephalopathy, didn't bring a great prognosis, it gave the Doctors something specific to fight! And, THAT diagnosis pointed my sisters and I towards her/our acquired genetics. (mDNA) [**At the time, I was told they may have a 'name' for our group of disorders within the next 5 years or so. It's been 14!] BTW: a few of the genome/ancestry sites have added mDNA testing to their offerings. I'm not sure of the cost, or how specific these tests are... they may offer an alternative for those whose insurance won't cover. Thanks again for sharing. .. If you haven't already visited MITO.ORG, you might take a look. They have tons of information about energy production disorders. Take care. NB ****

So true. It changes EVERYTHING. Absolutely everything. It's a constant negotiation. No more taking for granted that you can walk around the block, or across a parking lot, let alone clean the whole house (or yourself!) some days. If you aren't familiar with the concept of 'spoons' as an analogy for energy expenditures ~ I came across "spoonies" while searching for coping skills and life management for those who are living with debilitating and chronic illness. I found some helpful information . Especially as a tool when trying to explain to others HOW DIFFERENT things are for me now. Hang in there. NB

Chemical sensitivities are a huge problem for me . Exposure can set off all the symptoms mentioned plus.

@@peaceswirl Yes! I get serious headaches for weeks after a trigger, too. Hydrocortisone orally helps calm the headaches some.

@@peaceswirl Of all my symptoms, even fatigue, MCS, multiple chemical sensitivity, is the worst!! It affects what I eat, smell, ingest, and apply! Medications that I may need, I cannot take. I can’t even go over other people’s houses because most have artificial air fresheners. Now that wearing a mask has become normalized, it has been a blessing.🔅

I started a KZfaq channel and this actually happens on my videos. Often it sounds like I have no command over the English Language.

@@peaceswirl - Yes and the facilitation of widespread sanitization over the past few years has been hellish triggering allergic reactions - there seems to be no escape.

Yes! I never knew before this that such an intense fatigue existed! I told my dr I didn’t know exhaustion could literally be painful like this!

I stopped calling it "fatigue" a year or 2 ago. That's exactly what this is: "Exhaustion." Everyone has been fatigued at some point - but not everyone has "Chronic Exhaustion" & pain, 24/7.

When someone says it’s tiredness and they are tired too I say: ” oh so you can’t walk to the bathroom either. I can’t shower either” . Shuts them right up after a look of astonishment crosses their face😂

Amen. I am so over people telling me I am lazy and just need to get off the couch. If you’ve never experienced the depth of the daily exhausting while trying to functions in a hyperactive world, people just assume it’s just we need a nap, need to pace better, get to bed earlier etc. But I am over being made fun of and being given suggestions of how to perk up my life.

This sounds like vitamin deficiency, what's the difference?

Spot on.

True, they almost never get it even if they have great intentions

Noo

Very true. Plus, most of us don’t look sick and every chance we get( a “ good day” comes along) we make a monumental effort to do all we can in spite of our overwhelming symptoms. So we are judged by that one day when people see us acting “ normal”. They assume that the rest of the time we are taking being sick. They don’t see the PEM we suffer after exertion.

@@penelopelambson6794 amen to that!

I’m just discovering this disease I have been struggling with symptoms for like 3 years.. I can’t imagine the journey you’ve endured that long 😞 I got checked at the hospital for low iron etc. and basically gave up after that like… well nothing is wrong with me even tho there is. I’m going back to the doctor again

I have body buzzing as well. Feels so weird!

How would you describe the body buzzing? I think you might just have given a name to the sensations i have and which i find utterly difficult to describe...

I thought I only had fibromyalgia... I think maybe I have this. I have all the symtoms you mentioned. Sending love to you ❤.

@@jolinalindell3922 are you hypermobile I had CFS before fybromyalgia or is it still cfs

all the time

Daily...you are not alone. What a horrible feeling

I was like this in my worst. I wouldnt want to leave home because I was scared I would have a panic attack in public.

yes all the time

I feel like I’m melting into the floor when this happens. =(

Low blood pressure

Sounds like your talking about my life🙄

22. Extreme pressure in the skull. 23. Unexplained anxiety. 24. Extremely hard to think. 25. Symptoms that resemble ADHD 26. Pressure around and behind eyes. 27. Night sweats 28. Mast cell activation syndrome or just sudden sensitivity to food, perfumes, soap etc.

29. Orthostatic Intolerance - is another symptom that doesn't always require POTS or elevated heart rate. I suffer severely from OT, but my heart rate stays within the norm. It's so bad that many of the other symptoms worsen while sitting upright or standing, and the symptoms only reduce when lying down. It's linked to low blood flow in the brain Fatigue , is more than the standard fatigue healthy people have, I'd call M.E. fatigue "Overwhelming profound disabling extreme fatigue and weekness"

30. (I forgot) I sometimes have days-weeks when I feel like my neck or/and back is/are extremely stiff. And sometimes it feels like some of my bones are on the verge of breaking, or like a bulldozer have run over and broken my back into tiny pieces (I’ve broken an ankle before, and it’s the same feeling/pain). 😐 I am also diagnosed with Hypermobile EDS like many others with M.E., so the symptoms might be explained by the hyper mobility (like many of the other symptoms).

I sincerely thought I had cancer , I was so convinced of it . I thought it would be terrible to just die and not have told my family, so I did. My dad went into a coma shortly after that. Its only when I didnt die and nothing changed that I began to accept that I might be wrong. I didnt get tests because I havent seen doctors for years because I gave up on them. I wouldnt want their treatment of chemo anyway . So thats why doctors werent /arent part of the picture.

Funny you mention going to the ER because I did just that! When this illness first began I was a very healthy/fit young person. After a mild cold/flu type illness I was struck with an unrelenting level of fatigue and muscle weakness that I had never experienced. It just would not alleviate and I was struggling to attend a couple college classes or even just hang out with friends. I remember thinking for sure the ER docs were going to tell me I had leukemia or some deficiency, but they couldn’t find anything wrong and told me to follow up with my primary dr. Well here we are 15 years later. Still no answers, still suffering and the worst of it all is the continual dismissal from drs and family.

@@smakkdat That is the worst when even your doctor doesn't want to believe what you are feeling and put you through a myriad of tests that come back normal, so frustrating!!

yes it does feel like i’m poisoned

great answer

That is an infuriating reaction from a doctor

I had that reaction from a dr, she ran an ana titer and then after it was positive dismissed it as x% of positive have no symptoms at all....like then why did you order it and I must have had symptoms fir it to be ordered in the first place since you need icd 9 codes when ordering tests you can't test for no reason. She ended up leaving the clinic, 5 years ago still no new primary anyone I have tried is worse and I get such anxiety and fear that pushes me away from going in but I can't work and without documentation ssi will deny me. The pain clinic I go to cut my pain meds because that is their goal no matter who the patient is or what is wrong. My trauma therapist left the clinic, no ptsd therapy since just a young girl still working on licensing who smiled while asking me to walk her through my panic attacks. Now no one. My body pain I see no one as I go to pain clinic for a work injury 10 years old. I had been improving then got worse last few years...only thing I do not have is swollen glands, at least never said by a dr. But because symptoms have come at different times and not all at once they are treated as all separate and not all from same issue. Like migraines have been here 20 years, body pain after back injury but 2017 I was told fibromyalgia because my back hurt when he touched tender points. And he basically said don't bother trying to get social security he does not help. We are going to be homeless and I can't work, I wish I could. Grocery shopping for the bulk of the month, food stamps, I was in bed for 3 days I could not move my ankles. I went to the bathroom and I made my don a sandwich for dinner, he makes a hot pocket when he wakes up. Ut because of that I had food thrown out because I never did the work to make chicken and stuff for our salads and I forgot I had a slice of cake for my son in fridge out of sight out of mind. I lose track of time now. I can type a reply to a post on KZfaq or fb and an hour went by...like what. I can't get my home clean. With my ex arrested and no contact order, he was my caregiver they never replaced him or helped with my son. My ex threatened if I kicked him out i would never get help from anyone and I swear he had to have. My case manager can't even order a bus card. She left a voicemail she needed me permission for her to order it...I did that in January she never ordered a replacement for my broken cane like she said she would. My son has his assessment needed, next 2 weeks, fir renewal. I am going to ask her how I get myself switched to a new company and how to find out what communications he had. I suspect plenty, my last assessment said something about angry outbursts, not true but my ex was trying to gaslight me and projected his anger, yet when he raged at me I never touched him never yelled never threw anything. I stayed calm. And called 911 while so afraid. But now I have no help and we are suffering. Over 3 months lunchmeat sandwiches for dinner every night. Nothing cooked. I get dizzy heart rate increases I sweat, from several minutes standing still. My ex used the new stool I bought for me to be in kitchen, put it together, thank you, then used it at his work table, hey wait a minute, then cracked the seat in half threw it out, never replaced. Card table for my son and I to eat at, thrown out as he wanted to eat alone st his work table away from my son, he would try to fight with my son physically. Did once in beginning used the he was trauma triggered excuse, but obviously not looking back as he would bait my don to swing at him so he could hit back. I blocked them every time but it took a toll. I am better today than the day after his arrest. But not doing well. Insomnia again and this morning I can't go back to bed. I somehow need to stay awake get the meals on wheels delivery bring it to my neighbors, my freezer has zero room, and then give my son a very needed bath, I need one but we don't get both on same day. That was the day of the fight. He expected me to shower cut my sons hair give him a bath all 3 on same day. Without help he got paid to help me. He never cleaned anything beyond his work area. I need to clean fir his cadi waiver appt. I feel drained of life, energy chi, can't describe. And my pain with less pain medication, because he says my brain will take over.

The "all of your test come back normal" immidiately made me want to flip a table. Im going through this right now. But looking into ME/CFS and hearing others experiences make me feel a lot less alone. And hopefully that more attention will be brought to the diagnosis and more research/funding/relief for those who suffer.

Have you been checked for MS?

If it were me, I would talk to a doctor about ruling out MS.

@@fight4me747 it's been 10 years since I have the symptoms. I checked everything: MS, ALS ... all possible neurodegenerative disease

I have these too!

Clumsiness and slurred speech and feeling as if there’s something in my throat, that I need to clear it but no difficulty swallowing

Ya its been a rough road for many with ME/CFS as you seem to understand (sorry to hear you are unwell). Its starting to look like long covid is in fact M.E. Pretty crazy.

Sorry to hear you are going through this. Its a very challenging illness.

So sorry, but so interesting to compare notes. I started with (presumed) long covid in March 2020. Fatigue has been primary, but as with you, electric/tingling skin, what I call microspasms, tinnitus, pins/needles, and VOCAL! I've been largely without my voice for 2.5 years now - very hard to function in the world without speech. Been to 2 ENTs and they just say "atrophy, do vocal therapy". But that triggers everything else - a vicious cycle! And my list is longer, too, but this is enough. Keep fighting it, one day at a time - you're not alone!

I’m so sorry to hear this. I also have the symptoms you just mentioned. Many of the neurological symptoms started the night of my 2nd C-VAX. It sure is a battle.

​@danielscheerer3032 HI there. I was also having trouble with speech and shortness of breath. I went to local ER and ENT doctor diagnosed me with VOCAL CORD DYSFUNCTION and gave me prescription for Albuterol inhaler with Nebulizer. I can use that every 4 hours when I am short of breath and have voice changes or hoarseness.

Yes exactly!!! It’s not just “being tired” it’s like when you’ve had a high fever with the flu and the whole body weakness you get where you can barely get up. U r not alone ❤

Good description - very relatable.

That should be written on a t-shirt - ha! Perfect analogy

Best analogy

I have certainly felt like I was dying, especially when my CFS was compounded with another illness!😩

@@lifewithspirit323 some symptoms have changed over decades but pain worst for me

I believe mine was from covid too 😢

@@tomsale5142 I’m so sorry, Tom.

@@lifewithspirit323 thankyou I have heds do you? Also Asperger's add not sure what's causing what getting my heart valves checked next week

Yep/bathroom every 15 monutes….. this is ongoing torture like having a hangover and someone screaming at you while you haven’t slept in several days and you’re hanging at the top of a mountain climbing gym, barely able to hold on. Even sleep is exhausting. This feels like purgatory and it’s a struggle Just to survive every day 🙏 Bless you all and may there be recovery

The muscle spasms are enraging! I have to rub ibuprofen gel into my legs to get any relief. The stomach pain has been so bad that I convinced myself that death was imminent and thought that it would be a relief.

Doctors are really quick to say you’re depressed but it takes years to work out the fatigue

When doctors ask if I’m anxious or depressed, I say, “Yes, and you would be too if the life you loved was ripped away from you.”

No depression/anxiety are not symptoms of ME/CFS. Those two are psychiatric. Fatigue, pain, can wear you down and get you into depression, but so can battling any long term health condition. Anxiety is psychiatric. If you are having then one of two possibilities, you have CFS AND a psychiatric issue or your problem is psychiatric.

@@FallenJanettv tell me about it when they cant find a reason for symptoms they say its all in my head. Anxiety. Who doesnt have it? Does it mean we should take antidepressants despite the risks and whars crazy is they dont know what tests to do to find out whats wrong.

@@SarahNelsonWA anxiety and depression are the new trendy answers drs have when they cant figure out whats wrong. Its like u have to ask and tell them what to do. Nowadays patients research and find answers thats drs have no idea about. Then they blame us for googling and reading.

Heard very similar remarks. Now I don’t really discuss details about ME/FM with most people…They just cannot wrap their minds around this illness. So, by not talking about this illness, I’ve chosen not to be confronted with ignorant insensitivity and that’s working much better for me. 😊

Them: 2019: "Oh, you're so lucky, you get to go home all the time!" 2020: "I don't want to stay home all the time because of some sickness!" Us: *eyeroll*

yep, the couch. Had my 20 year old daughter come in one day and say sarcastically 'Another hard day on the couch!' Oooo, that one hurt.

It’s looking back at our active former self that’s heartbreaking

I can relate completely!

I broke and lost quite a few teeth in the early phase of onset. Thankfully no longer

Thank you for mentioning dry mouth and its effect on teeth. My dr was concerned I was developing Sjogren’s Syndrome. I’ve had some of mine crack vertically for no apparent reason. So odd.

I wondered how this was related, and if it was. I too have always looked after my teeth. For years ive been trying anything and everything. " this really might work, worth a try! " . I too have had three crack vertically. Indeed... The grief, I wasnt expecting that. Its exactly the experience. I dont have a social life anymore, at all. Because of my embarassment. I wont get fhem fixed because Everything ive done to make anything better has done the opposite. The last visit was fo get a bridge thing. It broke two of my teeth. And....the nexr dentist was audibly disgusted at the state of my teeth. I should have sued the beeach, the technician was a witness, but Id rather just go to sleep.

It is a serious illness, have you been drinking the kool aid? Its worse than cancer because cancer only lasts for a few months or a couple of years and then death frees the victim from their suffering.

Always remember how important it is to speak to a doctor and get other possible causes ruled out. Many of these symptoms could also indicate other conditions which might be treatable.

I relate!

@estherdavidson7959 Please also get your B12 checked as what you said is very similar symptoms to low B12 which I had and you could have that along side ME/CFS which will make it worse. ✌🏼

Hi Sister!! I'm from south central Pennsylvania, and u?

Yess Jehovah, our creator, will restore our health.

hi sister amen for sure. from florida

Sorry to hear you are on the more severe end. Thanks for your comment.

Katrin,Although we are about 10,000 miles apart we have alot of similarities,alongside a plethora of other illnesses.Also,i have no family or friends anymore(as soon as anyone realises how badly the M.E symptoms are they disappear,Female and male )so at least it shows the calibre of a person and gives me more energy to devote to myself.There's always an upside.Also,We have our own M.E family in this excellent channel! I think finding something you love,makes you happy and are passionate about helps;no matter how small.Hope you're as well as can be.You are not alone .Much love from the U.K.

Thank you so much for this. I really appreciate your videos

❤bless you

My heart goes out to you. Thank you for your lovely, supportive message. We are a unique community, for sure. We feel one another's pain, and we empathize .. Because we deal with and struggle to manage SO many things the rest of the world takes for granted ~ we have compassion for one another. Sometimes I doubt compassion is even on the rest of the world's 'radar', and it makes me sad. I'd take my old abilities back in a heartbeat, but I feel blessed to have found that there ARE still caring people out there. PEOPLE like you! For that, I am grateful. Hang in there. 🤗

It could be worse. I also am going blind ,( Im an artist and designer ), and I live with a complete tosser and cant do anything about that. He is a covert narcissist . Boundaries are very triggering for him so its a toss up between looking after myself and not being abused. Because of him, My body constantly makes lots of cortisol.and adrenaline and my heart races. It began with occassional episodes but since a hear its been constant. My body is exactly as one would be if you were hiding in a cupbpoard from someone looking for you to kill you.

I've been diagnosed with fibro, what is is different with cfs/me? Or are they the same illness

Throw some Lyme disease on that, that’s me in a nutshell.

It is now called SEID--Systemic Exertional Intolerance Disease. When I tell people I have this they are like, Wow! I've never heard of that. I tell them it's real bad, and they don't argue with me like when I say chronic fatigue.

Some 'specialist' produced a video about CFS & FM . . it lasted over 1&1/2 hours!!! Impossible to watch. You have to laugh or you'd cry.

I so agree with all you said ....❤❤❤

LoL that's accurate

Sadly very accurate.

You obviously have a keen storytelling ability along with a good sense of humor. Thanks for a pretty perfect summation!

Just perfect description!

35 years of that and at 88 am told how wonderful and beautiful I look. I smile and listen to other bitch but I YAWN AND GO TO BED AND LIE THERE NOT MOVING pain pills only made me dizzy and nauseated. I am surprised I am still alive and smiling.

Not deconditioned! ME, severe asthma and COPD... all finally diagnosed after I went on permanent and total disability. The fatigue was attributed to dealing with my orthopedic dysplasias from birth. At least I was believed because of them...

Not every cancer is visible, though. Neuroendocrine Tumors dont let you look ill, but fatigue, diarrhea, heart issues, flushing, immune system issues are a regular theme for someone with NET cancer.

I can relate, it’s SO hard not being able to be the mother we once were. 😢

I cried when I read your comment because this is exactly how I feel.

I understand this completely. I feel like I constantly let everyone down. My husband works all the time too and I have no other family to help me. I have 3 kids as well, which 2 are older but they also have health issues which I have to suck up mine for them and be there for them. I push myself more than anyone could know. My 17 yo just graduated and going to graduation plus having her a get together afterwards did me in more than it should've. I'm still trying to recover from it. No one gets it til they get it....

@@artandrea5348 I hear you. My eldest is graduating high school in a few weeks and I don’t know how I’m going to do it. The hardest part for me is hearing my kids say I know you can’t come because you’re sick but it would be nice if you could. Breaks my heart every time I have to say I can’t make it for something.

Those could be autonomic symptoms, which are potentially treatable. The Bateman Horne Center has good information on autonomic dysfunction.

Agreed. Though ME/CFS does not always originate from a virus.

I am not sure that works as, some sufferers may suffer and have not had any virus infection, that is just one of many possible triggers. Certainly I do not like CFS at all as a descriptive and prefer ME for no other reason than it sounds more medical. The best banner headline for it is that it is a neurological condition, a problem with the human messaging centre.

​@@santipolo1963 We're trying to solve a PR problem here - and an unpronouncable scientific name only feeds the perception that that the disorder is a fabrication trying to dress itself up. And I suspect that ME/CFS/PVS is only brought on by viral infections. Don't forget that not all viral infections trigger manifest immune reactions.

​@@santipolo1963Indeed. ​Post-viral for many but also causes may include exposure to toxic substances (mold being one), highly traumatic events like a car accident, brain injuries, etc. A neuro-immune condition.

Hey Kavita, Im sorry to hear that you are struggling. Severe M.E. is brutal.

I am so sorry for what you are going through..😭😭

I had the severe neuropathy as well. Antivirals and B12 shots helped, but a game changer was Hako-Med treatments. I did 20. I am hardly ever in pain at all. Just annoying level when the weather changes. My neuropathy had traveled from feet and hands throughout my body I to my face and even my tongue. MD refused to prescribe ANY pain med. So blessed that a friend of mine told me about Hako-Med. It was covered by insurance at a different doctor's office near me.

@@cherylallis2458 hey Cheryl, thanks for your reply. Severe Neuropathy SUCKS. I GOT IT IN MY MOUTH. HAD TO HAVE AfTER 3 years, All my teeth removed at the root. Sorry you have Neuropathy. It can be crippling for sure. WHAT IS HAKO MED? Thanks

@@mtktkt3773 thanks for your kind words

So you should congratulate yourself! Think of yourself as a L’Oréal ad “Because you’re worth it. “😊

I also get that sniffly nose, blocked sinus thing that feels like a cold is coming,along with excessive sneezing

@@skinscapetattoo yes had to have sinus surgeries.for this but I've found out I have Asperger's and hsd and add genetic effects histime in the body

Emotional lability is a big issue with me.out of control emotions and emotional vulnerability Thanks for the conversation

Thank you! I have a strong opinion that my ME was triggered by SSRI withdrawal, and I did it over a six month period. It was Paxil, known to have among the worse withdrawal symptoms, and I felt like I was going crazy. Always good to hear someone else with a similar situation. Blessings on your recovery!

Yes, psych drug side effects triggered my ME and withdrawals finished me off. Not sure I will ever recover until I have recovered from the chemical neurotoxin damage.

Oh, and constant infections! Colds, throat infections, chest infections, conjunctivitis, sinus infections, candida….

Yeah that is totally me - the experience of infections and the kick-back. Also completely sympathise with the bit about being judged a hypochondriac - very depressing. Good for you for keeping on keeping on and doing stuff with your life. I became a painter which works well with the altered life rhythms.

Buzz, it’s just the opposite for me! I contracted h-pylori on top of CFS, and it almost took me out. So glad I’m still here.🌻🥰

Whooow thank you sooo much for your comment, this is something I noticed within myself but I thought I was crazy because all the docters and medical experts look like they have seen a ghost if I seek help for my symptoms, what you just said helps me so much in validating my own experience in this world where there is no recognition for it.

I know, it's totally shite way to live. Hang in there though - there has been a very rapid uptick in the science on this and there should be some new approaches coming soon (ish).

@aliceandrea7863 please don’t give up! I’ve only had this for 7 years but it is so hard sometimes. I can’t even get a diagnosis but I’ve been learning how some people change their diet and it might get better. I’m starting tomorrow with a CFS diet which is mostly healthy eating with no processed foods and no sugar. Maybe we can start together?

❤❤❤

"No wonder youre Ill, look at your lifestyle! You never go out, you stay up all night. . "

What is m.e

Posture, thats one I always forget to mention.

❤ From Belgium Put yourself first. Don't give up please

I get the feeling my bladder is full to bursting but when I go wee it’s just a trickle

Yes all of these too. It’s brutal.

I feel they are different conditions, both neurological (basically) but different. With IIH, which my daughter has, much of the issue is pressure build up. In her case it is consultants who don't take any notice of her symptoms or of eye pressure too (UK)

Hey !!!! Find a Doctor that knows about Lyme Disease

You might care if they told you everyday for years on end.

This is a long shot since it's an old post but I might have something that will allow you to enjoy music again (I have all symptoms listed plus some, I also was not able to enjoy music). The fix for me was... THC. In CA cannabis is now legal and when I take a low dose (generally a 5mg gummy) I am able to enjoy music again. Not saying it would work for everyone but it sure is a nice change when it does.

Have you got hypomobility

Oh my gosh! Me too! That explains it! I thought I was losing my because at 49, I normally am hot flashing.

Yes!

Shockingly there are more people with M.E. than MS. Yet, most people have never heard of M.E.

❤

I have "kinda sorta" gotten over it. It took a nutritionist, $800-1200/month worth of intensive vitamin/mineral/hormone replacement supplements, several somatic based trauma therapies, Rolfing (aka structural integration), and I finally kicked every single person out of my life. (Not that every single one of them was "toxic" per se, but it was when I realized that having them be around while having any expectation they would demonstrate any kind of empathy was toxic in and of itself.) It took daily sunlight, exposure to a lot of germs in the soil, and a conscious effort to say NO to absolutely everyone and everything. It took me ten years to crawl out of the hole, and I've been holding steady so far for about 5 years. But I am still religious about sleep hygiene, give myself 9-10 hours of sleep, and I avoid people and social activities like the plague.

Me every night

Yes, its often like that for me too. Counting backwards works almost always, the problem is that I forget about it. I just lie there wondering why Im breathing like that and why my heart is so over actice and what on earth is that trembling, and is it trembling...am I going to die? The I get up and finish my knitting so that someone can use what I soend days making insfead. Of throwing it away . :)

Oh yes, one day I've described my conditions as 'a chronic hangover'

@@SuharikMetalI haven’t been diagnosed with anything but this is exactly how I have felt for over 15 years. Every day feels like a hangover.

@@xAWTxREDMIST same. No diagnosis and 10 years of suffering. Did you try to figure out auto-brewery syndrome? If you have that hangover-like feeling, you should definitely check it out. Not my case tho. I even did the special diet, felt a bit better, at least I did not sweat like a pig all the time, but nothing life-changing unfortunately. Well, I heard that paleo-diet, meat-eater approach and stuff also could help with CFS symptoms, so idk, maybe it was the case

Well said. It took years before I learned to stop fighting a crash and now that I listen at the early signs of crash I can recover much more quickly than in the years I resisted until my body took me totally over…. listening and checking out as early as I can for a rest has been a god send learning. Thx 4 sharing this important reminder!

Worsening of pre existing conditions is def not talked about enough.

I think I can speak for all M.E. and MS sufferers...We really appreciate friends like you.

Truly appreciate you for supporting your friend ❤

You’re such a good friend.

You know, just acknowledging the reality is enough and maybe laughing along to the brain fog, sharing the coffee making and so on. To me, feeling like we are in this together is the best help ever.

​@@santipolo1963Im in this with you, Love and understanding to all of you!❤

I am so confused, at 60 here in England my experience is that at 'my age' all these things I have experienced for at least a decade, are normal and, as someone of my age I get very little respect

@@santipolo1963 For a deep understanding of what is happening, politically and spiritually. the Benedictine Brothers explain. See "Is the World About To End?" Type MHFM, then scroll to Vatican Catholic.

Im really sorry to hear this. I hope you keep improving.

Same with me, it all came from having COVID. On top of all this a struggling to accept that I am a shadow of who I was I am also looking after a 15 month old baby and people can't understand why I struggle and get overwhelmed and need time alone

After covid here too

I began having very bad symptoms after the vaccine. I wish to God I’d never had them. They’ve never gone away.

@@borleyboo5613 what symptoms do you have?

Me too. I think they're the same thing

​@@danianderson2268In some ways they are similar, but they are not the same. I was diagnosed with Fibro as a kid and didn't get ME until my twenties. With the Fibro, the fatigue was nowhere near as crushing. Rest would always make me feel better eventually, but no amount of rest makes me feel better now that I have ME. And now I get PEM (post exertion malaise) which means heart and stroke symptoms so bad I can't move, can't speak, and have ended up in the hospital several times. Again, never happened when I just had Fibro. My mom also has Fibro and not ME and she doesn't experience fatigue to that level either, she rests for a bit and is ready to keep going. She can do more at 66 than I can at 33.

My father had it 10 years. I think it's trauma related, the system is hyperactive, no rest. He healed in 2005, still here, had lots of therapy though.

Im glad you are feeling better! Yes, It is very difficult to deal with all those things while being sick.

@@fight4me747 Thanks well im feeling ok for now at least, but I had fatigue in my younger years after EBV too, so it will likely come back again at some point, sigh. The last doc said he thinks its multi-factoral which it probably is, so every little bit I can do to help my system is a step in the right direction, like if you have a bunch of things that are a little out of whack - they can all add up to make you a lot out of whack - if that makes sense. I also have hashimotos so its sort of hard to know whats causing what sometimes, but 3 years ago I felt like I was litterally dieing! its been a long and excruciating slow crawl back to the point where I can function (if i take it easy) x How are you doing?

This is a trip-- you don’t want it to be true. And everyone is telling you to get up get a job, do this and do that and you used to and CSNT pr can’t consistently so it’s very confusing and invalidating and I just want answers and knowledge and ability to do what I need and not have to explain self . To know how to get through this

I believe mine was caused by a toxic mold in my home I lived in for 10 yrs before I knew it was there. I had 3 surgeries and just kept getting sicker and sicker and couldn't wake up with literally 7 alarm clocks around my couch. Then a chiro fractured my spine and working on it destroyed me. I wasn't getting proper health care. I still have serious issues with rust, dust, and mold. Certain kinds though. I had the perfect storm in Nov 21.. tonsillitis, flu, bronchitis, pneumonia then covid. All in one month. I had both vaccs. I got again in Aug 22 and I've gone completely down since end of Nov beginning Dec 21!!!! They wouldn't give me a booster, flu shot or pneumonia shot because I am always sick with something stupid. So I got covid again in April this year! Wow now everything is just so random and I don't know if I'm coming or going. I refuse to drive when I feel so dizzy and nauseated and disconnected from my brain now body too. My boyfriend just had a total hip replacement 20 days ago and he's angy I can't go over and help him all the time or even just a few hours every evening. I can't I just can't I try but my body stops me

I use lorazepam.

@@KidCity1985 I'd sure be careful using that its side effects are pretty bad. Anyone taking it for anxiety may I recommend taking GABA instead and you can take quite a few of them until they are effective and it does build in your system so after reaching a good level you can usually maintain it with two at bedtime.

@@katb6981 I take it for nerve pain, not daily. Gaba did nothing for me.

@@KidCity1985 True Gaba isn't for nerve pain, for that I use cannabis. Thankfully I live in a state where it is legal so grow my own and make infuse it in honey. Just a 1/4 tsp helps with a lot of pain, nausea and even migraine.

@@katb6981 neither did anything for me.

I feel the same

❤ heart goes out to you…

Ahh, body jerks. Forgot that one. I have that too

@@fight4me747 - Years ago I found taking Graviola tea helped enormously, it was indicated as easing spasms in MS, I take it continually for many many years now and if I run out the spasms begin returning after about 4 days, so its a good control. At the time Noni Powder was also recommended but it tastes vile, similar to vomit, I couldn't manage it at all.

I get the disconcerting sensation that my legs are lifting away from my body when lying down

@@skinscapetattoo oh my goodness. I can’t imagine how that feels. We just got to take it one day at a time. Some days one min at a time.

Me too, worst of jerking for me is intense repeated solar plexus jerking whenever I let my muscles relax!

I so relate. Much better now though after decades. At my worst I felt so useless and I’ve been fortunate to recover enough to be mildly functional for the last 15 years. I’ve been able to offer part time community care to elderly. Lots of days I had to call in sick but it’s been a beautiful blessing to be able to offer something. I just want to say I really get how ‘useless’ one can feel with severe ME and I’m sorry you’re going thru this.

Yes, Lyme & bartonella were my infectious cause. Get tested

Hey there! I hope your family/friends can gain some understanding from the video. It definitely is a very lonely illness.

@@fight4me747 I hope so too Johnny...thank you again

in the UK it was known as Yuppy flu and that label has stuck to this day even if folk don't know the term. In the 80's it was associated with certain lifestyle choices and, of course, laziness.