I've had M E for 42 years and each year it gets progressively worse. No one understands what we go through unless a fellow sufferer. Keep supporting each other and hopefully one day, scientists will discover how to help us.
You're a warrior. I've had it for seven and it's been awful. I have also found that it gets progressively worse, despite the medical sector saying it's not progressive.
30 years for me. It does get worse and I am to the point I don't believe I'll see a cure in my lifetime. I don't try to explain it to people. I know I look lazy, but it's a fatigue you can't push through and the chronic pain drives me insane. Impossible to sleep through. It's really a hellish existence. So many are suffering.
As many of us CFS/ME sufferers, we go undiagnosed for years! I actually thought I was coming down with Parkinsons before I was finally diagnosed. For instance, just walking from the car to my front door (maybe 50') took multiple breaks along the way. Stop. Catch your breath & balance. Walk another 10 ft. I couldn't stand up to take a shower. I'd turn on the water & CRAWL into the shower! & sit on the floor to bathe. I had a toddler that I was raising from my couch most of the time. I'd sob my heart out having to sit & watch from my van while my husband would push her on the swings at the park! OMG, that was soul crushing! I my symptoms to people like this: Imagine feeling like you're running a 102° fever, 24/7. Everything hurts & burns. I explain the hand & feet burning sensation like this: Have you ever been chilled to the bone, like out in the snow. Then you come inside to warm up. That burning sensation of your cold hands & feet warming up burns a bit. Imagine walking thru mud up to your neck. Every step I take is THAT difficult. IF, by chance, you have a good day & you over exert yourself. THAT will land me in bed for 3 days. I was finally diagnosed in 2005, when my daughter was 3. Doctor put me on Neurontin, which made me MEAN as a snake! Almost like anger mania! Then I was put on Lyrica! My savior! Yes, it's a sister drug to Neurontin, but it WORKED! Been on it for 19 years. No longer balled up in bed sobbing from the pain. No. It hasn't solved all the symptoms, but it changed my life! I also tell other sufferers that there's NO SHAME in needing mobility devices. Be it a cane, manual wheelchair, electric wheelchair. Do it! Whether you're 23 or 72! Make your quality of life easier! Whatever that looks like, outside of breaking the law. Get a GOOD doctor who has a decent grasp on CFS/ME! And BELIEVES you! Don't be afraid of firing a doctor that's not helping you! Advocate for yourself. Don't allow ANY doctor to treat you like you're malingering! Or send you to a shrink, cuz it's all in your head. That's the old way of thinking. We've come a long way in the past 20 years. Good luck & MORE good days than bad, is my wish for ALL of us! Pace yourself. This is tricky stuff. Soft hugs 2 all, Rose💜
@@traceytrotter9934 I force myself to walk 20 min every day when I wake up; it relieves spasticity and improves circulation. I get at least 8-9 hrs sleep, but more than that has the reverse effect. I saw a HUGE improvement when I cut out sugar and starchy carbs (my bloodwork improved dramatically and I lost 60 lbs in the process). Finally, do at least one thing daily that brings you joy (gardening, music, painting, writing, crafts etc). This may sound trite but these things truly helped me a lot.
Been feeling like this for twenty five years and have never met anyone that actually understands whats happening. Even my wife doesn't get it, she thinks I'm mostly fine and gets upset when I'm not up to doing chores :).
I've had M.E. for nearly 40 years. When I first got it (early 1980's) everyone thought I was faking because it was unheard of mainstream. I developed M.E. after a severe allergic reaction to amoxicillin and it took years to get a proper diagnosis because even the doctor's thought I was making it up. One doctor who was interest in general medicine as well natural realised all of my many (many) symptoms added together was M.E. and even though there is no cure the relief in being able to put a name to this was profound. I have learnt to cope over the years with a lot of dietary and environmental modification and lifestyle changes - symptoms come and go in frequency and severity but it never goes completely. The most important lesson I've learnt is to be kinder to myself and not to push through for someone else's sake because you just end up feeling wiped out for longer.
Because the symptoms are all over the body pain and different kinds, it is embarrassing to describe to doctors. One used to feel quilty because of sounding like a liar lunatic. It was good to hear you say that's symptom number one. At least now we know of others in the world with it. The pain and fatigue that no one understands except we who have it.
I've pushed through and then pushed through again. Those around me won't take the pressure off, won't share the load so it's all me and ME. I'm starting to feel that this time there might be no coming back. I'm bouncing on the bottom barely coping. I could say no but then, my kids with special needs are left to the mercy of others who look for the cheapest solution before the right one so, I have to take charge. We've currently got my MIL visiting from Philippines. I'm at home, husband at work so, I'm expected to look after this wonderful 85 year old. Even if she doesn't need anything my mind is racing in case she does and, of course, that's also depleted energy. I'm writing this during an IBS flare, I'll spare the details but I'm a captive audience right here! Audio and light sensitivity is through the roof. It's 8pm and I'm heading to bed. I'm done, finished, for for nothing. When I get off the toilet that is. Tomorrow I've another busy day caring for my daughter. One day, I suspect soon, I'll crash one last time. Is that right? I'm already in a permanent crash, What's after that? Whatever it is, is what I'm heading for. I've my own channel from a UK perspective which, ironically, I'm not able to add to just now. Thanks for the sacrifice in keeping yours active.
Spot on as always.Thanks so much😊Its so reassuring hearing you explain as you do,we're all strangers Worlds away from each other,yet totally get it like no one else.Its a hell of a life😢we can only hope for a significant breakthrough ASAP & to find a decent Dr.❤😊
Finding this hard to put down head very foggy 29 years with it days when you feel a little better you can get anxious if you go out far because it can change in minutes to feeling very ill then you have to get home panic sets in it can take a long while to recover a little bit to what level you do not know every day you do not feel well take care all with this illness
I am 76 yr old been dx in my 40s. I gets worse every year. I hardly have the energy to go out. I think about it and want to but do t have the spoons to do it. I have been getting more and more depressed and defeated. Like all of you I have tried everything and have fought every day but I am tired of fighting. I do what I can do and try not to be too hard on myself
Brain fog, migraine floaters in my eyes all I can do is go back to bed. Fatigue, exhaustion, my allergies get worse. Memory loss, no concentration. I just stay in the house while my husband takes my son out and lives life while I swap TV for bed then dead scrolling. Praying that everyone endures this and never gives up. I fell hard from a height and broke ribs it made inflammation much worse my symptoms got worse. But last month I went into remission and went down waterslides hardly any symptoms. It melts my head how I can function then not be able to function week after week.
I’ve finally accepted (I think 😂) that people don’t get it and why and that that’s ok. I’m lucky to still have a good life on the lower end of the spectrum, and it’s still crap ha. Thank you very much from the UK 🧡
Ur 100% correct I've been in moderate severe fatigue & have been especially the last few months (leaving other symptoms aside)...I have inheritance to split up of alot of land houses in south italy between me my sister & brother they want things done quick but i cannot do what they can do as they don't have me/cfs. they know I've been ill for many years but don't truly understand me/cfs they just want things sorted out.....I have to be on the property to split all the lands up then sign documents so everything's legality binding....I can't barely move around the house also the weather down here is chronic hot which personally for me makes everything totally worse....I havent talked to my so-called brother propely for decades we dont get on at all..with my sister I do but now I'm starting to lose faith with her also(altho I've been/am staying with her fam for weeks now to try stay calmish./rest up.....but at the.end of the day its all about money from all the property we have...Iits coz i lost my beautiful MUM last november....NOW THE HYENAS ARE OUT......ALL I WANT IS MY HEALTH BACK....THANX FOR THE POST JOE AS ALWAYZ👍
I went to PT yesterday after therapy I got home to sleep woke up with a nasty vertigo all night woke up this morning and I feel like a truck hit me I can barely get out of bed the dizziness/ vertigo is horrible my words get mix up pain is bad I’m just crying
Love how RUclips notified me now after 5 days. Long/Post Covid screwed me. Just like the unqualified doctors here in Germany. They have vacation, and don’t care. I’m mad that everything takes so long. Explains why I’m irritated
I am going to send this to a few people. I have lived with so much disrespect for so many years. I would love some tips on how to deal with this as it is getting worse. I am having to take Gabapentin and it gives me seizures. Thank you for your help, I am going to try to watch more videos but they make me so sad for myself. Poor me. 🙂
I wake up and take two liposomal vitamin C then chew one nicotine gum piece, take 1 Vitassium pill then eat protein like bacon and eggs and drink a little coffee, then two hours later I take a thiamix (thiamine pill) and a sulbutiamine because my specific CFS has something to do with needing lots of thiamine. Then a couple hours later I take liposomal vitamin C and stay hydrated with esentia brand ph balanced water. Then at night I take magnesium. I also keep icepacks around for pain. I'm still not ever going to be 100 better but it's a way to manage my energy and have a semi functional life in spite of my fibromyalgia and me/CFS. I have worked my way from a bedridden condition in 2019 to bring up and around and able to do light housework. Keep in mind that depending on what is causing your chronic fatigue this protocol may not help everyone...but if the root cause of your ME CFS is thiamine deficiency is "beri beri" related or deficiency related this may help. At first all I did was add b-1 and liposomal vitamin C and change my diet to no sugar and mostly protein and veggies, but later I discovered products like Normalyte and Vitassium for POTS. For me personally Normalyte had too much potassium and made me feel dizzy at times so I switched to Vitassium.
I have lympnode swelling in neck , sore throat from 2 months continuing, but fatigue has gone down since 1 months , HIV NEGATIVE, SLEEPING PROBLEM is this CFS
@@sherifrazier5899 thankyou - today was one of those days, i'm on antibiotics, my husband spent the money, no food in the house. and i wonder why i'm here.
@@sherifrazier5899 yesterday was one of those - i went to bed at 6am and it was Tuesday and i got up at 2 am today and it's Wednesday - a friend is here from out west - i asked her not to come -yet she did and refuses to understand that i just simply cannot move some days; i don't have a choice.
I get what you mean with people finding CFS/ME hard to understand, but if you have family that has seen you healthy and seen you work your arse off and then seen you just crash and they give you shit for it. That is unacceptable.
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I've had M E for 42 years and each year it gets progressively worse. No one understands what we go through unless a fellow sufferer. Keep supporting each other and hopefully one day, scientists will discover how to help us.
You're a warrior. I've had it for seven and it's been awful. I have also found that it gets progressively worse, despite the medical sector saying it's not progressive.
it's terrible.
10 years for me as well. It has gotten worse
Look up the guaifenesin protocol. It's phosphate retention, same disease as fibro. Can be reversed. Wishing you hope!! ❤
30 years for me. It does get worse and I am to the point I don't believe I'll see a cure in my lifetime. I don't try to explain it to people. I know I look lazy, but it's a fatigue you can't push through and the chronic pain drives me insane. Impossible to sleep through. It's really a hellish existence. So many are suffering.
As many of us CFS/ME sufferers, we go undiagnosed for years! I actually thought I was coming down with Parkinsons before I was finally diagnosed.
For instance, just walking from the car to my front door (maybe 50') took multiple breaks along the way. Stop. Catch your breath & balance. Walk another 10 ft.
I couldn't stand up to take a shower. I'd turn on the water & CRAWL into the shower! & sit on the floor to bathe.
I had a toddler that I was raising from my couch most of the time.
I'd sob my heart out having to sit & watch from my van while my husband would push her on the swings at the park! OMG, that was soul crushing!
I my symptoms to people like this:
Imagine feeling like you're running a 102° fever, 24/7. Everything hurts & burns.
I explain the hand & feet burning sensation like this:
Have you ever been chilled to the bone, like out in the snow. Then you come inside to warm up. That burning sensation of your cold hands & feet warming up burns a bit.
Imagine walking thru mud up to your neck. Every step I take is THAT difficult.
IF, by chance, you have a good day & you over exert yourself. THAT will land me in bed for 3 days.
I was finally diagnosed in 2005, when my daughter was 3.
Doctor put me on Neurontin, which made me MEAN as a snake! Almost like anger mania!
Then I was put on Lyrica! My savior! Yes, it's a sister drug to Neurontin, but it WORKED! Been on it for 19 years. No longer balled up in bed sobbing from the pain.
No. It hasn't solved all the symptoms, but it changed my life!
I also tell other sufferers that there's NO SHAME in needing mobility devices. Be it a cane, manual wheelchair, electric wheelchair. Do it! Whether you're 23 or 72!
Make your quality of life easier! Whatever that looks like, outside of breaking the law.
Get a GOOD doctor who has a decent grasp on CFS/ME! And BELIEVES you! Don't be afraid of firing a doctor that's not helping you!
Advocate for yourself. Don't allow ANY doctor to treat you like you're malingering! Or send you to a shrink, cuz it's all in your head. That's the old way of thinking. We've come a long way in the past 20 years.
Good luck & MORE good days than bad, is my wish for ALL of us!
Pace yourself. This is tricky stuff.
Soft hugs 2 all,
Rose💜
How did Lyrica help you? Is it just for pain?
Over 20 years, it waxes and wanes but never goes away.
Have you found anything that helps?
@@traceytrotter9934 I force myself to walk 20 min every day when I wake up; it relieves spasticity and improves circulation. I get at least 8-9 hrs sleep, but more than that has the reverse effect. I saw a HUGE improvement when I cut out sugar and starchy carbs (my bloodwork improved dramatically and I lost 60 lbs in the process). Finally, do at least one thing daily that brings you joy (gardening, music, painting, writing, crafts etc). This may sound trite but these things truly helped me a lot.
Been feeling like this for twenty five years and have never met anyone that actually understands whats happening. Even my wife doesn't get it, she thinks I'm mostly fine and gets upset when I'm not up to doing chores :).
I've had M.E. for nearly 40 years. When I first got it (early 1980's) everyone thought I was faking because it was unheard of mainstream. I developed M.E. after a severe allergic reaction to amoxicillin and it took years to get a proper diagnosis because even the doctor's thought I was making it up. One doctor who was interest in general medicine as well natural realised all of my many (many) symptoms added together was M.E. and even though there is no cure the relief in being able to put a name to this was profound. I have learnt to cope over the years with a lot of dietary and environmental modification and lifestyle changes - symptoms come and go in frequency and severity but it never goes completely. The most important lesson I've learnt is to be kinder to myself and not to push through for someone else's sake because you just end up feeling wiped out for longer.
Because the symptoms are all over the body pain and different kinds, it is embarrassing to describe to doctors. One used to feel quilty because of sounding like a liar lunatic. It was good to hear you say that's symptom number one. At least now we know of others in the world with it. The pain and fatigue that no one understands except we who have it.
i am not able to push through, my body shuts down and i start to shake and get shortness of breath. i do everything little by little.
Your voice is so clear and soothing ❤
I've pushed through and then pushed through again. Those around me won't take the pressure off, won't share the load so it's all me and ME.
I'm starting to feel that this time there might be no coming back. I'm bouncing on the bottom barely coping.
I could say no but then, my kids with special needs are left to the mercy of others who look for the cheapest solution before the right one so, I have to take charge.
We've currently got my MIL visiting from Philippines. I'm at home, husband at work so, I'm expected to look after this wonderful 85 year old. Even if she doesn't need anything my mind is racing in case she does and, of course, that's also depleted energy.
I'm writing this during an IBS flare, I'll spare the details but I'm a captive audience right here!
Audio and light sensitivity is through the roof.
It's 8pm and I'm heading to bed. I'm done, finished, for for nothing. When I get off the toilet that is. Tomorrow I've another busy day caring for my daughter.
One day, I suspect soon, I'll crash one last time. Is that right? I'm already in a permanent crash, What's after that? Whatever it is, is what I'm heading for.
I've my own channel from a UK perspective which, ironically, I'm not able to add to just now.
Thanks for the sacrifice in keeping yours active.
Another brilliant video explaining things that i struggle to explain to other people,
Spot on as always.Thanks so much😊Its so reassuring hearing you explain as you do,we're all strangers Worlds away from each other,yet totally get it like no one else.Its a hell of a life😢we can only hope for a significant breakthrough ASAP & to find a decent Dr.❤😊
Hit the nail on the head, again, fatigue, insomnia etc thank you ☺️
Finding this hard to put down head very foggy 29 years with it days when you feel a little better you can get anxious if you go out far because it can change in minutes to feeling very ill then you have to get home panic sets in it can take a long while to recover a little bit to what level you do not know every day you do not feel well take care all with this illness
I am 76 yr old been dx in my 40s. I gets worse every year. I hardly have the energy to go out. I think about it and want to but do t have the spoons to do it. I have been getting more and more depressed and defeated. Like all of you I have tried everything and have fought every day but I am tired of fighting. I do what I can do and try not to be too hard on myself
Guaifenesin protocol can reverse this. I'm on it now❤
Brain fog, migraine floaters in my eyes all I can do is go back to bed. Fatigue, exhaustion, my allergies get worse. Memory loss, no concentration. I just stay in the house while my husband takes my son out and lives life while I swap TV for bed then dead scrolling. Praying that everyone endures this and never gives up. I fell hard from a height and broke ribs it made inflammation much worse my symptoms got worse. But last month I went into remission and went down waterslides hardly any symptoms. It melts my head how I can function then not be able to function week after week.
I’ve finally accepted (I think 😂) that people don’t get it and why and that that’s ok. I’m lucky to still have a good life on the lower end of the spectrum, and it’s still crap ha. Thank you very much from the UK 🧡
Thank you. ❤
Ur 100% correct I've been in moderate severe fatigue & have been especially the last few months (leaving other symptoms aside)...I have inheritance to split up of alot of land houses in south italy between me my sister & brother they want things done quick but i cannot do what they can do as they don't have me/cfs. they know I've been ill for many years but don't truly understand me/cfs they just want things sorted out.....I have to be on the property to split all the lands up then sign documents so everything's legality binding....I can't barely move around the house also the weather down here is chronic hot which personally for me makes everything totally worse....I havent talked to my so-called brother propely for decades we dont get on at all..with my sister I do but now I'm starting to lose faith with her also(altho I've been/am staying with her fam for weeks now to try stay calmish./rest up.....but at the.end of the day its all about money from all the property we have...Iits coz i lost my beautiful MUM last november....NOW THE HYENAS ARE OUT......ALL I WANT IS MY HEALTH BACK....THANX FOR THE POST JOE AS ALWAYZ👍
I was talking about the last post u had up on FATIGUE...even so brain fog/concentration is very bad news as well👍
I went to PT yesterday after therapy I got home to sleep woke up with a nasty vertigo all night woke up this morning and I feel like a truck hit me I can barely get out of bed the dizziness/ vertigo is horrible my words get mix up pain is bad I’m just crying
I hear you.
I'm so sorry for your suffering. 😭💔
I wish I had answers for you.
This is a healing place to be, with others in the same boat with you.
🥀with Thanks🥀
Great video the only thing extra i would have mentioned is PAIN fluctuating yes but always there. I'm 17 years in to this shit show 😔
Love how RUclips notified me now after 5 days. Long/Post Covid screwed me. Just like the unqualified doctors here in Germany. They have vacation, and don’t care. I’m mad that everything takes so long. Explains why I’m irritated
Yes you nailed it !!!
I am going to send this to a few people. I have lived with so much disrespect for so many years. I would love some tips on how to deal with this as it is getting worse. I am having to take Gabapentin and it gives me seizures. Thank you for your help, I am going to try to watch more videos but they make me so sad for myself. Poor me. 🙂
I wake up and take two liposomal vitamin C then chew one nicotine gum piece, take 1 Vitassium pill then eat protein like bacon and eggs and drink a little coffee, then two hours later I take a thiamix (thiamine pill) and a sulbutiamine because my specific CFS has something to do with needing lots of thiamine. Then a couple hours later I take liposomal vitamin C and stay hydrated with esentia brand ph balanced water. Then at night I take magnesium. I also keep icepacks around for pain. I'm still not ever going to be 100 better but it's a way to manage my energy and have a semi functional life in spite of my fibromyalgia and me/CFS. I have worked my way from a bedridden condition in 2019 to bring up and around and able to do light housework. Keep in mind that depending on what is causing your chronic fatigue this protocol may not help everyone...but if the root cause of your ME CFS is thiamine deficiency is "beri beri" related or deficiency related this may help. At first all I did was add b-1 and liposomal vitamin C and change my diet to no sugar and mostly protein and veggies, but later I discovered products like Normalyte and Vitassium for POTS. For me personally Normalyte had too much potassium and made me feel dizzy at times so I switched to Vitassium.
i take magnesium glycinate, ithas helped with the complete fatigue i get after the first hour of waking up.
I have lympnode swelling in neck , sore throat from 2 months continuing, but fatigue has gone down since 1 months , HIV NEGATIVE, SLEEPING PROBLEM is this CFS
And also pain in both armpits, on and off stiffness in neck too ...?? But never had tonsillitis was this mono
if i didn't push myself i wouldn't eat
Relatable 😮💨
There are truly days I don’t eat because I can no longer push myself. Please take care.
@@sherifrazier5899 thankyou - today was one of those days, i'm on antibiotics, my husband spent the money, no food in the house. and i wonder why i'm here.
@@sherifrazier5899 yesterday was one of those - i went to bed at 6am and it was Tuesday and i got up at 2 am today and it's Wednesday - a friend is here from out west - i asked her not to come -yet she did and refuses to understand that i just simply cannot move some days; i don't have a choice.
👍
I get what you mean with people finding CFS/ME hard to understand, but if you have family that has seen you healthy and seen you work your arse off and then seen you just crash and they give you shit for it. That is unacceptable.
Sadly, I think thats more common than most would think. I agree though, its totally unacceptable.
@@fight4me747 😒