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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I think I am experiencing remission I hope it lasts. Please share your experiences too :-)

Kenjie

Senior Member
Messages
208
Location
New Zealand
Suddenly a week ago after months / couple years of severe tiredness I started to feel okay unexpectedly... Still a little tired but feels like a normal tired. I've been able to keep my eyes open with little effort... Energy seems to last through the day...and the feeling of getting tired in the evening feels good and even then I've been able to stay up watching tv and get around house do things with ease. I haven't felt this good in so long it feels strange! Lol. Ya get so used to feeling severely fatigued that it becomes all you know.

I've not been taking anything to boost my healt . I stopped vitamin d3 and b12 as they made me feel worse. Makes me wonder what is different... Has my body healed itself...even for the moment? Feeling this good is so foreign to me. If this is what well feels like then I am well.(enough).

I hope it lasts. I fear going back to that state where doing dishes or finishing cooking dinner is horrendous. As well as being a single parent.

I sat outside watched my son play for an hour yesterday and even ran around for a few minutes playing hide n seek.. When have I ever been able to do that ! Lol. Last Xmas getting outside to push son on swing or jump on trampoline for 5 mins was an effort.

Maybe, after the entire year of having viruses last year I have had 7 months of fatigue...maybe it has been my body taking time to heal...

I'd be so lucky...

If it happens for you don't take it for granted and don't push yourself too hard too soon. I know I won't be. I will be appreciating it.. For as long as it lasts...
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Have you experienced it?

I've made some progress over the last 17 years (I started crashing - PEM- in 1998) but I've never been in remission. Several things have helped my energy: B12, folate (metafolin), Inosine, beta alanine, branched chain amino acids, glutamine, to name a few. However, nothing has stopped the crashing if I over do it. So I will have days where I feel normal, have good energy, but have to stop after a couple of hours - if I don't, I will be crashed the next day. Also, my immune system definitely seems to be compromised, I get sick way too easily. I recently started taking home-made liposomal vitamin C which seems to be helping with a virus, although I immediately came down with another bug - arggh!

So I feel better overall than several years ago, but have not experienced remission where I didn't have to worry about how much I was doing.

Maybe you don't have CFS/ME, and possibly your body was just recovering from viral infections - that would be great if that's the case - am crossing my fingers for you!
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
I've made some progress over the last 17 years (I started crashing - PEM- in 1998) but I've never been in remission. Several things have helped my energy: B12, folate (metafolin), Inosine, beta alanine, branched chain amino acids, glutamine, to name a few. However, nothing has stopped the crashing if I over do it. So I will have days where I feel normal, have good energy, but have to stop after a couple of hours - if I don't, I will be crashed the next day. Also, my immune system definitely seems to be compromised, I get sick way too easily. I recently started taking home-made liposomal vitamin C which seems to be helping with a virus, although I immediately came down with another bug - arggh!

So I feel better overall than several years ago, but have not experienced remission where I didn't have to worry about how much I was doing.

Maybe you don't have CFS/ME, and possibly your body was just recovering from viral infections - that would be great if that's the case - am crossing my fingers for you!

Would be a dream come true lol.maybe if I feel better consistently 6+ months I will feel confident :).

I love that people become so knowledgeable in their experiences with CFS. There is so much to learn and always something new.

I can only hope my body is healing. I'd be afraid of a backlash of chronic to severe fatigue again. For the time being i am pretty happy that I don't have to rest my eyes constantly.

Still a slight feeling of tired but I'll take it over fatigue any day lol.
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
Would be a dream come true lol.maybe if I feel better consistently 6+ months I will feel confident :).
That's the way to do it! Take it slow, enjoy your new circumestances. No need to explore how far they stretch, everything is right around you for you to enjoy.:thumbsup:

I'd be afraid of a backlash of chronic to severe fatigue again.
I understand your fear, you've been sufficiently bullied by this disease.
But I'm there now: back at severe state again after miraculous healing last year. It's doable. You've done this before, I've done this before. We're alright.

Ofcourse there's frustration and grief and despair. But it's doable. I've danced this dance before, I'll dance it again.
Don't let fear of this possibility cramp your enjoyment of what's happening to you now :):balloons:
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
That's the way to do it! Take it slow, enjoy your new circumestances. No need to explore how far they stretch, everything is right around you for you to enjoy.:thumbsup:


I understand your fear, you've been sufficiently bullied by this disease.
But I'm there now: back at severe state again after miraculous healing last year. It's doable. You've done this before, I've done this before. We're alright.

Ofcourse there's frustration and grief and despair. But it's doable. I've danced this dance before, I'll dance it again.
Don't let fear of this possibility cramp your enjoyment of what's happening to you now :):balloons:

Still tired but its a better tired in many ways :) and manageable
 

GcMAF Australia

Senior Member
Messages
1,027
Suddenly a week ago after months / couple years of severe tiredness I started to feel okay unexpectedly... Still a little tired but feels like a normal tired. I've been able to keep my eyes open with little effort... Energy seems to last through the day...and the feeling of getting tired in the evening feels good and even then I've been able to stay up watching tv and get around house do things with ease. I haven't felt this good in so long it feels strange! Lol. Ya get so used to feeling severely fatigued that it becomes all you know.

I've not been taking anything to boost my healt . I stopped vitamin d3 and b12 as they made me feel worse. Makes me wonder what is different... Has my body healed itself...even for the moment? Feeling this good is so foreign to me. If this is what well feels like then I am well.(enough).

I hope it lasts. I fear going back to that state where doing dishes or finishing cooking dinner is horrendous. As well as being a single parent.

I sat outside watched my son play for an hour yesterday and even ran around for a few minutes playing hide n seek.. When have I ever been able to do that ! Lol. Last Xmas getting outside to push son on swing or jump on trampoline for 5 mins was an effort.

Maybe, after the entire year of having viruses last year I have had 7 months of fatigue...maybe it has been my body taking time to heal...

I'd be so lucky...

If it happens for you don't take it for granted and don't push yourself too hard too soon. I know I won't be. I will be appreciating it.. For as long as it lasts...

I am glad for you

here are some tips that have helped me


Most people with these conditions are dehydrated. This results in inadequate blood flow to the body and inadequate removal of toxins.
Therefore, I suggest that these two steps are taken.

Spices should be added to taste. Cinnamon, cloves, nutmeg, ginger etc

1. Stew fruits and drink the juices. The preparation can be minimal and the fruit can be eventually eaten.

2. Make soups that are as liquid as possible without losing the flavor.

If these become tasteless then add more spices

3. Even porridge or other grains such as quinoa can be made into a liquid form.


The cooking in this manner allows for easier digestion. And because the foods are liquid it maintains hydration of the body.

Eating solid food will slow down digestion, but it has an advantage as it induces sleep.

Then with improvement I think the body can adjust to temperatures better
keeping warm is very important in cold weather (I know this sounds obvious, but some people do not keep as warmas they should)
Regards
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I am glad for you

here are some tips that have helped me


Most people with these conditions are dehydrated. This results in inadequate blood flow to the body and inadequate removal of toxins.
Therefore, I suggest that these two steps are taken.

Spices should be added to taste. Cinnamon, cloves, nutmeg, ginger etc

1. Stew fruits and drink the juices. The preparation can be minimal and the fruit can be eventually eaten.

2. Make soups that are as liquid as possible without losing the flavor.

If these become tasteless then add more spices

3. Even porridge or other grains such as quinoa can be made into a liquid form.


The cooking in this manner allows for easier digestion. And because the foods are liquid it maintains hydration of the body.

Eating solid food will slow down digestion, but it has an advantage as it induces sleep.

Then with improvement I think the body can adjust to temperatures better
keeping warm is very important in cold weather (I know this sounds obvious, but some people do not keep as warmas they should)
Regards

Hi.
red
I am glad for you

here are some tips that have helped me


Most people with these conditions are dehydrated. This results in inadequate blood flow to the body and inadequate removal of toxins.
Therefore, I suggest that these two steps are taken.

Spices should be added to taste. Cinnamon, cloves, nutmeg, ginger etc

1. Stew fruits and drink the juices. The preparation can be minimal and the fruit can be eventually eaten.

2. Make soups that are as liquid as possible without losing the flavor.

If these become tasteless then add more spices

3. Even porridge or other grains such as quinoa can be made into a liquid form.


The cooking in this manner allows for easier digestion. And because the foods are liquid it maintains hydration of the body.

Eating solid food will slow down digestion, but it has an advantage as it induces sleep.

Then with improvement I think the body can adjust to temperatures better
keeping warm is very important in cold weather (I know this sounds obvious, but some people do not keep as warmas they should)
Regards

Dehydration is result of poor blood flow.....i think poor blood flow comes first.
why we have poor blood flow is the real question that we would love to hear answer....
 

ghosalb

Senior Member
Messages
136
Location
upstate NY
one way to tell if you had CFS or not is......is your recovery back to same level of energy/wellness as before you thought you got CFS......because in my experience, I had few recoveries but each recovery was at a lower level of wellness than last recovery.
I am hoping that yours is back to 100% wellness and it is not CFS.....
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
one way to tell if you had CFS or not is......is your recovery back to same level of energy/wellness as before you thought you got CFS......because in my experience, I had few recoveries but each recovery was at a lower level of wellness than last recovery.
I am hoping that yours is back to 100% wellness and it is not CFS.....

I wouldn't say perfect. Still feel a little tired but nothing like I have been. I like that my eyes don't feel heavy now and that full feeling in forehead is gone.

Perhaps it might take more time to see higher motivation levels to return also. Got too used to sitting in chair not being able to do too much.

Slow and steady will hopefully win in my favour.

I hope others will also feel a level of better too.
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
That's the way to do it! Take it slow, enjoy your new circumestances. No need to explore how far they stretch, everything is right around you for you to enjoy.:thumbsup:


I understand your fear, you've been sufficiently bullied by this disease.
But I'm there now: back at severe state again after miraculous healing last year. It's doable. You've done this before, I've done this before. We're alright.

Ofcourse there's frustration and grief and despair. But it's doable. I've danced this dance before, I'll dance it again.
Don't let fear of this possibility cramp your enjoyment of what's happening to you now :):balloons:

How long did your last wellness last?
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
A big part of me does not want anymore viruses for fear of backlash!

Lately I think to myself the more people you're around the more probability you'll catch something... I'm around people very little but I won't always avoid bugs with son attending Kindy and recently he has had cinjuntuvitus and brought a spot of a cold home.

Bugs are far more rampant these days and people being sick with one thing or another has become more common and frequent. Unfortunately.

I live rurally... I love it!
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
How long did your last wellness last?
9 months, from May 1st 2014 until Feb 1st 2015.

Two weeks of external stress factors (a family crisis and a legal matter) then send me into relapse of which I have not recovered. I'm back at level April 2014 which is 40% of a healthy person, housebound and no room in my mind to pursue intellectual or artistic interests. No realistic expectations of gaining more health without an outside prompt.

I live rural too, don't meet much people and never get the viruses that are all the rage ;)
haven't had a cold or the flu in years.

edit: my cat has conjunctivitis too, it's bacteria. Wash hands when handling it's eyes and "eye snot". Eww and brrr! I don't use soap btw, just the act of washing rinses away bad bacteria enough. I keep the healthy population on my skin, giving no room to bad ones. Coconut oil is anti-bacterial, I use it on my skin and hands.
ps. for internal fortification I make sure my stomach acid is acid enough, specifically aimed to kill any bugs that come in through food and nose. I take HCL or lemon juice or diluted vinegar. Helps digestion too.
 
Last edited:

Kenjie

Senior Member
Messages
208
Location
New Zealand
I
9 months, from May 1st 2014 until Feb 1st 2015.

Two weeks of external stress factors (a family crisis and a legal matter) then send me into relapse of which I have not recovered. I'm back at level April 2014 which is 40% of a healthy person, housebound and no room in my mind to pursue intellectual or artistic interests. No realistic expectations of gaining more health without an outside prompt.

I live rural too, don't meet much people and never get the viruses that are all the rage ;)
haven't had a cold or the flu in years.

edit: my cat has conjunctivitis too, it's bacteria. Wash hands when handling it's eyes and "eye snot". Eww and brrr! I don't use soap btw, just the act of washing rinses away bad bacteria enough. I keep the healthy population on my skin, giving no room to bad ones. Coconut oil is anti-bacterial, I use it on my skin and hands.
ps. for internal fortification I make sure my stomach acid is acid enough, specifically aimed to kill any bugs that come in through food and nose. I take HCL or lemon juice or diluted vinegar. Helps digestion too.

I have a cold. Great luck catching it just a week and a half after feeling better. Luckily i did not get conjunctivitis as I washed hands and sons hands and kept telling him not to rub his eyes.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
Suddenly a week ago after months / couple years of severe tiredness I started to feel okay unexpectedly... Still a little tired but feels like a normal tired. I've been able to keep my eyes open with little effort... Energy seems to last through the day...and the feeling of getting tired in the evening feels good and even then I've been able to stay up watching tv and get around house do things with ease. I haven't felt this good in so long it feels strange! Lol. Ya get so used to feeling severely fatigued that it becomes all you know.

I've not been taking anything to boost my healt . I stopped vitamin d3 and b12 as they made me feel worse. Makes me wonder what is different... Has my body healed itself...even for the moment? Feeling this good is so foreign to me. If this is what well feels like then I am well.(enough).

I hope it lasts. I fear going back to that state where doing dishes or finishing cooking dinner is horrendous. As well as being a single parent.

I sat outside watched my son play for an hour yesterday and even ran around for a few minutes playing hide n seek.. When have I ever been able to do that ! Lol. Last Xmas getting outside to push son on swing or jump on trampoline for 5 mins was an effort.

Maybe, after the entire year of having viruses last year I have had 7 months of fatigue...maybe it has been my body taking time to heal...

I'd be so lucky...

If it happens for you don't take it for granted and don't push yourself too hard too soon. I know I won't be. I will be appreciating it.. For as long as it lasts...

I'm glad to read you are feeling better. However what caught my eye is you expressed your healing as "less tired"
That is one of only a multitude of symptoms w/ this disease.
Wondering how other symptoms of ME/cfs are doing ? Headaches, pain, muscle weakness, neuro cognitive problems, etc are doing ?
Or did you only have Chronic Fatigue ? That's fine.All welcome here. But it's important for those of us here to understand what you are recovering from.
Thank you . And again best wishes for continued improved health !
 

Kenjie

Senior Member
Messages
208
Location
New Zealand
I'm glad to read you are feeling better. However what caught my eye is you expressed your healing as "less tired"
That is one of only a multitude of symptoms w/ this disease.
Wondering how other symptoms of ME/cfs are doing ? Headaches, pain, muscle weakness, neuro cognitive problems, etc are doing ?
Or did you only have Chronic Fatigue ? That's fine.All welcome here. But it's important for those of us here to understand what you are recovering from.
Thank you . And again best wishes for continued improved health !

Hard to pinpoint what exactly I'm recovering from. Could've been CFS as doctor diagnosed or there could've been an underlying cause.

I also think the less tired is getting lesser. Only i have caught a head cold. But around that my functioning is back up to full capacity. Well that's just how it feels... I don't want to speak too soon. I want to see if it improves further after the cold clears. Im tired from having a cold...there is a definitive difference... Only now its 11.24pm nz time im not forcing myself to stay awake. I am awake with ease.

Time to sleep and hope this headcold clears soon and if the energy keeps up i am looking forward to summer!
 

beaker

ME/cfs 1986
Messages
773
Location
USA
Hard to pinpoint what exactly I'm recovering from. Could've been CFS as doctor diagnosed or there could've been an underlying cause.

I also think the less tired is getting lesser. Only i have caught a head cold. But around that my functioning is back up to full capacity. Well that's just how it feels... I don't want to speak too soon. I want to see if it improves further after the cold clears. Im tired from having a cold...there is a definitive difference... Only now its 11.24pm nz time im not forcing myself to stay awake. I am awake with ease.

Time to sleep and hope this headcold clears soon and if the energy keeps up i am looking forward to summer!
I guess I am asking what symptoms did you experience w/ your illness other than "tiredness", if any ?
And if you experienced other symptoms, are they also getting better ?

Sorry if i wasn't clear enough.

Thanks, and again glad you are feeling better.