a bad good day

[hmnr asg]

hi there,
I have been dealing with worsening CFS for the last eight years, my symptoms are PEM and terrible brain fog and some days where it takes me all my determination to get out of bed. The whole shebang.
Anyways, last week i woke up one day, and it was all gone! i had tears in my eyes! I woke up and i felt like the old days, refreshed, i was ready to take on the day! i even meditated which i havnt done in a long time (because i fall sleep if i try). The whole day, i felt happy, lots of energy and no PEM. It was like the whole CFS thing was a bad dream!
The day after that, i woke up, and it was all back
While it might seem like that one day should have been welcomed by me, it wasnt! I have forgotten how much life didnt suck before CFS and for the universe to bring me back just to remind me how much i have lost and then throw me back in the CFS abyss is kind of s#$t.

Anyways i have been trying to trace my steps that day to see what i did that might have contributed to my temporary relief from CFS but i cant really recall that day! (brain fog back).

Any ideas why would someone just have a good day after eight terrible years just to fall back into CFS?

Thank you

H

 

[Dechi]

I don't know but I hope it comes back and stays ! I am not severe but sometimes I feel a little bit like that too. And just when I start thinking I am no longer sick, the next day brings me back to reality.

 

[purrsian]

I'm sorry it all came back the next day Did you perhaps overdo it on your good day, because you were excited about feeling so well? Sometimes it's hard to realise, because your body is telling you it's fine and you can do all the things. I think it's important not to get your hopes up too much from one or even a few good days - I'm sure we've all done it, super hard not to. But remain hopeful that you'll get another. It must be quite depressing to have felt so good and then so horrible the next day, but try to focus on the good part of it: it must mean that your body is doing something right to have a good day like that. It may not be able to maintain it yet, but maybe in the future!

 

[hmnr asg]

thank you @purrsian for your reply! i appreciate your kind words. I think you may be right. I did not felt any PEM that day, i guess i tried to make up for all the lost times
Next time this happens I will just go to a park and sit down and revel in feeling normal, even if its for a day.
The whole episode reminded me of the movie The Awakenings http://www.imdb.com/title/tt0099077/

 

[arewenearlythereyet]

I've felt this once after shifting a cold. It was as you describe waking up and feeling an enormous sense of everything suddenly being right energy wise but also a sense of unexplained elation. It also Lasted just under a day and went back to abnormal after that. I've put this down to a weird endorphin rush due to the end of the cold. Quite heady stuff. Never had it since but would like it to happen again even for just one day of that feeling. I'm shifting the cold from hell at the moment so here's hoping. I think your park idea sounds great for next time.

 

[Sidney]

thank you @purrsian for your reply! i appreciate your kind words. I think you may be right. I did not felt any PEM that day, i guess i tried to make up for all the lost times
Next time this happens I will just go to a park and sit down and revel in feeling normal, even if its for a day.
The whole episode reminded me of the movie The Awakenings http://www.imdb.com/title/tt0099077/

Did you have an unusually peaceful day the day before the good one? No need to get up? Lying in bed enjoying looking at trees through the window?
That did happen to me on Saturday; and on Sunday i was much 'better' (unlike you, I did not feel my old self at all, but I was at least able to walk half a mile, and after a rest, do a tiny bit of gardening). Of course I have paid for it today.

 

[hmnr asg]

Did you have an unusually peaceful day the day before the good one? No need to get up? Lying in bed enjoying looking at trees through the window?
That did happen to me on Saturday; and on Sunday i was much 'better' (unlike you, I did not feel my old self at all, but I was at least able to walk half a mile, and after a rest, do a tiny bit of gardening). Of course I have paid for it today.

No i did not! in fact i had a stressful day and i had to meet an old friend after work so i stayed up and had to take him around town (he was visiting from outside).
So i wish i could point my finger on something, but i cant.

 

[gregh286]

did you eat more than normal that day before.
More carbs or any alcohol or did you sleep less hours that night before the good day.
I get days like that all the time. Quite a regular occurence.

 

[hmnr asg]

I ate the same amount as any other day. But i was more tired because i went for a long walk with my friend (usually this causes a crash)
The only difference was that we passed by a mall and i stopped by a little coffeeshop and they had a drink called "the energizer" and i had it. It was a combination of 6 fruits. I really dont think it could be this because i have conducted all kinds of experiments with my diet. But i will go back to see what the hek was in that drink. I will even repeat the experiment to see if it will have the same effect.
I am careful not to read too much info these seemingly random things and not equate correlation with causation, but we will see.
I will report back my results of course

Honestly i think CFS is a very random disease that is subject to internal factors and most of its fluctuations are not caused by such seemingly random factors (IMP), but i will try nonetheless.

 

[gregh286]

well a high fructose drink can activate mTORC through insulin growth factor.
taking a high carb meal or eating lots fruit pre bed can help a lot.
but yes, most of the time,,,,random.

 

[Belbyr]

I sometimes have days like this. I take it as, "Well at least I know I can feel good and maybe whatever is going on is not permanent."

 

[hmnr asg]

I sometimes have days like this. I take it as, "Well at least I know I can feel good and maybe whatever is going on is not permanent."

You are a lot more enlightened than me my friend! my life stopped when my CFS began and i really cant feel anything but despair and anger (dont even know where to direct that anger to, but angry nonetheless).
I hope i can get to the same place as you, but it is VERY hard to resign oneself to a life where all your ambitions and dreams are withering away and you dont even understand why.
Anyways we are all more or less in the same boat, so i am going to spare you my sob story.

 

[CFS_for_19_years]

I had a similar remission that lasted a day or two, following an acupuncture treatment. Like you, it was as if CFS/ME never happened. I also had intense feelings of anger over so much time wasted being sick. For the day or two that it lasted I was able to go swimming and not have any difficult doing laps. I think I swam a mile or so.

 

[Belbyr]

You are a lot more enlightened than me my friend! my life stopped when my CFS began and i really cant feel anything but despair and anger (dont even know where to direct that anger to, but angry nonetheless).
I hope i can get to the same place as you, but it is VERY hard to resign oneself to a life where all your ambitions and dreams are withering away and you dont even understand why.
Anyways we are all more or less in the same boat, so i am going to spare you my sob story.

oh I understand. Most days I am house bound and rely on others to help me get through the day and have traveled to many major hospitals and specialists in search of answers. I guess the point I was trying to make is, even though this might be the worse illness that doesn't kill patients like cancers and other strange diseases, I don't think the damage is permanent and there is an answer out there somewhere...

 

[Sidney]

thank you @purrsian for your reply! i appreciate your kind words. I think you may be right. I did not felt any PEM that day, i guess i tried to make up for all the lost times
Next time this happens I will just go to a park and sit down and revel in feeling normal, even if its for a day.
The whole episode reminded me of the movie The Awakenings http://www.imdb.com/title/tt0099077/

Thank You @hmnr asg for the reference to Awakenings! - I had never seen the film, but I've long been a great admirer of Oliver Sacks, and had read the book years ago. I rented the film, and as I can't look at a screen for more than an hour (on a very good day), i saw it in 2 instalments. It took a couple of days to get the courage to look at the second: I knew it wasn't going to be happy.
But because I read it before I'd even heard of CFS, I hadn't realised the powerful similarity to ME/CFS; not of course in symptoms, which in Encephalitis Lethergica are of a completely different order of magnitude; but in its sad unpredictability.

 

[hmnr asg]

@Sidney
I am glad you watched it! I actually saw it long before CFS. We read the book in highschool and watched the movie i think, i was 17 at the time, now 36.
Sorry the movie wasnt very uplifting but im glad you watched it
The only thing that I like to watch these days that makes me feel better is the show "Bored to Death" on HBO.
The people in it are so incompetent and dysfunctional and yet they are so ok with that and still manage to have a fun life that it makes me feel like maybe i should also be ok with sucking at life due to CFS

It is completely random and hilarious and a good escape from life for me. I am on the second run of the show.

H