Suddenly feel completely well

@dreampop I was massively under eating when this started, up until Christmas eve I thought that might be responsible, a number have people have said that diets which effectively seriously restrict calorie intake have had positive effects, and I used to get them when doing low carb.

The last couple of days I am very highly stressed, some very rash and potentially dangerous behaviour, in fact my actions would suggest to some my sanity might be in question. It's not, it's just my aspergers seems to be extremely dominant right now. Compared with then I am eating vast amounts, I had a small pizza (a whole £2's worth) 2 quite small ham sandwiches, and 3 pieces of fruit. That's a day composed largely of bread based products. I'm depressed, I'm stressed, at least it's not ice cream lol.

I seem to have gone back to the pattern before Christmas, nothing apart from my current goal, mainly thinking about how to achieve it, is happening. Although I have pretty much finished cleaning the flat top to bottom. Without repainting it won't get any cleaner. I can't stop pacing. I am sleeping but not a lot.

Unlike before Christmas as far as I'm aware the weight loss has more or less stopped, possibly because of the bread based diet, instead of the virtually nothing based diet.

I can feel the ME coming back, I'm getting desperate to make some progress. Even though I know it's impossible. I'm running out of time.
 
@Jenny @Wonko
Robert Phair (The IDO Metabolic Trap researcher) posted on PR that he is interested to hear about sudden remission stories if you guys feel like sharing (His username is HTester)
https://forums.phoenixrising.me/ind...-metabolic-trap-guy.62727/page-7#post-1027967
If you or anyone else reading this thread would care to write out a description of everything you can remember about an overnight remission, and the succeeding events as you fell again into sickness, I promise to read every one carefully. I've often said that half of what I know about ME/CFS, I learned from patients. You never know when a patient's story will make a critical connection.
Click to expand...
 
I do not know anybody in the 10 years i have been sick and being on patient forums, that has recovered. But every once in a while, there are these threads with a sensational title such as this one. And then you find out that the improvements have not held.

I wish the titles of the thread were amended so we do not need to read the whoe thread (some are quite long) on exactly what happened.

Edit: my apologies to @Jenny and @Wonko and all of those who felt they were disease free for the short while they felt much better but did not pan out after all :(.
 
I got the impression with @Jenny she knew what was going on and wanted to document before the virus that there was brief remission? It sounds less convincing if you say after the fact that you only feel better just before a new virus.

I get this too and would appreciate a DM if anyone gets specific answers on that (I’m not well enough to consistently keep up with threads).

Yesterday I had it. I didn’t push myself physically but I took the opportunity of a holiday from brainfog to finish an article for MEAction. My partner had a bad cold and I have had this experience frequently enough to realise what was going on.

Now I’m feeling more virally and expect today to be groggy like anyone is fighting a cold. If my body doesn’t quickly fight it off, I’ll probably have it twice as long as healthy people and then a post viral ME and POTS dip.

So pass the vitamins and nose neti!
 
Jenny TipsforME said:
I got the impression with @Jenny she knew what was going on and wanted to document before the virus that there was brief remission? It sounds less convincing if you say after the fact that you only feel better just before a new virus.

I get this too and would appreciate a DM if anyone gets specific answers on that (I’m not well enough to consistently keep up with threads).

Yesterday I had it. I didn’t push myself physically but I took the opportunity of a holiday from brainfog to finish an article for MEAction. My partner had a bad cold and I have had this experience frequently enough to realise what was going on.

Now I’m feeling more virally and expect today to be groggy like anyone is fighting a cold. If my body doesn’t quickly fight it off, I’ll probably have it twice as long as healthy people and then a post viral ME and POTS dip.

So pass the vitamins and nose neti!
Click to expand...

Yes, as I say in my first post I knew that feeling well would be followed by a cold. This has happened probably hundreds of times over the last 36 years. I still haven’t got back to how I was in October.
 
Milo said:
I do not know anybody in the 10 years i have been sick and being on patient forums, that has recovered. But every once in a while, there are these threads with a sensational title such as this one. And then you find out that the improvements have not held.

I wish the titles of the thread were amended so we do not need to read the whoe thread (some are quite long) on exactly what happened.

Edit: my apologies to @Jenny and @Wonko and all of those who felt they were disease free for the short while they felt much better but did not pan out after all :(.
Click to expand...

As I said in my first post I knew that feeling well was a bad omen.
On your point about recovery, I first came down with ME in 1982. In 1988 I was recovered enough to work part-time and by 1990 I was 95% well and working full-time as a single parent. For the next 12 years or so the only symptoms I had were lack of stamina, and the occasional 3 week mild relapse. In 2002 I had a minor skiing accident. This led to a diagnosis of fibromyalgia and a descent into more severe ME.
 
Status update;

Yesterday, after 4 days rest, because I wanted to go and see someone, I had significant and totally unexpected OI issues, I nearly passed out twice within a few minutes. If I wasn't good at this then I suspect I would have. I then had to lie down for a while as my head was too heavy.

I still went out, it hurt, I did not achieve my primary objective, although I did spend some time, mainly talking, with someone new, someone different, a rare and precious thing.

Yesterday I needed to take some NDT to get rid of annoying, and distracting, skin sensitivity. I should really have used oramorph as that has less side effects. Last night I should have taken what used to be my regular pain meds, gabapentin and co-codamol, as I needed them, but It's been months since I had to take them and I really don't want to start on them again. But it's inevitable, with the return of ME the pain is coming back.

Today I have PEM, actual PEM.

Tomorrow I am going out again.

I'm now down to a range of about 500m with crutches, needing at least a days recovery afterwards. That's down from well over 2 miles a day a few weeks ago.

Still a lot compared with most on here, but at that rate of decline.....
 
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