Suddenly feel completely well

J

Jenny

Established Member
I suddenly feel completely well. Since this morning I‘ve had lots of energy, my flu-like symptoms and headache have disappeared and I‘ve walked nearly a mile.

I’m dismayed because I’m 99% sure this is because I’m coming down with a viral infection. I predict that I’ll have cold or flu symptoms by tomorrow morning.

We’ll see.
 
I know exactly what you mean. I've had this many times. Enjoy your short reprieve. Last week I got the flu vaccine as I have asthma which really plays up with the flu on me. I thought I would have headache but instead I had a very good day (the day after vaccine). I had one of those rare free days you are talking about. It was back to the usual the following day. Anyone else have this with vaccine. I hope you won't pay for that mile tomorrow and that you will escape the flu. Why can't someone explain this glitch in our immune systems. They possibly can but I may not have heard about it. It is strange that people with autism have a similar glitch. About a third of children,, with autism feel better with a fever, they are more social alert and chatty. Some parents claim to get a glimpse of what their child might be like if they had not had autism. This is more than coincidence in both cases. I really hope that it's not the flu for you.
 
Just as I thought. Went to bed with a scratchy throat which then became a lot worse with burning sensations that kept me awake most of the night.

This morning have bad cold and all ME symptoms have returned. This probably means being bedridden for weeks, just 10 days after I’d been feeling a bit recovered from my last 5 week relapse.
This has happened to me dozens of times.

As @Starlight says why don’t researchers look at this phenomenon
Also, many of us have relapses and virtual remissions. Tracking a few people using metabolic testing over a period of months might give some indications of what’s going on in these up and down periods.
 
Could this be another indication that ME is autoimmune related, for some at least. Something comes along that gives the immune system a kick, and briefly the ME symptoms change. Could it be that briefly the immune system has a real bug to fight, rather than its host? Just to clarify I'm neither medic nor scientist - just uneducated musing.
 
Barry said:
Could this be another indication that ME is autoimmune related, for some at least. Something comes along that gives the immune system a kick, and briefly the ME symptoms change. Could it be that briefly the immune system has a real bug to fight, rather than its host? Just to clarify I'm neither medic nor scientist - just uneducated musing.
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Yep, this effect is what I get when I get sick with food poisoning or a cold, symptoms temporarily resolve entirely (apart from the cold symptoms) for a day or two. Unfortunately I haven't found any way to replicate those improvements from other treatments, plus I get a cold only once every three years or so, probably due to immune system being in constant overdrive. I believe Ron Davis mentioned briefly at the OMF symposium about having observed a similar improvement in the lab, so presumably he is now trying to understand what factor makes ME/CFS cells behave more normal following a bacterial infection.
 
This sort of brief recovery for a day has happened to me twice. The first time was in 2001 - the day it etched in my memory! I didn't come down with any infection afterwards that I recall.

The second time was in 2005 for a day following an anaesthetic for an arthroscopy. I was given ondansetron and dexamethasone during the surgery, otherwise there's nothing I can think of. Again, there was no infection afterwards. I've had occasion to take both of these drugs since, though not together, but there was no ME improvement.

I hang on to this as evidence that recovery is not a pipe dream.
 
erm.....for the first time I am aware of, in 33 years, I appear to be in remission. It's now been several days, it's difficult to be sure as my body basically hasn't been used much in the last several years so I have no idea what it should be capable of, but today I went into town, by bus but did some walking, a few hundred meters. Without crutches. It was easy, I had too much power so it was also quite fast. I then stood in a queue for nearly an hour. A little uncomfortable but I would imagine everyone would have a problem with it. Cognitively brain fog is reduced, not gone, the cognitive functions I have gradually lost are still lost, but I'm having occurences of very fast, clear thinking, clarity, that I haven't had in nearly 20 years.

I was also able to talk to several people, strangers, I haven't been able to do that for a long time, years, I've simply not had the resources to overcome my aspergers, just looking at people is normally problematic.

I'm also completely off painkillers, I normally take quite a lot of opioid based ones, just to dull things a bit, I don't need them right now.

I am, currently, quite depressed, being depressed is a big improvement over ME. Something about it, I don't know if it's the depression itself or if it's the way it's modified my behaviour (eating, sleeping etc.), or if it's completely coincidental (which seems unlikely given its' never happened before), is making a significant difference.

I have no idea if it's a complete remission, as I'm not pushing it, just gradually scaling up trying to find the wall, I've no doubt it's there somewhere, experience has taught me that.

But for now, depression, bloody marvelous. The only downsides appear to be the crying, I'm a 52 year old man, it gets old fast, and the probably delusional thinking. I'm expecting to be told precisely how delusional I am being later today, that's if I get any response at all.
 
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Well, that's remarkable Wonko. I feel that there is a book in there somewhere - 'How I cured ME'. First, find old letters...

First time in 33 years. Wow. I'm hoping that the remission stays and the depression doesn't. I'll be interested to hear if you come up with a theory as to what's going on.
 
It would seem like a good idea to get and store a blood sample from patients who suddenly feel well. These "well" samples could then be compared to either earlier blood samples taken while ill, or to future blood samples should they relapse. Comparing self-to-self seems like the ultimate control, but there needs to be some kind of infrastructure set up so people know how the sample should be stored and where to send it to get specialized tests, such as metabolomics, cytokines, etc...

Step one would be to get a doctor to take a sample and store it correctly. Understandably, this would not be the first thing on a patient's mind if their symptoms unexpectedly lifted.
 
Hutan said:
Well, that's remarkable Wonko. I feel that there is a book in there somewhere - 'How I cured ME'. First, find old letters...

First time in 33 years. Wow. I'm hoping that the remission stays and the depression doesn't. I'll be interested to hear if you come up with a theory as to what's going on.
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I know you're joking but my writing is still atrocious, at least compared with what I used to be able to produce, my best efforts are the garbled ravings of a fool instead of the elegantly crafted window into my soul they used to be, I don't have the headspace to be able to organise things properly anymore, it's one of the cognitive abilities that went MIA.

Don't get me wrong, in the 33 years I've had long periods of being very mild, I was able to work at one point, long before I knew I had ME, provided the job could be tailored to my limitations. Not many jobs could be. I've had improvements, from bedbound to moderate, and otherwise. But nothing like this, even though so far my apparent capacity is much lower than over a lot of the period I have had ME. That's all explainable, at least to me.

I actually have sore muscles this morning, nothing to do with ME, just because I haven't moved like that in so long.

As to what's going on, I have a suspicion, but that's not really for public consumption.
 
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There was another thread where some people, myself included, talked about feeling better after waking up after only a few hours of sleep. I flew across county once and then slept only about 4 hours before I had to get up. When I woke up, I felt way better than usual. It lasted for 6-8 hours, but then lack of sleep caught up to me. The next day I woke up and was back to square one.
 
oldtimer said:
This sort of brief recovery for a day has happened to me twice. The first time was in 2001 - the day it etched in my memory! I didn't come down with any infection afterwards that I recall.

The second time was in 2005 for a day following an anaesthetic for an arthroscopy. I was given ondansetron and dexamethasone during the surgery, otherwise there's nothing I can think of. Again, there was no infection afterwards. I've had occasion to take both of these drugs since, though not together, but there was no ME improvement.
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I had one similar experience about 4 years into my illness, 1994 or so. I had just finished an acupuncture treatment and was 100% well for about two days. Just for fun I swam twice my usual distance that I had as a sick person with ME (1600 yards vs. 800 yards). Then it all changed back to full ME symptoms.

The oddest feeling I had when I felt 100% well was intense anger for what this illness had stolen from me. When I went back to feeling sick I just felt defeated.
 
@CFS_for_19_years, I too felt defeated when it happened the second time.

Both my experiences were different. The first time was Christmas day. It was a gloriously warm, sunny day and the rest of the family were scattered around the globe so I was by myself. I suppose I should have felt a bit lonely but alll I felt was pure joy. I get teary every time I think of it. For a long time I waited hopefully for another day like that.

The second time was quite different because I didn't want to get my hopes up again. I had had a breast lump biopsy on one day then the arthroscopy on the next so I should have been totally wiped out. After I got over my usual vomiting from the anaesthetic I felt surprisingly well, then the next day I really was 'well'. I think I was too tired to enjoy it properly but I do remember being astonished yet again.
 
This is novel.

My sisters been wanting me to visit over Christmas for years. I have always refused coz of...well you know.

She lives about 200 miles away, several trains, a couple of buses, some walking, some taxis and then dealing with a hotel for a few days, and that's just to get there (thought best as she has several active kids and has an extension being built, no free rooms, and I will need rest, quiet, can't really expect kids to be quiet and leave me alone over christmas if I was staying there, it wouldn't be fair to).

I need to speak her regarding something else, I actually need to see her but she has a family so her coming here, that's 2 days out of her life, near christmas.

So I'm going there, train tickets and hotel have been booked.

Obviously I have some trepidation, I have no idea if this is possible, I haven't done anything like this for approaching 30 years, and I have no idea how real this remission is, but I'm doing it, while I have the chance, I don't really care it could all go wrong.

Take that SW, the slightest sign of improvement and I'm doing stuff, doing what a month ago would have been impossible to even consider - and it's only possible coz I'm depressed as hell at the moment. What does that say about your ME perpetuation BPS BS!!

(If I disappear completely in the new year, you know why lol)

ETA - I'm eating a bit more, and sleeping more, I'm now up to about 4-5 hours every 2-3 nights, in one hit. I lost exactly 6lb this week, so whilst it's probably slowed a bit it's still bloody ridiculous considering I am still mostly just sitting or lying here, on the sofa, all day and night. The only bit of me that is more active is my brain, and that's not doing anything useful, just constantly replaying the same events at me, not the same version obviously, with minor alterations, what ifs. Over and over and again, uses a lot of time. Delusional. Pointless.

Obviously tho depression burns a lot more calories than people think. I'm not complaining. Although I am now lighter than I have been in at least 16 years I'm still 15 stone, I could do with shifting another 3 stone. Once that goes, if the weight is still dropping at anything like this rate, that's when I'll start to get concerned. Somewhere between 8 and 12 weeks, then I'll judge it.

Apart from that, I feel great, I'm trying new things, I'm just not actually achieving much.
 
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