This disease is bizarre!
- Thread starter Sandman00747
- Start date
I have a sudden "good day" every 4/5 years or so and although it is never a proper remission I feel good and able to do things and think clearly. Every time one of these happens I take a note of everything I remember doing / eating / taking etc for the days before.
The only things that comes up more than once is "pizza". Bizarre but true in the evening before my last two "good days" (and one distant) previous to that I was well enough to go to a local restaurant (not the same one) and eat pizza.
That means that I was actually well enough to go out, that I wanted pizza (not a very frequent meal for me) and then, even after an evening out to eat I actually felt better the next day.
This is probably a huge red herring and I am embarrassed to be posting. Just mentioning because it is so odd. It doesn't last and cannot be repeated at will.
The only things that comes up more than once is "pizza". Bizarre but true in the evening before my last two "good days" (and one distant) previous to that I was well enough to go to a local restaurant (not the same one) and eat pizza.
That means that I was actually well enough to go out, that I wanted pizza (not a very frequent meal for me) and then, even after an evening out to eat I actually felt better the next day.
This is probably a huge red herring and I am embarrassed to be posting. Just mentioning because it is so odd. It doesn't last and cannot be repeated at will.
Back in 2004 something similar happened for me, except it lasted about 6 weeks. It wasn't a full remission and I was careful to stay within what I regarded as sensible limits for the period of remission, i.e. I was doing more than I had previously but limiting myself in what I did do. I could have done more if I had pressed myself. Like others have said, I could find no reason why I had that remission at that time and by the end of about 6 weeks I had returned to a "normal illness state". Prior to that my ME had fluctuated, but not to the extent of that kind of remission. After that episode, I seemed to fluctuate less and I seem to have been on a slow downward trend to where I am now - housebound and capable of little.
I wouldn't be embarrassed to post that
.About 3 months ago a regular came to my ME self-help group, saying that he had been grilling steaks with his family and thought "sod it, why shouldn't I have a beer" (he'd been off alocohol for months), so he had one, and another, until he'd had 5. He was then completely symptom free for three weeks, up to the meeting. I planned to ask him what brand of beer it was at the next meeting, but he didn't show up.
I haven't touched alcohol for months, but have just been experimenting a bit with red wine. I think it's going well, as I've just had 2 good days (I managed a whole day sitting in my office doing paperwork yesterday for the first time in months). It's early days and I realise that correlation isn't causation, but I'll continue experimenting. The real test will be next week when I start back at my two biggest customers. If rolling in drunk is what it takes ...
Sandman00747
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You definitely shouldn't be embarrassed to post that ukxmrv! There are just infinite unknowns with this disease. If anything it makes me want to go out for a pizza!
But all these fascinating stories of temporary remission just add to the mystery of this. It's just as I said, a bizarre disease!I've a had few positive experiences over the years. It's kind of funny how going to bed and waking up brings me back to square one. What the heck happened to me during sleep that ended my good spell?
One experience in particular happened on a day that I had a blood draw. My results showed TSH at 1.5, free T3 and free T4 were all in good normal range. I might have sub-clinical hypo thyroid because my TSH ranges from 2.5 and higher normally. So I'm thinking that on that particular feeling good trend was thyroid related. Possible HPA dysfunction affects this?
I was not helped with thyroid treatment in the past but I feel as though it wasn't optimally treated. I don't have hypo symptoms so who knows.
One experience in particular happened on a day that I had a blood draw. My results showed TSH at 1.5, free T3 and free T4 were all in good normal range. I might have sub-clinical hypo thyroid because my TSH ranges from 2.5 and higher normally. So I'm thinking that on that particular feeling good trend was thyroid related. Possible HPA dysfunction affects this?
I was not helped with thyroid treatment in the past but I feel as though it wasn't optimally treated. I don't have hypo symptoms so who knows.
svetoslav80
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I've never had even an hour of full remission, but your stories reminded me of this movie - https://en.wikipedia.org/wiki/Awakenings , some of you may like it.
Yeah, good movie! I never associated it with ME/CFS remissions but now I see the connection.
The intensity of my CFS changes between like 10% of normal to 40% of normal depending on time of day and random factors. Sometimes I get these 6-10 hours when I'm around 80% of normal. Like 2 times a month. But of course if I push myself past my limit during this time I'm back to 10-20%. I'm 23.
Mel9
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Don't mix up cause and effect
It could as well be the case that since you are better for some reason your body temperature starts rising.
I also have no idea. What I do know is that I usually don't do well on higher temperatures.
My body temperature is very low when I feel worst. E.g. It can be 33.7C to 34.3C