IntuneJune
Senior Member
- Messages
- 562
- Location
- NorthEastern USA
It is all such a mess....... confusing.
What I know:
Thirty years ago, I was diagnosed with fibromyalgia.
During that time, I was extremely tired..... and did rest a lot taking SCHEDULED afternoon naps. Also during that time, I had episodes of what cannot be described by the word "exhaustion." If I were a computer, it would be similiar to being disconnected from the power source. For example on one occasion, I can remember making my way from the parking lot to the soccer field to watch my son's game and realizing, I was not going to make with an overwhelming sence of having nothing to keep me walking....I had to drop to the ground and rest awhile.
This never developed into being bedbound as so many on this forum. But I feel it very easily could have delveloped into a long term problem. This is how I can believe those who say they cannot stand..... I felt it or something very similar.
Those episodes did get better (not the fibro pain though and other FMS stuff) ...... but now am suffering more tiredness, exhaustion, with a smidgeon of that "disconnected feeling" of having NOTHING to draw from to be able to move limbs or even stand erect.
How did I miss the bullet the first time, why did that problem not get worse?
Because ONE of the things I did at that time was to take scheduled naps, I am trying to allow myself that pleasure again. And I am tweaking my immune system AGAIN..... it is a full time job. And it is hard with a dynsfunctional mind. Alas, if it were that simple, the folks here would be better also.
Hopefully we will have some good news soon...........until then,
the beat goes on. June
What I know:
Thirty years ago, I was diagnosed with fibromyalgia.
During that time, I was extremely tired..... and did rest a lot taking SCHEDULED afternoon naps. Also during that time, I had episodes of what cannot be described by the word "exhaustion." If I were a computer, it would be similiar to being disconnected from the power source. For example on one occasion, I can remember making my way from the parking lot to the soccer field to watch my son's game and realizing, I was not going to make with an overwhelming sence of having nothing to keep me walking....I had to drop to the ground and rest awhile.
This never developed into being bedbound as so many on this forum. But I feel it very easily could have delveloped into a long term problem. This is how I can believe those who say they cannot stand..... I felt it or something very similar.
Those episodes did get better (not the fibro pain though and other FMS stuff) ...... but now am suffering more tiredness, exhaustion, with a smidgeon of that "disconnected feeling" of having NOTHING to draw from to be able to move limbs or even stand erect.
How did I miss the bullet the first time, why did that problem not get worse?
Because ONE of the things I did at that time was to take scheduled naps, I am trying to allow myself that pleasure again. And I am tweaking my immune system AGAIN..... it is a full time job. And it is hard with a dynsfunctional mind. Alas, if it were that simple, the folks here would be better also.
Hopefully we will have some good news soon...........until then,
the beat goes on. June