Has the intensity of your fatigue gone down over time?

[panckage]

For me it has. I gradually got worse for a year or 2 then gradually for better for a year or 2. I still most certainly have CFS just not as bad. One of the keys to improvement was that many of the symptoms developed were due to deconditioning. I don't think I could have done much when I was at my worst, but when my CFS improved somewhat I didn't notice. It was because I confused deconditioning with CFS symptoms. Doing some basic strength exercises as well as some cardio on ritalin has really improved a lot of the secondary symptoms of CFS

 

[PatJ]

The intensity of my fatigue is strongly related to OI. In June my OI suddenly increased so much that I now spend much of the day bedbound. The upside is that I discovered how many of my symptoms are OI influenced: fatigue, irritability, air-hunger, brain-fog, poor balance, right calf pain (presumably from blood pooling.)

As long as I spend my day mostly lying down, with regular upright periods of 30-40 minutes at most, I think better, feel better, and have less fatigue.

 

[Seven7]

Has the unbearable, wanting to die, intensity of your fatigue gone down over time? Please help, I want to know...
Thank you.

Yes, Not sure if it is treating the confections w antivirals but I am pretty sure is the combo: midodrine+florinef+beta blocker.

 

[Forbin]

I got sick before they coined "CFS." I don't think it ever occurred to me to label my symptoms as "fatigue" back then because, in my mind, "fatigue" is the result of exertion, and what I was experiencing was constantly there regardless of exertion. "Fatigue" is just a bad metaphor that's used because there is no good English word for the crushing sensation of weakness that one gets with a severe infection.

"Malaise" doesn't cut it either, mainly because it has become more or less synonymous in recent years with "ennui."

 

[rosie26]

I got sick before they coined "CFS." I don't think it ever occurred to me to label my symptoms as "fatigue" back then because, in my mind, "fatigue" is the result of exertion, and what I was experiencing was constantly there regardless of exertion. "Fatigue" is just a bad metaphor that's used because there is no good English word for the crushing sensation of weakness that one gets with a severe infection.

"Malaise" doesn't cut it either, mainly because it has become more or less synonymous in recent years with "ennui."

I like the way you put 'crushing sensation of weakness' @Forbin. It's how I experience it too. I've tried many times over the years to describe it as accurately as I could. This weakness makes you feel like you are close to the edge of death and slowly dying. You also want to die because it is overwhelming and unbearable and you don't know how you are going to be able to look after yourself for years on end like this. It's agonizing to the mind. I had this pretty much constantly in my severe years, very traumatizing.

I never thought I was going to come out of it. I hope I never go back there permanently. I try to not dwell on it, it scares me too much. I still go through severe bouts of it and even after years of experience of this dreadful place, it's still as large and frightening as ever.

 

[rosie26]

I don't think I could have done much when I was at my worst, but when my CFS improved somewhat I didn't notice. It was because I confused deconditioning with CFS symptoms.

I get what you are saying here a bit, but will explain later. I do think that most of us do too much and deconditioning is not a major problem? Our bodies seem to be running marathons without stepping out the gate.

What I have found interesting though in regards to deconditioning and I only have picked up on it in the last few years, is that the last few times I have gone through really severe bouts of ME I noticed there was a point in time where I suddenly felt a new kind of weakness taking hold on top of my familiar ME weakness. Concerned that I couldn't endure this added one as well, I tried to work out what this new weakness was and I wondered whether it was a deconditioned weakness, so I tested it and decided that I needed to carefully start getting out of bed more often to try to strengthen up very very carefully so as not to disturb the ME too much. And it worked, over the next few days that particular new weakness disappeared - so I now know how to recognize that when I get that different weakness occurring after being severely bedridden during a severe relapse, it is time for me to start gently moving around more. What's even more interesting is that my severe relapse slowly improved and eased as well.

So what I am trying to say here is that my ME was improving at the time point, when this different weakness sets in - and so I now read it as a sign that my ME is on the improve and I need to start things in motion of getting up more often and getting some strength back. It is just something I have noticed and may be just me and might not happen for others. As I say, I have only noticed this in the last few years.

 

[panckage]

I get what you are saying here a bit, but will explain later. I do think that most of us do too much and deconditioning is not a major problem?

It's hard to say. I have mild CFS and from what I have read on this forum I would guess that others with mild CFS would have a similiar experience. For people with worse CFS they must have this deconditioning as they can do even less with their bodies but then again with theirs, there is probably not a whole lot they can do about it. Just like a quadriplegic would suffer from deconditioning but good luck them being able to do anything about it

The one thing I am still unsure about it is that for me ritalin allows me to exercise (relatively) normally. Without it cardio is pretty much impossible. I haven't read much about others trying ritalin + exercise in this forum so I don't have any feeling whether that is viable for others as well

 

[rosie26]

It's hard to say. I have mild CFS and from what I have read on this forum I would guess that others with mild CFS would have a similiar experience. For people with worse CFS they must have this deconditioning as they can do even less with their bodies but then again with theirs, there is probably not a whole lot they can do about it. Just like a quadriplegic would suffer from deconditioning but good luck them being able to do anything about it

The one thing I am still unsure about it is that for me ritalin allows me to exercise (relatively) normally. Without it cardio is pretty much impossible. I haven't read much about others trying ritalin + exercise in this forum so I don't have any feeling whether that is viable for others as well

Something that has struck me over the years since my severe onset is that I never get the body aches of having laid in bed too much. I think the immune system sends these kind of signals and lets you know what it wants and needs - as in 'your ill, stay there'. I remember in my 20's if I laid down too long during the day my body would ache and I would need to get up and move around. Not so now.

 

[rosie26]

Has the unbearable, wanting to die, intensity of your fatigue gone down over time? Please help, I want to know...
Thank you.

I hope things are easing up for you now @Dr.Patient ? If not, I hope that you get a 'breather' very soon.