Hour to Hour and Day to Day Symptom Unpredictability

[Carrigon]

One of the most frustrating things for me is never knowing how I will be hour to hour or day to day.

Like today, I was able to cook this afternoon, but it triggered POTS and now I'm fevered and really, really sick. Cannot move from this bed.

Some mornings I will feel like I'm just dying with severe pain and fatigue and a million symptoms. Then by that afternoon, I might be better and be able to do something.

Or it's the opposite where I was okay in the morning and by noon or night I am at death's door again.

Or I'm sick the entire day and by late at night I'm better and could actually do something but it's too late to go anywhere or do anything.

And appointments are hell on me. The stress of not knowing how I will be on that day, at that specific time. It's absolute hell. And of course, most things want you to have a morning appointment. No one gets that we're usually really sick in the morning. But often it doesn't matter cause I can be sick at any time on any given day.

It's impossible to ever really make plans or do anything I ever want to do because usually I'm too sick when I want to do whatever it is. It's just so frustrating.

And this is the second time this week that I've found my hands and arms are too weak to lift pans when I'm cooking. It's really hard for me. Weak, lightheaded, dizzy when trying to make myself something to eat. Doesn't matter if I sit down alot, still happens.

 

[Boule de feu]

This is why we need to embrace every second, every minute of each positive moment we have with this illness. I had a relapse that lasted a month and I thought I would never make it out of it. Now, I feel a bit better. I enjoy this time I have, now. It is not perfect. I can't go out but it is better and I can manage to do few things. Try to focus on the positive you have. Stop looking at the bad times. It will be easier on you. I know it works me even though it is pretty tough to think that way. Hang in there!

 

[illsince1977]

My experience is the same. It's amazingly unpredictable and variable.

 

[fireflymd]

I know this is an old thread, but this is a big problem for me.

I’m a physician, and I can make it most days to work, with an abridged schedule, but my supervisor has suggested I go part-time because when I call in sick to work, it involves rescheduling a full day of patients, and it is very disruptive to all involved.

But I don’t know ahead of time which days I will be able to get up, and which days I will be incapacitated. The unpredictability is unbelievable. I have off today, but I had to cancel getting my haircut because I could barely get out of bed.

Alternatively, when I am “functional” (not normal—I have never felt back to normal) I look great and act so normally it makes the debilitated days even less credible.

I wish I knew what is happening on the days I can function. Why can’t I replicate this every day? What is happening on the incapacitating days?

And why do some things work initially, then stop working? Just like in the documentary, Unrest, I have had initial success with some treatments (Valtrex and Valcyte) then back to incapacitating fatigue.

Thanks for listening.

 

[E.man]

The unpredictability makes any thing involving others almost impossible. Can't organise anything major and might have to cancel anything at all at short notice.

 

[perrier]

You describe it perfectly; living like this impacts the soul; humans like some predictability, humans thrive because they can make plans, 'build' things as it were. But this illness is quite like an abusive spouse, as you never know when the lashing will come. Please please researchers, please find something soon.

One of the most frustrating things for me is never knowing how I will be hour to hour or day to day.

Like today, I was able to cook this afternoon, but it triggered POTS and now I'm fevered and really, really sick. Cannot move from this bed.

Some mornings I will feel like I'm just dying with severe pain and fatigue and a million symptoms. Then by that afternoon, I might be better and be able to do something.

Or it's the opposite where I was okay in the morning and by noon or night I am at death's door again.

Or I'm sick the entire day and by late at night I'm better and could actually do something but it's too late to go anywhere or do anything.

And appointments are hell on me. The stress of not knowing how I will be on that day, at that specific time. It's absolute hell. And of course, most things want you to have a morning appointment. No one gets that we're usually really sick in the morning. But often it doesn't matter cause I can be sick at any time on any given day.

It's impossible to ever really make plans or do anything I ever want to do because usually I'm too sick when I want to do whatever it is. It's just so frustrating.

And this is the second time this week that I've found my hands and arms are too weak to lift pans when I'm cooking. It's really hard for me. Weak, lightheaded, dizzy when trying to make myself something to eat. Doesn't matter if I sit down alot, still happens.

 

[perrier]

This is why we need to embrace every second, every minute of each positive moment we have with this illness. I had a relapse that lasted a month and I thought I would never make it out of it. Now, I feel a bit better. I enjoy this time I have, now. It is not perfect. I can't go out but it is better and I can manage to do few things. Try to focus on the positive you have. Stop looking at the bad times. It will be easier on you. I know it works me even though it is pretty tough to think that way. Hang in there!

You are lucky; you can go out. So many are trapped in their homes, or in their beds. Going to helps the spirit. Staying indoors renders all sorts of problems to the spirit.

 

[perrier]

Dear Firefly
I do not understand this illness one bit anymore. After so many years of watching a family member suffer, I feel I understand less and less. Have you any thoughts about this condition?

I know this is an old thread, but this is a big problem for me.

I’m a physician, and I can make it most days to work, with an abridged schedule, but my supervisor has suggested I go part-time because when I call in sick to work, it involves rescheduling a full day of patients, and it is very disruptive to all involved.

But I don’t know ahead of time which days I will be able to get up, and which days I will be incapacitated. The unpredictability is unbelievable. I have off today, but I had to cancel getting my haircut because I could barely get out of bed.

Alternatively, when I am “functional” (not normal—I have never felt back to normal) I look great and act so normally it makes the debilitated days even less credible.

I wish I knew what is happening on the days I can function. Why can’t I replicate this every day? What is happening on the incapacitating days?

And why do some things work initially, then stop working? Just like in the documentary, Unrest, I have had initial success with some treatments (Valtrex and Valcyte) then back to incapacitating fatigue.

Thanks for listening.

 

[KristenSF]

@fireflymd Like you, I am perplexed by the unpredictability of this illness. My doctor asked me to get labs done over a month ago, and I've been too ill to leave the house since. This was preceded by five weeks of feeling better than I have since I became ill over three years ago.

I've kept detailed journals during the last 3-1/2 years since I became sick, and I read and reread them trying to discern some sort of pattern or trend, but there is none.

And I have the same issue you mention with some things working initially, then not working. Right now my most perplexing symptom is chronic muscle and joint pain. I've tried dozens of meds at this point, and several work for a week or so, then they don't.

It's a confounding illness, that's for sure!

 

[fireflymd]

Dear Firefly
I do not understand this illness one bit anymore. After so many years of watching a family member suffer, I feel I understand less and less. Have you any thoughts about this condition?

After years of "healing my gut", "detoxing", trying every mitochondrial supplement, injections of B12/folinic acid for MTHFR mutation, treating candida, mold, hormonal imbalance, hypothalamic dysfunction, chelating heavy metals, etc. etc. I have no idea. Every time I think I have "found the answer", it turns out not be the case. I had a rotted root canal tooth removed and felt "cured". Then I had radiation therapy and crashed, far worse than I had ever been before.

It seems like I have a genetic predisposition to "poor protoplasm" (possibly impaired mitochondrial function) and "something" (environmental toxicity, stealth viral infection, Lyme, who know?) shifted my metabolism to "near death" status. Maybe it's autoimmune and that's why I can't "fix" it. But having "good days" and "bad days" or even "good hours" and "bad hours" seems to indicate some metabolic process that's working ok, then not working.

I actually feel reassured that others have had this experience as well, although it makes it harder for my family and my work to understand what's happening.

 

[fireflymd]

@fireflymd Like you, I am perplexed by the unpredictability of this illness. My doctor asked me to get labs done over a month ago, and I've been too ill to leave the house since. This was preceded by five weeks of feeling better than I have since I became ill over three years ago.

I've kept detailed journals during the last 3-1/2 years since I became sick, and I read and reread them trying to discern some sort of pattern or trend, but there is none.

And I have the same issue you mention with some things working initially, then not working. Right now my most perplexing symptom is chronic muscle and joint pain. I've tried dozens of meds at this point, and several work for a week or so, then they don't.

It's a confounding illness, that's for sure!

I am so sorry you are dealing with chronic muscle and joint pain. Interestingly, I have noted the days that are the worst for me occur when I wake up and have severe lower back pain.

I wish I knew what was "working" during the times I feel "functional". It's such a mystery. I do feel lucky that I am not bed bound, at least not yet. But it is a mystery.

 

[Misfit Toy]

I am feeling this same way. I don't know what to do anymore. I try and accept the limitations and then start feeling better and then I start working again. Then, after working I crash for months on end. Doing nothing can make me worse, then initially doing something to keep my mind busy makes it better but then there is a crash.

I don't know how to navigate this anymore. My therapist says to just work when you can and let it go, but I am not good at that. I need stability. I need to know, I can work, or I can't work. The up and down of it all makes me nuts.

I am also solo and have no other means of support. A week ago, I was exhausted but up and doing. Last Friday, I hurt my back and now I can't move. Had an epidural and can't sleep. Also, now I can't stop eating. I am being swung from left to right and there is rarely ever and in between. I am sick of it.

I am exhausted.

 

[fireflymd]

I am feeling this same way. I don't know what to do anymore. I try and accept the limitations and then start feeling better and then I start working again. Then, after working I crash for months on end. Doing nothing can make me worse, then initially doing something to keep my mind busy makes it better but then there is a crash.

I don't know how to navigate this anymore. My therapist says to just work when you can and let it go, but I am not good at that. I need stability. I need to know, I can work, or I can't work. The up and down of it all makes me nuts.

I am also solo and have no other means of support. A week ago, I was exhausted but up and doing. Last Friday, I hurt my back and now I can't move. Had an epidural and can't sleep. Also, now I can't stop eating. I am being swung from left to right and there is rarely ever and in between. I am sick of it.

I am exhausted.

I am so very sorry. My heart goes out to you and all who suffer with this debilitating disease.

 

[SueJohnPat]

So true about the unpredictability. I would love to go back to work to try part time ( was a community pharmacist) but can’t because my cognitive function starts to decline after 3 hours of activity inside a building. Outside I do ok. I have been gaining a bit health wise and feel if I tried to work I would be compelled to push too much and crash.