Fatigue Onset after Calming Down and Relaxing

[md55]

Hi everyone, just wanted to see if anyone else experiences the onset of fatigue like I do.

For my occupation, If need be, I can force myself to be on my feet / walk all day (8 hours with a lunch break in between). During the time when I am on my feet / walking, I don't feel the fatigue. However, once I get home and start to relax and calm down, that's when the fatigue hits and I can barely move my legs and body. Would you consider this a form of Post Exertional Malaise or is it chemicals in the body going haywire? I would then need a couple of days to recover (i.e. there is no way i can do the 8 hour thing days at a time like a healthy individual would be able to). Any comments would be appreciated. Thanks.

 

[Valentijn]

For my occupation, If need be, I can force myself to be on my feet / walk all day (8 hours with a lunch break in between). During the time when I am on my feet / walking, I don't feel the fatigue. However, once I get home and start to relax and calm down, that's when the fatigue hits and I can barely move my legs and body. Would you consider this a form of Post Exertional Malaise or is it chemicals in the body going haywire? I would then need a couple of days to recover (i.e. there is no way i can do the 8 hour thing days at a time like a healthy individual would be able to). Any comments would be appreciated. Thanks.

It does sound like PEM. At the start of my illness I would get acute symptoms shortly after a lot of fast walking and getting home (very cold, chills, feeling awful), and usually be in a proper crash the following day.

Do you have symptoms aside from barely being able to move?

 

[lansbergen]

I remember when I still drove I could drive safely for hours but when I got home and turned the engine of fatique hit like a sledgehammer blow.

I thought I was driving on adrenaline.

 

[ukxmrv]

Maybe it depends on people having enough adrenaline to perform for a while but after that it's flogging a dead horse. Also not having POTS or similar complications. Some people report though that they are best walking as their legs moving as it acts to pump the blood around. Could this be a mechanism here?
For me, ME started with an acute viral onset and there was no lead up phase. Fatigue is only part of it. PEM still involves trivial activity and viral symptoms.
There are so many diseases that have fatigue. Don't know enough about all of them to see there is another that could count for this as well?

 

[lansbergen]

I had what I thought was a nasty flu. I never was so sick in my live before and never was the same again as I was before this infection .

I ovedid and became worse and worse.

 

[soxfan]

It is the same for me..I work usually 6 or sometimes 7 hour shifts with a half hour break. During my break I usually stay standing to eat lunch because if I sit I will start to feel the fatigue setting in. As long as I keep moving I seem to be okay.

Once I get into my car to drive home I can really feel it hitting me. I walk in the door and usually have to immediately lay down because just by sitting for the drive home has let the wave of fatigue begin and then there is no stopping it.

When I am home I try to stay active and not sit in a chair for too long. If I start to feel tired even if it is early I will try and go outside for a walk around the yard. I try not to rest until later in the afternoon because I always feel awful after resting.

It has been this way for me for about 5 years now. This wasn't a problem early on in my illness.

 

[Brelliott]

I know exactly what you mean MD55. Often I will get busy chatting when out socializing and my energy seems to be doing ok. Until I just slow down for a minute. I can then feel the malaise sneaking in like a thief in the night. I can get busy cleaning house, sometimes my energy lasts longer than others but never could I work for eight hours. LOL In fact, it makes me laugh as it is such an absurd thought. I've been sick for nine years, having remissions that lasted for months. Now, I have been without a remission of any sort for months. Summer is here in Minnesota, all is in bloom and I want so badly to get outdoors but my energy level is so minute it's impossible to do anything but sit on the swing. My husband has had to plants the entire garden and flowerbeds. It's great you can work those eight hours. Some of us can work fulltime and others, like myself, can't even consider it.

 

[md55]

It does sound like PEM. At the start of my illness I would get acute symptoms shortly after a lot of fast walking and getting home (very cold, chills, feeling awful), and usually be in a proper crash the following day.

Do you have symptoms aside from barely being able to move?

Other symptoms would follow the next day, the main one being gut problems (diarrhea), general fatigue and difficulty concentrating.

I remember when I still drove I could drive safely for hours but when I got home and turned the engine of fatique hit like a sledgehammer blow.

I thought I was driving on adrenaline.

I don't have major any issues when I am sitting or even driving. But I do agree with the adrenaline. It feels like the body is running on adrenaline while I am active and then as soon as I relax and calm down, the adrenaline wears off and boom the fatigue hits.

It is the same for me..I work usually 6 or sometimes 7 hour shifts with a half hour break. During my break I usually stay standing to eat lunch because if I sit I will start to feel the fatigue setting in. As long as I keep moving I seem to be okay.

Once I get into my car to drive home I can really feel it hitting me. I walk in the door and usually have to immediately lay down because just by sitting for the drive home has let the wave of fatigue begin and then there is no stopping it.

When I am home I try to stay active and not sit in a chair for too long. If I start to feel tired even if it is early I will try and go outside for a walk around the yard. I try not to rest until later in the afternoon because I always feel awful after resting.

It has been this way for me for about 5 years now. This wasn't a problem early on in my illness.

Sox fan, how are you coping with the symptoms? Are you taking any meds? You say the fatigue hits after setting in, but how do you feel the next day? For myself, I wouldn't be able to do an 8 hour shift walking/standing 5 days a week. What I describe is pretty much a one day activity and I would have to rest up for 3 days before even thinking about standing/walking again for 8 hours.

It's great you can work those eight hours. Some of us can work fulltime and others, like myself, can't even consider it.

I am fortunate that most of the time I can sit for my job. As long as I am sitting, I can do 8 hour shifts. The mental fatigue isn't a huge issue for me. It's when I am on my feet/walking that's the issue...but doctor's can't seem to find a root cause. It's like I have some symptoms of CFS but not all symptoms...

 

[soxfan]

I feel terrible after working or even of I am out shopping or socializing. I believe it is the mental aspect of thinking and concentrating that causes this reaction for me. I can do physical activity to a limit and not have this same reaction at all.

I only work part time and try not to be scheduled 2 days in a row if possible. I could never work full time again...I work only 2 or 3 days a week. I can usually recover by the next day ...but on the days I work I am totally spent until the next morning. I usually don't have any other symptoms except severe mental fatigue which leads to A physical exhaustion..head pressure..and the nerve pain in my calf kicks into high gear. I also feel like my insides are vibrating and can't calm down. It is a bad bad feeling.

I have tried different meds to try and calm my vody down but haven't really been successful. I am now trying theanine and see if that helps..

 

[xchocoholic]

Everyone does this to a degree so I wouldn't call it pem. Exerting oneself takes energy (burns
calories, atp, etc) and produces or moves toxins. Our bodies are going to try to recover as soon as we give it a chance.

I was healthy for 34 years before getting "cfs" and did this too. Pem isn't considered an immediate reaction to exerting oneself. Looking at info on marathoners may explain this.

Out of curiosity have you tried compression garments ? I'm seeing athletes using these for faster
recovery.

You may benefit from changing your diet or your behavoir during the day. Sit with your feet up as often
as possible. Taking mini breaks mentally could help too. I do these to help me make it through
a long day.

Typically, my pem forces me to sleep all day on day one. I'm a zombie with no co-ordination. Then my pem lessens to sleeping off and on on day 2. I am more co-ordinated. Then i only feel a little out of it on day 3. By day 4 I feel completely healthy again other than my oi. This is a known cycle for me.

Tc .. X

 

[soxfan]

I was reading an explaination on PEM and from what I read it can occur immediately after physical or mental exertion. Because my symptoms do start after the mental exertion and not during or before to me at least would be post. I am down for the count for almost 24 hours after the activity. Mine just happens to occur immediately and usually not the following day...all
Though if I go through a very stressful or emotional situation it can be worse the following day.

I just know what happens to me definately doesn't happen to any of my co workers so I am having some type of problem.

 

[SOC]

Other symptoms would follow the next day, the main one being gut problems (diarrhea), general fatigue and difficulty concentrating.





I don't have major any issues when I am sitting or even driving. But I do agree with the adrenaline. It feels like the body is running on adrenaline while I am active and then as soon as I relax and calm down, the adrenaline wears off and boom the fatigue hits.





Sox fan, how are you coping with the symptoms? Are you taking any meds? You say the fatigue hits after setting in, but how do you feel the next day? For myself, I wouldn't be able to do an 8 hour shift walking/standing 5 days a week. What I describe is pretty much a one day activity and I would have to rest up for 3 days before even thinking about standing/walking again for 8 hours.



I am fortunate that most of the time I can sit for my job. As long as I am sitting, I can do 8 hour shifts. The mental fatigue isn't a huge issue for me. It's when I am on my feet/walking that's the issue...but doctor's can't seem to find a root cause. It's like I have some symptoms of CFS but not all symptoms...

This sounds like a push-crash cycle to me. For me, this led to continually degrading health. Most of us, unless we have some kind of OI, can function for a period of time, we just crash later. I developed OI relatively late in my illness, after whichI had exercise intolerance and PEM, which is really a bust.

 

[SOC]

I feel terrible after working or even of I am out shopping or socializing. I believe it is the mental aspect of thinking and concentrating that causes this reaction for me. I can do physical activity to a limit and not have this same reaction at all.

I only work part time and try not to be scheduled 2 days in a row if possible. I could never work full time again...I work only 2 or 3 days a week. I can usually recover by the next day ...but on the days I work I am totally spent until the next morning. I usually don't have any other symptoms except severe mental fatigue which leads to A physical exhaustion..head pressure..and the nerve pain in my calf kicks into high gear. I also feel like my insides are vibrating and can't calm down. It is a bad bad feeling.

I have tried different meds to try and calm my vody down but haven't really been successful. I am now trying theanine and see if that helps..

IIRC, you are already treating OI, right? I'm just thinking the "I'm okay as long as I'm moving" thing is super common with some form(s) of OI.

 

[SOC]

I was reading an explaination on PEM and from what I read it can occur immediately after physical or mental exertion. Because my symptoms do start after the mental exertion and not during or before to me at least would be post. I am down for the count for almost 24 hours after the activity. Mine just happens to occur immediately and usually not the following day...all
Though if I go through a very stressful or emotional situation it can be worse the following day.

I just know what happens to me definately doesn't happen to any of my co workers so I am having some type of problem.

As I understand it (and this is an oversimplification), if you have trouble with activity, or get worn out easily, you have exercise intolerance which is likely OI, low blood volume, or cardiac problems -- which many of us have.

If the rxn happens the next day or later, it's more likely to be PEM.

Exercise intolerance is more fatigue/exhaustion and can include brain fog, nausea, and other GI problems. PEM tends to have all that plus flu-like symptoms including muscle aches.

This is by no means strictly accurate -- more like a rule of thumb. And we know how good those are.

 

[rosie26]

Sounds like you are using up your adrenaline resources and when you stop, you feel bad.
You may start out ok, but during that 8 hour period the adrenaline probably kicks in and when you get home your body tells you that that was more than you were able to handle, reason why you feel so bad.

Probably both PEM and chemicals going haywire ?

 

[soxfan]

Yeah...I totally feel the adrenaline kicks in when I am at work and start to feel a little tired and am going beyond my limits. It will happen if I go out shopping as well...I can feel it happening and know it is time to stop. I know for sure I should only be working probably 4 hours max and then most likely this would not happen. When I finally stop and rest the adrenaline keeps pumping which is making me feel bad. I can feel it in my body when my insides vibrate etc.

The weird thing is this never happens when I do anything physical....I can go on vacation and snorkel...hike...sightsee...and I never have this reaction afterwards. Yes I am tired but I don't get the horrible adrenaline...vibrating feelings. I still think it has to do with the mental aspect for me. I can still walk 2 miles a day and not feel bad.
I don't really have the symptoms of OI as I have been tested and also tried on a medication for OI which made no difference.

When I get PEM or whatever it is I don't have any other symptoms besides the total mental exhaustion....vibrating insides...feeling like adrenaline is surging through me and my insides are in a total state of chaos. I always need a dark room...total quiet...

I have never had flu...muscle aches....etc. after any activity. That has just never been a part of the illness for me.

It is strange that I don't have this with physical exertion at all....I just can't go out and run a marathon or anything like that but can do yard work...and like I said vacations are always good for me as I feel so much better. I am sure it also has something to do with stress hormones as I do have many problems that are listed under adrenal insufficiency.

 

[rosie26]

Trying to get my head around your symptoms Soxfan, great that you can do walking etc and not suffer for it. But you say you do have tiredness.
but you struggle with the mental exhaustion, mostly ? Working 4 hours a day would be more ideal for you by the sounds. Body lets you know when too much is too much x

 

[soxfan]

I know....my symptoms are strange...I don't think typical CFS. I do have tiredness everyday mostly begins a few hours after getting up but I also have un-refreshing sleep.
Yes.. most definitely struggle with mental exhaustion. I also have nerve pain in my calf but that is it for any kind of pain etc. We are moving soon and I will be quitting my job so maybe that will help with the fatigue.

 

[rosie26]

Sounds like the best thing, quitting the job. Concentrate on building yourself up and getting good amounts of rest. After you have moved.

 

[Aerose91]

I feel terrible after working or even of I am out shopping or socializing. I believe it is the mental aspect of thinking and concentrating that causes this reaction for me. I can do physical activity to a limit and not have this same reaction at all.

I only work part time and try not to be scheduled 2 days in a row if possible. I could never work full time again...I work only 2 or 3 days a week. I can usually recover by the next day ...but on the days I work I am totally spent until the next morning. I usually don't have any other symptoms except severe mental fatigue which leads to A physical exhaustion..head pressure..and the nerve pain in my calf kicks into high gear. I also feel like my insides are vibrating and can't calm down. It is a bad bad feeling.

I have tried different meds to try and calm my vody down but haven't really been successful. I am now trying theanine and see if that helps..

I'm the same as this. If I socialize, do anything I enjoy or even get happy it's too much stimulation for me and causes permanent disease progression. During the event I feel very revved up like a horrible adrenaline rush.