How can you tell when to stop activity?

[BEG]

When my POTS was untreated, I had severe episodes which brought me to my knees and put me into a supine position within minutes. Now everything is different, and it's like learning a new dance after a decade of the same old, same old. How do you know when to quit an activity before it's too late and you've set yourself up for a PEM/flare/replapse?

What exactly do you feel when you are at your max and need to stop? I've used a heart rate moniter and pedometer. I would like to hear about what your body tells you because mine no longer speaks my language.

 

[sleepy237]

I think depending on your ability pacing yourself for example fifteen minutes activity fifteen minutes rest or five minutes of each same way, I'm still waiting to get strong enough to beging pacing but thats tips I have been given. Passing it forward. Hugs

 

[Wonko]

congratulations on your progress so far

I'm sorry but I doubt anyone would be able to tell you that - it's unlikely you'll get good enough to stop all PEM - but you should be able to stop almost all (but not all) moderate or higher crashes after a while

IMO the reasons for this are simple - PEM can be a result of a momentary overexertion as well as 'prolonged' activity at a much lower level - it's fairly easy to PACE and break up activities so as to not cause PEM once you reach a state where this is possible (or simply do LESS) - it's much harder to predict (impossible IMO) what may be considered overexertion at any instant - hence almost impossible to stop all instances of PEM

in my experiences moderate or worse crashes are normally caused by trying to operate at a higher than sensible level when PEM'd - or occasionally before PEM hits - eg trying to follow the work/sleep cycle etc. - or simply pushing to hard because you have something to do that has to be done ie you know your going to have major issues but.....(my last case of that was when I moved - van had to be unloaded - cant just let others do it - fine that day - fine most of the next day - then wasnt seen for or heard from for about a month) - PROVIDED you have enough energy to survive day to day then apart from rare cases or the "oh I'm ok now" state of mind then anythign past severe PEM shouldnt happen often - again IMO

as to what signals do I listen to? obviously if I'm PEM'd it's time to slow down/rest for a few days - before that - lots but probably more personal than general - how I feel when I wake/get up - how long it takes for me to be mentally/physically competent after this - am I particularly suseoptable to senory overload today, any head pains, any visual artifacts, can I read, balance ok, how I feel when I get dressed, how I feel when I try and walk, any joint, muscluar stiffness/pain and to what degree/where - is it just on one side or the other

thats far from an exaughstive list (in fact its only a very small fraction) but see what I mean - unfortuantely these are things you need to notice and correlate yourself - even with a body I know and have had a lot of experience listenign to I still get it wrong far too often

one thing I would say is motivation is a poor postive indicator - it can in most cases be trusted if you dont feel like doing anythign but simply because you really, really, really want to do somethign doesnt mean it's sensible

 

[caledonia]

Good question. I'm having the same problem after getting my adrenal fatigue treated. Still trying to figure out my new limitations and I've PEM'd myself about 3 times already in the past few weeks.

All I can say is pacing is an art, not a science, and you're going to screw up occasionally. But basically what I do throughout the day is, if I feel the slightest bit of increasing tiredess, concentration going away, etc., then it's time to rest.

If it's a larger activity, say like grocery shopping or socializing, then I make a mental note of how much I did, and how I felt afterwards. If it was too much, then the next time I either cut back, or I'm aware that I'll have to rest X number of days after the activity.

 

[L'engle]

I try to monitor for head and body pain, especially head pain, as the blood isn't getting to your head. Also dry mouth or dry eyes can be the first signs. It really seems to vary how much activity bring these on. I've learned that pushing through a headache with mental or physical activity is the worst thing for bringing on PEM. Even if I'm walking and my body doesn't feel bad, if my head starts to feel painful or constricted it's trouble.

 

[Sushi]

What exactly do you feel when you are at your max and need to stop? I've used a heart rate moniter and pedometer. I would like to hear about what your body tells you because mine no longer speaks my language.

I've also used a heart rate monitor, but what I have discovered in myself, is a slight feeling of "pressure" (hard to describe) in the chest. My doctor, who also has POTS, described the same feeling. When I get this, I know I have to stop or I'll get into trouble. However, I've also discovered that if I take a tiny dose of diazepam (2.5 mg), I can prevent the crash. I found a scientific article that could explain this, but can't put my hand on it right now. But...it has nothing to do with anxiety.

Sushi

 

[BEG]

Thanks, Sleepy237, Wonko, caledonia, L'engle, and Sushi. You've given me some very good tips and things to watch out for. I appreciate your responses.

I do recall now that my neck muscles will begin to hurt as a first sign. Funny how many of us have first signs above the shoulders.

Sushi, I no longer feel the chest pressure/pain/inability to walk and breathe feelings b/c the POTS is now treated. I sympathize with what you are going through. Trust me, I know how devasting it is.

 

[*GG*]

I try to monitor for head and body pain, especially head pain, as the blood isn't getting to your head. Also dry mouth or dry eyes can be the first signs. It really seems to vary how much activity bring these on. I've learned that pushing through a headache with mental or physical activity is the worst thing for bringing on PEM. Even if I'm walking and my body doesn't feel bad, if my head starts to feel painful or constricted it's trouble.

I wake up with a dry mouth all the time, so should I just stay in bed? LOL I don't! I suck on cough drops all the time because I have chronic pharingitis also.

 

[valentinelynx]

When I physically overdo, first my ears start to hurt. Then I get sore throat, head fuzzy. If I really go to far, I feel shaky and weak. Yes, very like onset of some upper respiratory virus. What I don't know is if I should have stopped before the ear pain or is that the sign that it's time to stop? How much I am able to do without causing PEM is highly variable, so a strict time limit won't work. I am considering a heart rate monitor. I was able to work 5 days in a row last month (a 52 hour week), and it took me 2 weeks to recover. Then I worked one day last week and it feels worse than after the whole week last month! Maybe I wasn't really recovered from the previous work excess?

 

[Sean]

Hot flushes, POTS type symptoms, general pain and aching, and cognitive confusion are the major warning signs for me. After a while you get a lot better at reading your particular combination of warning signs, and stopping early and avoiding too much payback the next day. Mostly it is just personal experience, not always good, but it teaches you.

Main thing is to leave a large margin for error. Stop doing things while you still feel (relatively) okay.

 

[taniaaust1]

I'd have to say by very long term experience (years and years of it).. without that, one can overdo things without any signs at all one has over done and then be suffering the next day. I know due to how Ive been all the past couple of months, what I can expect to do today. Ive learnt what things can throw curve balls at all (eg combinations of certain things going on).

eg i currently know that if i go over doing 3 hrs of on my feet stuff per day.. Im very likely to have symptoms the next day. So i try to keep my activity levels well below that, that also then allows me to have "reserve" in case something does go wrong. Im fairly safe sticking to 1.5-2 hrs of broken up physical activity per day (as long as it wasnt hard activity eg gardening). By physical activity.. I mean housework, showering, dressing, cooking etc.

Finding out I had POTS and learning to deal with the POTS, has me completely different symptoms wise to what i was before. Over doing things (when the POTS is going on).. will be shown to me by head pressure building up along with increasing tiredness and loss of mental concentration .. (L'engle make sure you dont have POTS, building up head pressure can be POTS sign of overdoing it). .. this head pressure if further i pushed, is followed by dizziness

With POTS being controlled... one of my warning signals that i could be crashing next day CFS wise if i continued... is a very slightly sore throat. I know to stop all activities if that symptom happens to come in or else i risk relapse...

occassionally overdoing it may manifest for me as a general unwellness..malaise feel.. i feel like im starting to be poisoned and will sometimes get a feeling of like something starting to run down the back of my throat (my throat often goes pusy when that occurs and the back of my tongue goes white), this feel for me can be with or without tiredness. That also is my a sign that i need to immediately stop all activities for that day.

I rarely thou have those things occur, as Im careful to stick to what I know are my limits by keeping a good eye on the clock and watching for how long im being active. I will always check the time before I start an activity and have it planned out when I will stop, even before I start it. I know with any easy physical activity going over 45 mins in one go.. I may be starting to go into the zone where I could send my health downhill a bit. Hence i prefer to break activities down into 30 min time slots. (playing it much safer than I need to do.. the end result thou is the same at 1.5 to 2 hrs of physical activity per day).

When i was more ill.. i'd break it down to 10-15 min time slots with a physical activity level of 1 to 1.5 hrs per day.

it's unlikely you'll get good enough to stop all PEM - but you should be able to stop almost all (but not all) moderate or higher crashes after a while

This isnt true...some of us get to the point of knowing our bodies so well that we can stop all PEM. I have been able to go a couple of months at times with NO SYMPTOMS at all.. even minor ones, just be restricting what i do and keeping within the known limits I have. Where Im usually thrown back into a symptom is when another has made me push out of the limits I like to impose on myself to stop all symptoms. By no symptoms.. i mean NONE at all (except my memory isnt as good as before CFS).. if i havent done anything to cause anyway.

Take today for example.. i feel great. Not tired at all, No CFS symptoms at all (im not counting my current arm injury which wont heal probably having CFS keeps inflammation in my body). If my POTS is controlled.. my CFS symptoms only come in on exertion as I've recovered to a point in which I dont have them all the time and stop them coming in by limiting what i do.

On the rare occassions i do overdo.. I only overdo enough to give me extremely minor crash..

(keeping the CFS symptoms this low to the point of often having none (except memory issues and BP dysregulation issues) is no easy feat.. as I did have severe CFS. It can be done (once one is to the point in which ones daily completely necessary stuff doesnt make one any worst, till one gets to that point thou, it cant be. This thou may be impossible for ones with CFS/ME who have got responsiblities eg young children to look after).

 

[BEG]

I rarely thou have those things occur, as Im careful to stick to what I know are my limits by keeping a good eye on the clock and watching for how long im being active. I will always check the time before I start an activity and have it planned out when I will stop, even before I start it. I know with any easy physical activity going over 45 mins in one go.. I may be starting to go into the zone where I could send my health downhill a bit. Hence i prefer to break activities down into 30 min time slots. (playing it much safer than I need to do.. the end result thou is the same at 1.5 to 2 hrs of physical activity per day). When i was more ill.. i'd break it down to 10-15 min time slots with a physical activity level of 1 to 1.5 hrs per day.

...some of us get to the point of knowing our bodies so well that we can stop all PEM. I have been able to go a couple of months at times with NO SYMPTOMS at all.. even minor ones, just be restricting what i do and keeping within the known limits I have. Where Im usually thrown back into a symptom is when another has made me push out of the limits I like to impose on myself to stop all symptoms. By no symptoms.. i mean NONE at all (except my memory isnt as good as before CFS).. if i havent done anything to cause anyway.

Thanks Sean, valentinelynx and taniaaust1 for replying. I've learned new signs when I'm exceeding limitations. However, when the unexpected happens my schedule is shot and so am I. I have no wiggle room in my daily schedule. Household responsibilities (other than errands) are all I can handle, and there is only so much one can do from a recliner. (Thank goodness for household help for the heavy duty cleaning.) Therefore, I still get PEM.:tear:

taniaaust1, I like your method of breaking things into time slots. And I certainly relate to your 2nd paragraph above. There will always be that certain something that's going to push us right out of our comfort zone.

 

[Sean]

Thanks Sean, valentinelynx and taniaaust1 for replying. I've learned new signs when I'm exceeding limitations. However, when the unexpected happens my schedule is shot and so am I. I have no wiggle room in my daily schedule.

Yes, external pressures are tricky issues. I am in a position where they are minimal, but it took many years to get here and I had to leave a lot of things behind, they just could not be managed within my limitations. Not everybody has those options immediately available, eg if you have kids, etc.

All the best.

 

[anciendaze]

One thing I did in the past was to keep a journal of activities and effects. This was something I could do lying down. Reading over entries made before a relapse often revealed overexertion which had not bothered me immediately. Your warning signs may be different from mine. Many are idiosyncratic, though a few a fairly general. Heart rate, and recovery time for same, tells a lot about what your body is doing at the moment, though it isn't terribly practical to have constant monitoring.

I think part of our problem is that the perception of effort is messed up. If we took it at face value, we would scarcely do anything. When I ignored these feelings and pushed myself, I could sometimes accomplish things that surprised both myself and other people -- at a high price. Over time the price exceeds the gain.

My model for limiting effort is like a disparaging description I once heard of a French cyclist, "He races like an accountant." You have to keep those physiological accounts at the back of your mind, especially when you feel relatively good. You have to budget for possible extra effort before you get into a situation requiring too much, even if this prevents you from doing all you might do. We aren't equipped to live any closer to the edge than we must.

 

[BEG]

My model for limiting effort is like a disparaging description I once heard of a French cyclist, "He races like an accountant." You have to keep those physiological accounts at the back of your mind, especially when you feel relatively good. You have to budget for possible extra effort before you get into a situation requiring too much, even if this prevents you from doing all you might do. We aren't equipped to live any closer to the edge than we must.

ancientdaze, words of wisdom. And so true, so true.

I kept a similar diary for Stacy Stevens at Pacific lab. Add another column for perceived rate of difficulty for each activity (she had a chart). She said to add a 0 to that number and that was your heart rate, so to speak. Push 'N Pay. Sounds like some kind of grocery store.

Still yearning after all these years for that fast paced life. BEG