PEM/delayed fatigue - cardinal symptom?

[leela]

Gosh everyone, there is so much helpful information here! Really helping me put it all together...
:sofa:

 

[Dainty]

I haven't been albe to read all the responses (yet) but I wanted to respond to this:

Post Exertional Malaise is a terribly inappropriate and misguided phrase. I like Post Exertional Relapse better. Both "fatigue" and "Malaise" need to be stricken from names and definitions of this disease. Sorry Sasha....getting away from your questions.

To me, "relapse" refers to a more long-term increased severity, such as going further down on the Bell scale for several months. I revoer from PEM usually in a few days, which seems very different.

Sasha, I find that when I overdo it the PEM is very distinct from my everyday fatigue (which isn't normal either!). For me it actually occurs not hte day after, but the day after that. Took me a while to make the connection. When I got a new massage therapist and her therapy was more involved than the others had been, I thought I was doing great, and the next day I was great, and the day after I was waking up gasping for air, I couldn't get out of bed, and there were hours when I couldn't even lift my hand to get a drink of water. Fatigue so severe that it should be classed as a type of pain, because it causes intense suffering just by being in your body, even when fully at rest. Awful, awful stuff.

 

[SOC]

Two weeks ago I came down with a bad acute viral infection (exhaustion, malaise, running nose, sore throat & ears) and had to go properly back to bed for about a week. It was ten days before I tried to sit normally in a chair again or leave the flat; previously I could sit for an hour a day and maybe walk ten minutes but now it's provoking PEM and I'm concerned that I've increased my level of dysautonomia by lying down so much (didn't have a choice, of course!). Or it may just be that the virus hasn't properly cleared my system (this is Day 12). I'm trying to increase my ability to sit from scratch by doing ten minutes several times a day (four yesterday) and building up gradually.

SickofCFS, I had a look at the Mayo Clinic site and couldn't find anything very specific (I just found this). I wondered if there was anything on post-viral dysautonia specifically.

Sorry, Sasha! I must be confused. I had to do some rush research when my daughter's mild/moderate dysautonomia got much worse after this year's flu shot. I thought it was Mayo that had the best info, but obviously I was wrong. I'll try to find the info again.

I remember refining the search from dysautonomia to non-familial dysautonomia to post-viral dsyautonomia.

My daughter's doc increased her Florinef (and K-Dur) to twice a day and prescribed compression socks. That helped a lot. She's largely asymptomatic except that she has to be out of bed at least 90 minutes in the morning before she can function without dysautonomia symptoms.

She's still taking the extra meds and wearing the socks (She loves them) 6 weeks after the flu shot. I'm wondering if one of this year's flu viruses is more likely to cause dysautonomia. I don't have serious dysautonomia with my ME/CFS, but I had mild issues after the flu shot, too. Perhaps you got that virus...? Anyway, it took me about 3 weeks to get past my mild symptoms and it seems to be taking my daughter longer. Perhaps you're just not past it after a couple of weeks...?

I'll keep hunting for the info.

 

[Sasha]

Sasha, I find that when I overdo it the PEM is very distinct from my everyday fatigue (which isn't normal either!). For me it actually occurs not hte day after, but the day after that. Took me a while to make the connection. When I got a new massage therapist and her therapy was more involved than the others had been, I thought I was doing great, and the next day I was great, and the day after I was waking up gasping for air, I couldn't get out of bed, and there were hours when I couldn't even lift my hand to get a drink of water. Fatigue so severe that it should be classed as a type of pain, because it causes intense suffering just by being in your body, even when fully at rest. Awful, awful stuff.

Hi Dainty - I think it's the built-in delay in the PEM that makes it so hard to establish a sustainable activity baseline. So frustrating! Did you find it was only deep massage that had this effect or did you then notice the 48-hour lag for other activities too?

 

[Sasha]

Sorry, Sasha! I must be confused. I had to do some rush research when my daughter's mild/moderate dysautonomia got much worse after this year's flu shot. I thought it was Mayo that had the best info, but obviously I was wrong. I'll try to find the info again.

I remember refining the search from dysautonomia to non-familial dysautonomia to post-viral dsyautonomia.

My daughter's doc increased her Florinef (and K-Dur) to twice a day and prescribed compression socks. That helped a lot. She's largely asymptomatic except that she has to be out of bed at least 90 minutes in the morning before she can function without dysautonomia symptoms.

She's still taking the extra meds and wearing the socks (She loves them) 6 weeks after the flu shot. I'm wondering if one of this year's flu viruses is more likely to cause dysautonomia. I don't have serious dysautonomia with my ME/CFS, but I had mild issues after the flu shot, too. Perhaps you got that virus...? Anyway, it took me about 3 weeks to get past my mild symptoms and it seems to be taking my daughter longer. Perhaps you're just not past it after a couple of weeks...?

I'll keep hunting for the info.

Thanks, sickofCFS - it was quite a severe bug (though could have been much worse!) and I don't know if my symptoms are due to the infection or due to the physiological effects of having been laid up in bed for so long. It's 13 days now since I came down with it so maybe I've got a while to go!

 

[justy]

Isn't that symptomatic of post-viral dysautonomia? I'm not sure about that, but it might be worth checking out the Mayo Clinic info on dysautonomia.

I'm just the opposite. My PEM is much worse if I don't rest a lot. I have a persistent HHV-6 infection, though, so maybe that makes a difference.

HI, will have a look at this, thanks. Its hard to explain by wrting, but i still do have to rest A LOT, i didnt mean that i have to keep busy, but that when i tried to reover by the completely resting 24 hrs a day method i went down hill pretty quickly. So now i mainly rest all the time with intermittent short periodsof activity, such as a 5 min walk, unpacking the dishwasher, picking some veg from the garden or ten minutes etc.

 

[leela]

Cloud,

Was it you who posted on another thread about going to the Pacific Fatigue labs being the best thing you did for yourself (regarding disability)?
I think it was you, sorry if I've got it wrong.
I'm asking because if it was you or anyone here on this thread, do you find that having learned your anaerobic threshold helps at all with pacing and thus
reducing the incidence of DPEM? I am thinking of endebting myself sufficiently to go there, but half the hope I have in it is to use the info to abate this problem.
Can anyone chime in on whether it's worth it in that regard?

 

[L'engle]

PEM... yes, exceedingly annoying. So I may be ok to actually do 30% of normal activity this week, but even doing that, I will likely pay for it by having a week where I can do nothing at all and everything hurts even more. Or it could be even later. I won't know till it's too late.

So I'm trying to enjoy doing a bit of stuff, but it's like having a demon with an adding machine sitting by you all the time, cackling away and running up bigger numbers onto your energy debt!:

"Leaving the house?! Ooooooooo, 10, 000 energy points, 2 days bed arrest, to be served at your inconvenience! Doing 2 hours of work..... hhhhhhaaaa.... 15, 000 energy points, and a migraine, to be served when you least expect it!!!"

(And you can see the adding machine paper spilling out and filling up the room as the demon adds more numbers on for everything you do! A number with a billion zeroes on the end indicating how sick you will be from doing something, while most people just benefit from their daily activity. sheesh.)

 

[leela]

a demon with an adding machine sitting by you all the time, cackling away and running up bigger numbers onto your energy debt!:

"Leaving the house?! Ooooooooo, 10, 000 energy points, 2 days bed arrest, to be served at your inconvenience! Doing 2 hours of work..... hhhhhhaaaa.... 15, 000 energy points, and a migraine, to be served when you least expect it!!!"

(And you can see the adding machine paper spilling out and filling up the room as the demon adds more numbers on for everything you do! A number with a billion zeroes on the end indicating how sick you will be from doing something, while most people just benefit from their daily activity. sheesh.)

Totally accurate, and hilarious, imagery! Thanks for the laugh today, L'engle! (Well, it'd be funnier if it weren't so durned true!)

 

[helen41]

Cloud,

Was it you who posted on another thread about going to the Pacific Fatigue labs being the best thing you did for yourself (regarding disability)?
I think it was you, sorry if I've got it wrong.
I'm asking because if it was you or anyone here on this thread, do you find that having learned your anaerobic threshold helps at all with pacing and thus
reducing the incidence of DPEM? I am thinking of endebting myself sufficiently to go there, but half the hope I have in it is to use the info to abate this problem.
Can anyone chime in on whether it's worth it in that regard?

I went recently and it was very worthwhile for me, but my main benefits were validation and being approved for LTD. They did give me suggestions re pacing and my anaerobic threshold, but it's been too recent for me to evaluate whether it is making a difference or not. The first HR monitor alarm I bought was so quiet it was useless, so the company is exchanging it, but I'm without one for now.
Urbantravels posted this link on another thread
http://www.cfidsselfhelp.org/library...nergy-envelope
It describes how to estimate your threshold, and quite honestly, if you are looking only for that information, I'm not sure you would be satisfied you got your money's worth at the Fatigue Clinic. There are other, cheaper ways to find that number.

 

[urbantravels]

I should chime in at this point to say I've now been wearing my heart rate monitor for 2 1/2 weeks - not all the time, but most of my waking hours. I arbitrarily chose 110 beats per minute as my "threshold". But I learned later from my physical therapist that was a good number for me, at 41, to stay below what would normally be my "aerobic" zone. I'm not doing anything very structured, just making sure to stop what I'm doing and rest a while if the buzzer goes off for more than a few seconds.

So far I'd say it's a VERY helpful tool for self-pacing. Maybe it's just dumb luck, but I haven't had a major "bad day" in the time I've been doing this. Some days I haven't done much of anything because even very slow walking would push me over my threshold: other days I've been able to go out and run an errand or two without setting the thing off.

 

[Dainty]

Hi Dainty - I think it's the built-in delay in the PEM that makes it so hard to establish a sustainable activity baseline. So frustrating! Did you find it was only deep massage that had this effect or did you then notice the 48-hour lag for other activities too?

I notice the lag every time I overdo it. The massage thing surprised me because I totally wasn't expecting it, but then I realized it makes sense...my body was treating it like too much exercise. But yes, the lag time is consistent for me. THat isn't to say I don't get exhausted during and immediately after and the day after, it's just that it isn't that characteristic, distinctive, PEM until 48 hours later.

I also testify to sometimes getting a "free pass" on PEM, which is always exciting but then completely unreliable as an indicator for next time, unless, of course, it keeps happening, in which case you can adjust accordingly....someday....

 

[SOC]

Cloud,

Was it you who posted on another thread about going to the Pacific Fatigue labs being the best thing you did for yourself (regarding disability)?
I think it was you, sorry if I've got it wrong.
I'm asking because if it was you or anyone here on this thread, do you find that having learned your anaerobic threshold helps at all with pacing and thus
reducing the incidence of DPEM? I am thinking of endebting myself sufficiently to go there, but half the hope I have in it is to use the info to abate this problem.
Can anyone chime in on whether it's worth it in that regard?

I got my testing at Hunter-Hopkins several years ago -- they were using the same process as Pacific Lab at that time, I think. It was the best thing I ever did other than the Valcyte -- and I don't think I'd have had as much success with Valcyte if I hadn't learned to pace appropriately for my body.

Before I found out my anaerobic threshold and started wearing the continuous heart rate monitor, I thought I was taking it very easy. Hah! I wasn't even close. It was a hard lesson, but the heart rate monitor was a huge help in retraining myself -- and also training the people around me about how physically limited I really was.

Once I trained myself, I very rarely suffered from PEM. I was very, very limited in what I could do, but I didn't live every minute with muscle aches and massive fatigue. I think I slowed my deterioration and even started to make some small headway. I could actually feel kinda okay most of the time-- as long as I stayed well under my AT.

So I'd say, yes, the Pacific Fatigue Lab testing is definitely worth it, especially so if you want to apply for SSDI because I think you get information that is pretty conclusive about your degree of disability. Maybe someone who's done the Pacific Fatigue Lab testing can verify that (or not).

If PEM is a serious problem, I don't think you can do much better than finding your AT and training yourself to stay under it. The difficulty, for me anyway, was facing reality and actually limiting my activity as much as I needed to. I found it very hard to give up so much and to find activities to keep myself busy without overdoing it. I think I've crocheted a thousand hats and a number of afghans trying not to go crazy sitting in a recliner all day, lol!

 

[Cloud]

Hi Leela.....that was Helen who shared about her visit to the Pacific Fatigue lab, and I see she commented. I haven't been there even though it's not far from me. Closest I got was a VO2 max with Dr Peterson. But that test is not repeated after exertion....it's just for baseline. Learning my anaerobic threshold helps maybe 50% of the time...the rest is unpredictable. I could probably use some of the heart rate monitor training.

Sickofcfs.....how do you use the heart rate monitor? Do you just watch it to not go over your anaerobic threshold? Mine for my age is 98....so, would it just be a thing of watching and learning to become aware of how much it takes to reach that point? Does it shock you or have a beeper, or something....like some kind of biofeedback? If it doesn't have an alert, it seems a watch would do just as well.

Dainty....I agree there seems a difference in definition when PEM usually lasts 2-3 days and a relapse can last months if not years. I guess the term "relapse" fits for me because the symptoms that flare up with PEM are basically an exacerbation of my usual everyday symptoms, which could be the same as saying, "relapse" (or maybe "PEE" for Post Exertional Exacerbation). Also, my PEM now lasts only 2-7 days which is fantastic compared to my past. I spent several years with 1-3 month long PEM. How could I even tell it apart from the everyday illness? I would go from severe....to extremely severe after any stress.

 

[leela]

Thanks, everyone, for chiming in on the AT topic--this is very useful to hear. Helen and Cloud, I have no idea how bad my brainfog must've been to confuse the two of you

I agree that this distinction between PEM, relapse, and our everyday level of ick is sometimes a tricky one to define. Though I think it's possible that PEM can cause, or be a precursor, or an indicator to a relapse if one's system, or stressors, are such that one can't easily bounce back. Either way it is most definitely a cardinal symptom. So is gut distress, and I'm always surprised by how the gut issues are either way down the list or not mentioned at all in descriptions or definitions of the illness.

 

[Cloud]

Thanks, everyone, for chiming in on the AT topic--this is very useful to hear. Helen and Cloud, I have no idea how bad my brainfog must've been to confuse the two of you

I agree that this distinction between PEM, relapse, and our everyday level of ick is sometimes a tricky one to define. Though I think it's possible that PEM can cause, or be a precursor, or an indicator to a relapse if one's system, or stressors, are such that one can't easily bounce back. Either way it is most definitely a cardinal symptom. So is gut distress, and I'm always surprised by how the gut issues are either way down the list or not mentioned at all in descriptions or definitions of the illness.

I agree on the GI contribution. I have always felt it to be central.....No science, just experience. No problem with the confusion Leela...that's expected around here.

Hope your moving goes smooth (I can hear Santana and Rob Thomas)....

 

[SOC]

Sickofcfs.....how do you use the heart rate monitor? Do you just watch it to not go over your anaerobic threshold? Mine for my age is 98....so, would it just be a thing of watching and learning to become aware of how much it takes to reach that point? Does it shock you or have a beeper, or something....like some kind of biofeedback? If it doesn't have an alert, it seems a watch would do just as well.

Your AT for your age is 98? You must be older than I think! Or maybe we're thinking of different measures or calculating differently.

My anaerobic threshold was determined 4(??) years ago at Hunter-Hopkins. The theory and testing may have improved since then.

The heart rate monitor Dr Black recommended is a continuous monitor with an alarm function. I set the alarm at 126 (my anaerobic threshold). Every time it beeped I was supposed to stop whatever I was doing and sit down (or lie down, if necessary).

It was quite an education. I alarmed walking across a room, halfway up a flight of stairs -- in all kinds of situations that were "normal" for me. I trained myself to walk very slowly, to sit whenever possible, to lie down after I went up stairs. I learned I had to wheelchair if I went out of the house. I wore that heart monitor all day for most of a year, I think. For several months after that, I wore it if I was going out or doing something different. Finally I was sufficiently trained that I was never beeping and I quit wearing it.

My heart monitor also calculated (supposedly) theI number of kCals I expended daily. I kept a record and discovered that I had a clear energy envelope -- even if I stayed under my AT, if I expended above a certain number of kCals, I had PEM.

On the positive side, I quit aching all the time and didn't live in a continuous exhausted zombie state. I didn't have flares or relapses as long as I stayed under my AT and within my energy envelope. Well, okay, I did flare if I got a bug, but not those, out-of-nowhere flares. I believe that I slowed my decline when I quit overdoing.

Another positive is that the alarm trained my friends and family to how little I could actually do. They could hear the alarm go off at the littlest thing, too.

When I started with the heart monitor I was teaching a robotics class for 12-17yos at my house. The kids (and their younger siblings) delighted at scolding me, lol! "Teacher! SIT DOWN! You're beeping again!" "Teacher! You're walking too fast, AGAIN!"

 

[SOC]

I agree on the GI contribution. I have always felt it to be central.....No science, just experience.

Now the GI symptoms are one group I have NOT had, thank goodness! Weird how we all have different combinations of symptoms, but the overall picture is same....

 

[Mark]

I just had a look at the Light graph. Amazing! Don't know how I missed that before.

As usual what jumps out at me is not the obvious - instead what jumps out at me as strange is the Multiple Sclerosis reaction: a huge spike in A2DA ONLY - and not a gradual curve as for the ME biomarkers, but a sudden one at 24-hours post exertion. That seems really weird.

Not what I would have expected at all: I would have suspected that MS would be in many ways very similar to ME, but none of the other markers spike for MS patients, just A2DA. Sounds like a big clue to what goes in with MS, but I've no idea what it might mean...

 

[Cloud]

Your AT for your age is 98? You must be older than I think! Or maybe we're thinking of different measures or calculating differently.

My anaerobic threshold was determined 4(??) years ago at Hunter-Hopkins. The theory and testing may have improved since then.

The heart rate monitor Dr Black recommended is a continuous monitor with an alarm function. I set the alarm at 126 (my anaerobic threshold). Every time it beeped I was supposed to stop whatever I was doing and sit down (or lie down, if necessary).

It was quite an education. I alarmed walking across a room, halfway up a flight of stairs -- in all kinds of situations that were "normal" for me. I trained myself to walk very slowly, to sit whenever possible, to lie down after I went up stairs. I learned I had to wheelchair if I went out of the house. I wore that heart monitor all day for most of a year, I think. For several months after that, I wore it if I was going out or doing something different. Finally I was sufficiently trained that I was never beeping and I quit wearing it.

My heart monitor also calculated (supposedly) theI number of kCals I expended daily. I kept a record and discovered that I had a clear energy envelope -- even if I stayed under my AT, if I expended above a certain number of kCals, I had PEM.

On the positive side, I quit aching all the time and didn't live in a continuous exhausted zombie state. I didn't have flares or relapses as long as I stayed under my AT and within my energy envelope. Well, okay, I did flare if I got a bug, but not those, out-of-nowhere flares. I believe that I slowed my decline when I quit overdoing.

Another positive is that the alarm trained my friends and family to how little I could actually do. They could hear the alarm go off at the littlest thing, too.

When I started with the heart monitor I was teaching a robotics class for 12-17yos at my house. The kids (and their younger siblings) delighted at scolding me, lol! "Teacher! SIT DOWN! You're beeping again!" "Teacher! You're walking too fast, AGAIN!"

That would be great with an alarm. Very much a biofeedback type conditioning. I agree with you that getting the Post Exertion cause for crashes under control would be huge. There are other causes for crashes, but physical exertion is by far the worst. How funny with the kids telling you to cool it. Did you set off the alarm with mental stress too? Were you able to increase your activity over time with use of this monitor?

I didn't think the typical halter monitor had an alarm. How can I get hold of one that does? Did you get yours from a medical supply store? I'd really like to give this a try but not too willing to pay a huge price for it. I don't remember where I got the formula for determining my anaerobic threshold now. I just remember it being 98 for my age of 56.....what formula do you use?

*Ok, just called a PT friend who said the formula is just subtracting age from 220. I remembered that part, but thought there was more to the formula....otherwise how did I get 98? I suck at math, but not that bad. Besides, if it were just 220 minus age that would be 164 for me! That's way too high! It takes a lot to get my pulse that high and if I did = serious crash.