Is this post exercise malaise?

[Lyra]

HI
About 5 yrs ago I started to experience fatigue and serious muscle stiffness just after exercising (like 10-30 minutes after) but would not get the normal 24 hours muscles stiffness. I would also feel pretty groggy the morning after any serious exercise-with my whole body feeling like I'd been hit by a truck (still no specific muscles stiffness) Then more recently-within the last 2 yrs- immediately after exercise I would feel almost drunk-very clumsy and groggy and would need to lie down.
Now I really don't have the energy to exercise like that-so I don't know if I'd still have the same response. I also have noticed within the last say 6 months that after I eat breakfast I'm spent and if I don't keep moving I need to sleep. I only eat 2 eggs (no bread) and yet I still feel so wiped out. This is happening within minutes and I don't think it's blood sugar as there isn't time for a blood sugar reaction and I have had problems with being hypoglycemic my whole adult life and I know what that feels like. This feels entirely different-like I've been drugged.
If these symptoms are, in fact, pointing to CFS/ME and I'm still mostly functioning then what should I do to treat it as soon as possible? Is there anything I can do?

 

[vamah]

Yes, definitely PEM. I feel the same way -- like my arms and legs are full of sand -- after even small amounts of exertion. I don't know of anything to treat just this symptom. You need to find the underlying cause (infection, etc.).

 

[peggy-sue]

This sounds a lot more like exercise intolerance than PEM.
PEM hits a lot later and is an exacerbation of all ME symptoms.
I can't help regarding exercise - I can't do any. Very few PWME can. The problem is our bodies cannot do anything aerobic.

PEM stands for post exertional malaise. Not post exercise. There's a big difference.

 

[Seven7]

This was corrected for me after I started midodrine and florinef (OI treatment). I think my PEM varies too and it used to be as fast as yours. In my opinion I think PEM is after ANY activity, exercise included.

 

[peggy-sue]

I get serious pains if I try to do too much or go aerobic, and I can collapse at this time.

It's a completely different thing to the exacerbation of all symptoms, with a big reduction in baseline functioning which now can be up to a fortnight later - and lasts for weeks. It used to appear earlier. As I've been ill for longer, the time delay has grown and the time PEM lasts has grown too.

The whole point of PEM as a diagnostic criterion is that the suffering involved is delayed.

 

[vamah]

"The whole point of PEM as a diagnostic criterion is that the suffering involved is delayed."

I'm a little confused. I had thought that immediate onset of fatigue,muscle soreness, etc. after exertion -- rather than feeling it the next day, as a healthy person would -- was a symptom of PEM. Also that it lasts much longer -- days or weeks. Am I getting two different things mixed up? Or can PEM manifest differently in different people?

 

[peggy-sue]

I think you're a bit mixed up.
The immediate effect (from my own and many others' expericence) of exercise or overdoing, is the pains that appear because of rapid lactic acid build up - because of the body not being able to do aerobic activity.
I can't comment on fatigue - I don't get fatigued.

Normal "feeling a bit rough" the next day after exercise is because of pulled muscles that aren't used to it - this feels nothing LIKE exercise intolerance (inability to go aerobic) or PEM.

PEM will manifest differently in folk whose symptoms are different. Some will get swollen lymph nodes, (I don't) some will get headaches (I don't). Some folk's brains turn to mush (mine does), some folk will leave the washing wet in the machine for another week because they're too weak to get it hung up without collapsing (I do).
Other folk are put back in their beds in darkened rooms.

 

[Valentijn]

"The whole point of PEM as a diagnostic criterion is that the suffering involved is delayed."

I'm a little confused. I had thought that immediate onset of fatigue,muscle soreness, etc. after exertion -- rather than feeling it the next day, as a healthy person would -- was a symptom of PEM. Also that it lasts much longer -- days or weeks. Am I getting two different things mixed up? Or can PEM manifest differently in different people?

PEM is a full-body symptom that hits like a truck the following day. But there can be other symptoms triggered by exertion.

Some of the more immediate symptoms, especially cognitive ones and light-headedness, are probably related to blood pressure problems. In addition, muscle twitches and aches can set in pretty much immediately, as well as muscles ceasing to work or working poorly (sometimes noticeable as walking funny).

But my experience is that those immediate muscular symptoms only manifest in the muscle that was being used too much, unlike PEM which hits you in pretty much every way imaginable.

 

[vamah]

So, is there a term for IMMEDIATE severe fatigue and muscle pain after doing something as simple as carrying in the groceries or is that just par for the course with CFS?

 

[peggy-sue]

That's just exercise intolerance. And par for the course with ME. (I don't use cfs. I don't have fatigue.)

I agree with Valentijn completely in this:
"But my experience is that those immediate muscular symptoms only manifest in the muscle that was being used too much, unlike PEM which hits you in pretty much every way imaginable"

 

[Sparrow]

I have that distinction too, where there is a super weak, sweaty, foggy, shuffling, exhausted period right after doing too much, and then the 24 hour delayed hit-by-a-truck, super sick, just eating is exhausting stuff that lasts for days or weeks or what have you, depending on how bad it was.

 

[Seven7]

My PEM used to start as soon as 2 to 3h after exercise. Lymph pain, Brain fog the worst and a buzz in the head and general malaise. They say Pem can start anywhere from hours to 72h. Each case is different. Also My PEM was worse on vertical like walking that if I would do recumbent exercise.

 

[kaffiend]

So, is there a term for IMMEDIATE severe fatigue and muscle pain after doing something as simple as carrying in the groceries or is that just par for the course with CFS?

I used to experience crashes during physical activity (e.g., grocery shopping or walking around). Magnesium malate and adrenal cortex extract or low-dose hydrocortisone was very helpful. I still separately experience PEM starting at 24hrs after activity and continuing for 2-3 days.

I mostly get the wired/tired PEM these days - mindfulness/meditation and an alpha2 agonist medication (guanfacine) helps with this to some degree.

 

[Sea]

Welcome to the forum Lyra.

What you are describing could be ME/CFS but there is not enough there to say for certain. You don't indicate whether this exercise is something that previously you tolerated. If you're not getting muscle soreness 24 hours later that does seem to indicate that the exercise you're doing is not beyond the limitations of your physical fitness. You need to be investigated for lots of options - thyroid for example, that are known to interfere with energy and have symptoms that overlap with ME.

Before trying to find out how to treat you really need to find out what is wrong.

 

[alex3619]

That's just exercise intolerance. And par for the course with ME. (I don't use cfs. I don't have fatigue.)

I agree with Valentijn completely in this:
"But my experience is that those immediate muscular symptoms only manifest in the muscle that was being used too much, unlike PEM which hits you in pretty much every way imaginable"

That is perhaps a good way to distinguish between exercise intolerance and post exertional malaise (also called post exertional neuroimmune exhaustion). Exercise intolerance is immediate and localized to muscles that do the work, though this can include the heart etc. Post exertional malaise can be all over the body, even parts that were not exercised. Its a different phenomenon. However it seems that there might be different PEM subgroups: we do not yet really understand it.

However then there is the issue of what happens to the brain when exercising. I would not call our brain response either exercise intolerance nor PEM. We lose blood to the brain during exercise, something that was first noted in the 1980s. So what do we call that? Secondary exercise intolerance? Something else? If we call it exercise intolerance then we will be at odds with how that term is normally used.

 

[vamah]

Sparrow -- That's the same for me. Usually about halfway through the grocery store I feel dizzy and sweaty and feverish and I have to lie down when I get home. But I also get delayed reaction exhaustion that lasts for days after I do way too much (like after Thanksgiving).

 

[Seven7]

Sparrow -- Usually about halfway through the grocery store I feel dizzy and sweaty and feverish and I have to lie down when I get home.

That one sounds more like an Orthostatic Intolerance (OI) crash! Just a thought.

 

[vamah]

I wasn't familiar with OI, but that is a possibility. My bllod pressure has always been on the low side -- even when I was pregnant -- which probably doesn't help.

 

[Seven7]

Aldesteron hormone can be tested. In my case the Dr gave me florinef without testing just to raise BP and I saw a big difference, it does not work for everybody (you have to make sure to use salt and water, supplement potassium if needed).

 

[WillowJ]

PEM would typically feel flu-ey (influenza without upper respiratory congestion unless that's part of one's normal symptom complex, not the "stomach flu") and often include shortness of breath. Generalized muscle weakness would be present. Anything else from one's normal symptom complex can be worse also. For many of us that would include sensitivity to light/noise/etc.

Stiffness I think is related to something like fibromyalgia, rheumatoid arthritis, polymyalgia rheumatica, etc., although I think OI/POTS might be able to do this as well???

Feeling bad right after eating can be OI/POTS. http://www.dinet.org/
Though it could also indicate intolerance/allergy (wheat/gluten is a good guess, but eggs are another common intolerance/allergy).

best wishes, Lyra . I hope you figure it out and get some decent treatment.