Please clarify "post-exertional malaise"...

[Ella_14]

Does it mean you cannot tolerate any amount of exercise that increases heart rate/prolonged low-level activity? Or does the amount of exercise you can tolerate vary depending on severity of symptoms, etc.? And does everyone have a different threshold they can't go over before getting PEM?

TIA

 

[SOC]

Does it mean you cannot tolerate any amount of exercise that increases heart rate/prolonged low-level activity? Or does the amount of exercise you can tolerate vary depending on severity of symptoms, etc.? And does everyone have a different threshold they can't go over before getting PEM?

TIA

PEM threshold varies from patient to patient. And by a lot.

Just for reference:

Symptom Clusters
As stated earlier, the central feature of ME under this definition is post-exertional neuroimmune exhaustion (PENE). To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

“Characteristics are:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”

http://www.research1st.com/2011/07/25/me-case-definition/

 

[heapsreal]

PEM i think is really explaining the crash from over doing something that wouldnt affect a normal person?? And may take a day or 2 before it strikes and then increased cfs/me symptoms for several days or longer.

Some people though can be in a constant state of pem if they cant live within their boundaries, even for some who are bed bound and just doing basic activity like showering etc can take them outside their boundaries.

In saying this a crash can come out of the blue even if one stays within their boundaries, maybe some type of infectious reactivation maybe.

 

[Hope123]

Read the series by Jennie Spotila:

http://solvecfs.org/post-exertional-malaise-resources-for-you/

PEM can vary lot from person to person but the hallmark is exacerbation of that individual's symptoms with minimal physical OR mental exertion. By symptoms, I mean more than fatigue and pain. If you only have fatigue and pain as your PEM symptoms, then you can still have another illness. ME/CFS patients get more than fatigue/ pain; they also get sore throats, enlarged lymph nodes, flu-like feelings, insomnia, problems thinking, etc. And the threshold for PEM can even vary for one person from day to day or hour to hour. For example, if I have a cold, I will get PEM more easily and quicker than when I don't.

 

[Forbin]

Speaking for myself, the experience of “Post Exertional Malaise” comes on gradually and then peaks somewhere between 24 and 48 hours later.

For me, the exact nature of the “malaise” is somewhat difficult to describe. It is an amplification of many of the symptoms that are commonly experienced at a lower level 24/7.

There is a difficult to describe internal sense that your body is telling you that it is “strung out” and that you better remain at rest. For this reason, I think of it as a “flu-like malaise.” It’s somewhat similar (but milder) to the sensation one gets with OI in which you seem to be getting unequivocal signals from the body to “SIT DOWN, NOW!” In my case, there is also an amplification of a kind of internal “shakiness” – the sort of thing one feels when your muscles have been worked to exhaustion.

This is just my personal experience. I don’t know if it’s the same for others.

The Lights’ study from 2009 showed a striking increase in gene expression of certain metabolite detecting, adrenergic and immune function genes peaking 24 hours after CFS patients exerted themselves. There was no similar post-exertional elevation of the expression of these genes in normal controls.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2757484/pdf/nihms125894.pdf

 

[Ambrosia_angel]

Does it mean you cannot tolerate any amount of exercise that increases heart rate/prolonged low-level activity? Or does the amount of exercise you can tolerate vary depending on severity of symptoms, etc.? And does everyone have a different threshold they can't go over before getting PEM?

TIA

PEM is definitely not exercise intolerance. They are two different things. I used to think it was the same but I only have exercise intolerance as opposed to PEM. People with PEM can do the exercise but face the repercussions later over the next 24-48 hours after they exert themselves. In this time period exercise may be unbearable or just manageable but very difficult.

I have exercise intolerance where I can't exercise for more then a certain time period before getting the fatigue and weakness in which I have to stop. By exercise I mean walking up stairs and walking 4 houses down the road not anything extreme. Just very mild but enough for me.

 

[Ella_14]

Thanks, everyone, for the detailed explanations. Every response contributed a little extra info that's been incredibly helpful. I've been trying decide whether or not it would be worthwhile to see a specialist, and since I definitely get PEM/PENE, according to what I've learned here, I feel confident that seeing a specialist would be in my best interests.

It's almost a relief to know I fit the profile...it means there's hope for improvement with the right meds/treatments.

 

[Allyson]

I find my PEM can come on a day or 2 later after the exertion....not uncommon

Ally

 

[Mij]

Thanks, everyone, for the detailed explanations. Every response contributed a little extra info that's been incredibly helpful. I've been trying decide whether or not it would be worthwhile to see a specialist, and since I definitely get PEM/PENE, according to what I've learned here, I feel confident that seeing a specialist would be in my best interests.

It's almost a relief to know I fit the profile...it means there's hope for improvement with the right meds/treatments.

Let us know which treatments or meds help with PENE.