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PEM and pacing

Wonko

Senior Member
Messages
1,467
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The other side.
@jleblanc3

IMO, and I'm not medically qualified, at all, what you're experiencing in the first part of your post doesn't sound like PEM, at least as I experience it. It's ringing bells with me, it sounds a lot like a typical overload reaction during a virus, but obviously not being medically qualified or even a virologist.......

There seems to be a terminology discrepancy going on as well.

The "Yesterday" section of your post sounds like a mental fatigue reaction to me, it's very common and not specific to M.E. as far as I am aware. Quite why it diminished bodily symptoms is probably outside of my recent experience, and whilst I can see it appears to be important to you I'd rather not try and draw parallels or extrapolate from my own experience when my own memory for such things is a teeny bit iffy, and I'm sailing too close to line of the "no medical advice" rule, and probably others, as it is.

TBH it sounds a lot, to me, non medically qualified me, as if you may still have an active virus of some sort, or possibly have PVFS. That could easily explain the electrical overload symptoms (tingling etc.) and the sensory overload symptoms (noise/light sensitivity/fog).

My advice for either virus, PVFS or M.E. is the same as for virtually any illness, rest until recovered, if something makes you feel worse, stop doing it.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
@jleblanc3

TBH it sounds a lot, to me, non medically qualified me, as if you may still have an active virus of some sort, or possibly have PVFS. That could easily explain the electrical overload symptoms (tingling etc.) and the sensory overload symptoms (noise/light sensitivity/fog).

My advice for either virus, PVFS or M.E. is the same as for virtually any illness, rest until recovered, if something makes you feel worse, stop doing it.

Do you think the description of tingling and sensory overload is not typical of ME PEM? I still sometimes feel like there is some sort of virus that gets reactivated as I experience PEM.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
Do you think the description of tingling and sensory overload is not typical of ME PEM? I still sometimes feel like there is some sort of virus that gets reactivated as I experience PEM.
I'm not saying that they aren't common in M.E., they are, at least for me, and not just when PEM'd.

But there is a difference from the way symptoms that have the same description I have now feel, to the way it used to feel, when I had a knock me down virus, 30 years ago, and the way it used to feel better matches the OP's description.

I suspect, again, with no medical knowledge, that the difference is simple, one is 'caused' by the effects of fever and inflammation on the nervous system/brain and the other is "caused" by the effects of just inflammation - one is "normal" the other is not - or some other wacky made up rubbish. I'm probably completely wrong, I normally am, but the 2 things are different, even though the words used to describe them are similar enough so a person who hasn't experienced both wouldn't be able to tell that from the description.

It is difficult to be sure coz, it was a long time ago, the OP's terminology is, in part, different from my, or googles, understanding of the terms, and after all, I am not feeling it, he is. But...his description doesn't say PEM to me, it says active virus. Just my, completely unqualified, opinion.

I'll shut up now, probably making a fool of myself.
 
Messages
6
Thank you all for your responses.

I wanted to bring muscle pains (myalgias) into the conversation at this time. I seem to have mild myalgias in the morning that seem to progress to moderate as the day goes on. They seem to flare after use and primarily in the legs and sometimes in the arms. At rest it takes approximately 20-30 minutes for them to disspiate. I don't really feel them until I am not moving and then they get a bit angry. Is this typical of ME/CFS and how do you try and mitigate the irritation of them? I am not sure if that's a fair question but I am just trying to get some understanding on how to intepret my symptoms.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
I tend to ignore any non severe pain throughout the day, and just put up with it. At night I use a combination of co-codamol, gabapentin and sometimes oramorph to cut the pain down enough to allow me to get to sleep. I also take a couple of supplements to assist with the process of getting to sleep, but you haven't as far as I know, mentioned sleep issues so they are irrelevant ;)

edit - if the pain/sensation is above a certain level or of certain types I will generally rest, it's a play it by ear thing, I know what level of disturbance is normal, whats just noise, and whats indicating a problem that has to be addressed now or I'll lose functionality. Problem is I have no idea how to describe them, and even if I could, you're driving a different body than I am, it's sensations/warnings may very well be different.
 
Last edited:
Messages
50
Thank you all for your responses.

I wanted to bring muscle pains (myalgias) into the conversation at this time. I seem to have mild myalgias in the morning that seem to progress to moderate as the day goes on. They seem to flare after use and primarily in the legs and sometimes in the arms. At rest it takes approximately 20-30 minutes for them to disspiate. I don't really feel them until I am not moving and then they get a bit angry. Is this typical of ME/CFS and how do you try and mitigate the irritation of them? I am not sure if that's a fair question but I am just trying to get some understanding on how to intepret my symptoms.

My understanding of PEM is that worsening of the symptoms should last at least 24 hours, so I don't know if I would call that PEM. Your description of pain after activity reminds me of neuromuscular diseases (but I am not a medical professional). Has your doctor looked in that direction?