Sherri Koehler (she/her)4d ago

Me: Damnit, my heart is racing again and I’m a little nauseous.

My wife: I think it’s post-exertional malaise, you didn’t really rest after our hike.

Me: No, that’s “extreme fatigue”!

My wife: No, it’s not just that, it’s feeling like you’ve got the flu!

Me: searches for “post-exertional malaise + tachycardia”. 2nd result is an article about EDS and post-exertional malaise.

Oh.

Since I’m not laid out flat like the time I had pleurisy, which is what I consider to be “extreme fatigue”, I’ve never considered that I might deal with post-exertional malaise.

When you look up this condition the first description is almost always “extreme fatigue”, which I don’t think I have. Or, I have a very difficult time recognizing it because I feel the need to stick to my routine of getting shit done lest I feel like I’m a lazy jerk.

Apparently the triple-whammy of pet loss, a bigger hike, and tree sex filling the air (I’m allergic to trees, nearly all of them) means I feel really lousy. Chills, shaky, heart racing, and nausea, but “average fatigue”. My wife finally assured me she could make dinner without my help.

Show threadSherri Koehler (she/her)2d ago

I felt so lousy yesterday that I canceled my classes for the rest of the week and admitted my wife is right.

I think I resisted label of “post-exertional malaise” because the description almost always starts with describing someone as bed bound. Since my pain is worse when I’m not moving I currently am pretty uncomfortable in bed, it’s why my sleep is disrupted.

Yes, I am all too familiar with the knowledge that many people with #hEDS also have sleep apnea. However, I have been saying for a few years now that I would like to have treatment for the advanced degeneration in several joints treated since it is very obvious that pain is waking me. Next Tuesday I finally begin the process to have a nerve block, which several providers hope will provide significant relief.

I’m also so tired of hearing “central sensitization”. Until my multiple obvious orthopedic injuries are adequately treated I don’t want to hear that phrase again, if ever. It absolutely makes some providers think there’s no reason to check for other reasons for pain.

Show threadSherri Koehler (she/her)2d ago
Ranting aside, I am humbly accepting advice for recovering from post-exertional malaise. #PEM #hEDS
Show threadAudrey E.
@PDXyogini ‘Enforced boredom’ is what’s worked for me — basically do way less than what I think I might have energy for until small tasks don’t make me tired. It sucks but I try to queue up something fun to watch while I’m recovering.
Apr 9 at 6:42pmWeb
Show threadSherri Koehler (she/her)1d ago
@audrey thank you! Even if my internal response amounts to, “UGH! We hates it!”