← Return to Does anyone else feel like exercising makes your symptoms worse?

Discussion
Comment receiving replies
@rinadbq

The frustration, confusion and fear of these "crashes" is horrible!! For me, this is a leaden, overwhelming, incapacitating exhaustion (not fatigue) combined with headache/nausea/light & sound sensitivity, muscle pain (not aches), chills. I will loose an entire day essentially bed/couch-bound. LOTS of water with an electrolyte replacement (Propel or Gatorade), a dark room, and time gets me through. I learned abut pacing from OT. I keep a diary of my physical and cognitive activity each day. I started with limiting myself to only 2 hours of each per day. I can do 4-6 hours total each day now. Laundry, cooking, errands, wash/dry/style my hair count as physical work. Finance, legal papers, planning count towards brain work. I know from my diary that when I exceed these limits, I crash. For any kind of 'event' (social, entertainment, travel) I do nothing but shower, pick out my clothes and rest the day before, and nothing the day after to survive the occasion.
IM if you would like more details

Jump to this post


Replies to "The frustration, confusion and fear of these "crashes" is horrible!! For me, this is a leaden,..."

Hi there, I just have to comment because what you are describing is exactly my situation, in particular the effect of cognitive effort. If I have an event, same-all I do is shower at the most, and not even a hot one because that would take my
energy. I'm sorry you're going through this. I was doing better, and I am an OT : ) and thought I could go back to work part time after 8 weeks rest, but had another crash and back to near square one.

Hi, I see that you wrote this over a year ago, but if you’re still willing to talk about it, I would love to. It sounds like your situation back then is very much like mine for the last 3 years since I got it. I finally got much better last fall. I was able to be more independent and I adjusted to a new normal. However, I’m in a significant relapse now. I’m starting over, and having a hard time pacing - I keep crashing. I know all about PEM and I’ve had an OT, but still I am not getting my pacing right this time around. If you are willing, would you please IM me. I think it would help to talk it over with someone who’s actually lived it in a way that sounds very similar to my experience.

I crashed this morning and I never have felt anything like this. Legs feel like lead and I have to walk so slow. I know today I will need to focus on resting. I don’t know what to do. Can someone tell me what they do when they have to rest? I feel some relief if I just sit on my bed and read.