Yep. If you have been doing anything out of your ordinary routine and then you crashed, then probably the new activity is to blame. I often forget what I did that caused it. It always comes 2-3 days after whatever fool thing I did. Rest up. I've not found any way out of a crash but to rest more until it finally fades. Blessings on you.

I've found that doing a new exercise, or just trying to take up regular short walks, can be fine for maybe a week or more, not seeming a strain and then for some unknown reason, it's too much for my body to cope with and I crash. I have no idea why and it's extremely frustrating.

Thanks, you guys, that really helps me feel better about it. I know I'm not imagining it. It is good to have support. I hope more comment on this topic.

I have learned to listen to my body . Although it is very hard to be held back by your own body , when you want to go out and about and do normal daily life things, you have to rest when your body says rest. Unfortunately , with this illness... you have to change your lifestyle a lot . It can be very upsetting to not be able to have any energy to get up and go like I could before I got sick. I feel trapped inside a zombie body that always wants to be in bed. But the real me is happy energetic and loves to go out! It's so hard living with this illness.

The pathophysiology of the post exertion fatigue is a complete mystery to me despite the fact that I am a pathophysiologist! Unfortunately, it’s also a complete mystery to the rest of the research community. As you noted, there is research going on to understand it though there’s a lot of fear about what the Trump administration will do to the NIH budge (won’t get into that!). Be assured, you are not crazy and yes, activity will impact how you feel and even minimal exertion at the wrong time can make you feel worse. Medically speaking, I can only assume this is because your cells (all of them) have not achieved the level of rest and regeneration they need to function normally. Hence, even minimal exertion will lead to systemic dysfunction. I’ve found that on days when I get a really good nights’ sleep (almost never!) I can clearly do more the following day. Still, it’s never limitless and if I push too hard I usually feel worse 2-3 days later. I continue to be fascinated by this. Why 2-3 days later and not the following day? Sometimes I actually feel better the following day like I’m supposed to after a little workout but inevitably the overwhelming fatigue sets in. Some days the low grade peripheral pain and fatigue is more obvious early on and I know that I need to be careful on those days not to overdo it. That said, lately I’ve been pushing myself beyond my limits, determined not to crash. I’m doing so because two of my sons have purchased homes that need remodeling and I’m determined to help them no matter what. This has been an interesting experiment. I basically feel like I can barely get out of bed in the morning, then start to feel a little better mid-morning, go do my insane sanding, scraping and painting for 3-4 hr and then basically feel like a brain-dead zombie the rest of the day. I don’t recommend this to anyone! It’s possible I may push myself into the bed ridden dead zone but I’m determined not to let ME run my life! I guess I’ll find out what my limits really are soon! Oh, and regards the depression, I hear you. Only for me it’s more apathy than depression per se. I just don’t feel like doing anything that requires thinking like posting or paying bills! Today is a rarity. Well, off to abuse myself! I’ll let you know if I survive!

Thank you for your reply Butterfly and Weakfish.

Butterfly, Feeling trapped inside a zombie body is a very good description. of PEM!

Weakfish, we're fortunate to have you here with your expertise. Feeling worse 2-3 days later is very familiar to me. I know what you mean the following day after activity. I always feel really good and erroneously think I must be mistaken about having CFS. But then the second or third day, there is a painful reminder that I do have it. Please be careful, Weakfish, about this insane level of activity you're doing. I hate disappointing my kids too, and have gone beyond my limits only to land in that "bed ridden dead zone" you talk about.

My answer to you is yes, yes, and yes! After nearly 30 years of this, I still have trouble accepting my limited lifestyle. I still get terrible anxiety and cry from loneliness, because this disease is so isolating. Most of the time I have to remind myself, when I'm crashed, "it lifts when it lifts." I so hate hearing people tell me, "you sound so good" on the phone. They then assume I'm over whatever it is I had. I still get that from people who should know better by now. The thing I find most ironic is that when I'm so exhausted and brain dead that I'm barely conscious, and that can be for days, my "mood" is okay. It's when the crash is lifting but I can't quite move yet that I get depressed. Because I know what's coming. By now, I should know. I bristle now when people tell me I'm "negative" when I'm stating something that is just REALITY: like, there's no cure for what I have. Or, I really can't get off the couch. It's NOT that I don't want to, it's that I CAN'T. I know better than to complain to anyone outside of these online groups. I've learned to project positivity when I'm working. But, grrrrrrrrrrrrrrrr, when I don't accept an invitation because I'll catch hell if I when the time comes I can't attend whatever it is--and the person tells me I need to be more positive. . . . . . .....yikes! That's the Catch-22 of them all.

Thanks, WolfgangMinerva. I can relate to what you're saying. I go to bed each night scared of what tomorrow will be like. There's no planning anything. And the loneliness and isolation is very hard!

I'm crashed and in the middle of a downsize and move so I'll have to keep this short... I often think of our illness as being like the saying "if you want to dance, you have to pay the piper"... So, dance if you choose to..but be aware that some number of hours later...you'll pay. Maybe it's worth it. Maybe it's not. Only you know and can begin to get a handle on making choices based on it.... wishing you peace

Thank you, Nina1959. To me it's never worth having to pay the piper. Not after this last crash. I way, way overdid it and it set me back about three weeks. So, five days of overdoing it vs. the three weeks it set me back wasn't worth it by any means.

Wolfgang and all, I SO understand that "catch 22" experience. I am so sick of friends and GFs telling me I have a negative attitude and that is the CAUSE of my health issues. I do believe that our mind can help with some things about this, and even though I ascribe to many of the Science of Mind beliefs, too often it can turn into a blame the victim mentality, from ourselves and others. I even in couples therapy for awhile had to listen to my GF tell me the main problem with me was that I mentioned my health too much. No answer to my many years of quandary when someone asks or wants me yo do something with them, should I lie and make up a reason that doesn't bother them so much, give them no reason at all, or suffer the rath upon telling the truth. Even just saying I don't feel well, bothers peeps after awhile, or for those new to me, they ask consoling questions but then they wind up learning more than they might want to know, and then there is judgement and a price to pay socially....like I never hear from them again. I recently took a class in metaphysics by a psychic I've had readings with and liked, bug in the first class she was telling the story of how wonderful her grandmother was who died of very painful ALS, but always had a smile on her face and never told any family she had it and was dying until she was obviously near death...this was her example of strength and a positive mentality. To me, that was an example of a very sad life, feeling like you had to die in isolation with no ones compassion. I went to a few of the classes but when I was feeling in great pain, I knew that instructor was not safe to be around emotionally and dropped the class. And I doubt I will ever tell her due to the shame I feel inspite of the other part of me who is firm in what I believe. So glad to know this group is here! will help me be able to share less with those who can't understand anyway.

Hope to Heal, I like all the responses you've received, and I agree with them all. I'm also learning as I read through them. I am familiar with how my body crashes but lately I've been experiencing more fatigue whatever I do, so I'm having that checked out. It can all be very frustrating and I am forced to listen to my body whether I like it or not!! I wish you well with all of this.
Megan 54, When I read your reply to Hope, it resonated with me. I attend a Science of Mind center also. (which is what it sounds like you were describing). It is definitely a 'mixed bag'. On the one hand, it's inspiring to hear positive thoughts and affirmations. At the same time, when you're dizzy or feeling weak and such, it's hard to take it in. For me at times, impossible. There's also a tendency like you say, to feel one may have caused these things by negative thinking. That's a real affront to anyone. I'm glad you dropped the class. I know my parents' generation really stressed, keeping a 'stiff upper lip' at least mine did, but I too find that isolating and not really healthy. Sorry to veer so much 'off topic' here, but I was drawn to what you had to say.