New to the group, and I have more questions than answers. I have found that combatting my chronic fatigue is synonymous with combatting bacterial and even more-so fungal infection. Reading your post here, I cannot help but think that your Gastro-intestinal dysbiosis has repaired itself sometimes in the past. Do you also suffer issues in your GI-tract like pain, diarrhea, massive bloating... Anything that can point to an issue in your gut? I ask because the best results I have had are when I combat fungal infection in both GI and systemic (requiring different RXs). Seems to be getting much much better, just slower than I could have dreamed.

Can you expand on what kind of activities send you over the threshold and the amount? I struggle to with creating the proper balance between being productive and being realistic to my disorder. I try to exercise for good health, but I think I have exacerbated my condition from it. Like playing on a trampoline with my kids a week ago sent me out of commission. I though I could get away with it as I had done some explosive uphill running.

I know, doesn't sound like Chronic fatigue, but I came from a place where my health had me miles above others. I was a martial arts instructor and hadn't lost a fight in 8.5 years. I think that is what has my experience different than others. I do have days that I don't even leave home anymore.

Hello, thank you for joining us. We could all benefit from the wisdom of someone who has been around the block, so to speak, on all of this. I got it when I was young, after a bout of mono. I'm in my 40's now and have never worked full-time because of this illness. I did manage to graduate from college, but my life has been very limited in many ways. We're fighters, though. We press on and make the best of what is set before us. I've been home a lot. I usually just get out once a week for church and that's about it. I'm so grateful for this group. Their encouragement keeps me afloat. So, welcome to you. Friend some people and get to know us. It's a great group.

We get depressed because we have lost so much of what our lives used to be. The depression is secondary, however, to the organic illness that is CFS. Just don't make the mistake of thinking that mono/Epstein Barr virus is the cause. That was ruled out in 1991, yet doctors, at least around here, are acting like they just discovered something. My CFS was triggered by mono, but currently I have 0--ZERO--antibodies for the virus. That's weird enough. But since that doesn't fit into the "norm", doctors just ignore it. Anyhow, I no longer get mono-type systems. But I sure do still have CFS. I get all kinds of other infections. And I just spent an entire week in bed.

Thank you, master4thdegree and triunfadora, for your kind responses.

Master4thdegree, I have recently gone gluten-free (9 weeks now), and it really helped my digestive track. I also think it helped depression. It was really rough going off gluten as far as withdrawal symptoms! I wonder if that turmoil in my body triggered CFS flares as I've had so many during that transition. Hopefully, it will even out and my body will adjust. The activities that send me over the threshold are anything outside my routine (cleaning one area of the house each day and a 10 minute walk). Doing too much cognitive work can get me too. I am housebound, but mostly due to agoraphobia. However, CFS factors into wanting to stay home. The doctor in charge of the study group for Epstein Barr told me, "your cells want to stay home." There are days my fatigue and emotions are so bad, all I can do is go to bed. I read something on the internet about new findings. Seems muscle strain can cause a flare: https://www.sciencedaily.com/releases/2016/07/160718194125.htm

Triunfadora, I hope I have wisdom for others! I wish I could get out for church once a week like you do. That is something I really miss.

WolfgangMinerva, Chronic Fatigue Syndrome is such a vague name and can encompass so many root causes. I do believe my root cause is Epstein Barr Virus. I like the new name for CFS (Systemic Exertional Intolerance Disease). "Exertional Intolerance" hits the nail on the head for me.

PS to last post to WolfgangMinerva...Meant to thank you for your response. You are right about depression being because we've lost so much to what our lives used to be.

Not overdoing it is one of the hardest parts about managing CFS for me, especially since what I can actually do is extremely limited. I too am basically housebound and sorely miss being able to attend church. On a good day, I might be able to do a 5 or 10 minute job after breakfast in the morning. Other than that, my regular activities are limited to dealing with my meals and the occasional outing to an appointment or the shops. So when it comes to my "plan of action" as you asked about, my plan is inaction. I've had to learn to live with housework that hasn't been done and ignore it. Not letting it bother me or make me more depressed than I usually am is the hardest part.

Thanks for the reply cmiat. I need to learn to live with housework that hasn't been done and ignore it too. Very hard for me to do. I'm what they used to call a "Neat Freak." Now they call it OCD...ha! I fear I may have overdone it this morning with sweeping the carpet in the living room. The carpet is thick and the sweeper is hard to push at its highest setting. Maybe if I rest easy the remainder of the day, I'll be okay. Isn't it hard to be in constant fear of a flare?

Hope2Heal, there's a difference between a trigger and a cause. No one yet knows what the cause of CFS is. Epstein-Barr is a common trigger, and it was mine, too. So is the flu or other acute viral infections. So many people develop CFS after all kinds of triggers.

I, too, hate looking around my house. The difference is, I've been suffering so long that my house is a hopeless disaster. It adds to my depression. It's very hard to accept that you can't do anything that requires heavy exertion without "paying for it" later. We all learn how much rest we need in advance of exertion and how much we'll need afterward. Yes, it sure is hard. After almost 30 years I still can't accept it. I wish I had taken care of my house a day at a time back when. Before it got out of hand.

Thank you, WolfgangMinerva, for clarification about Epstein Barr being a trigger instead of a cause. Sure wish the cause could be discovered soon!

Good day and welcome - How to avoid PEM... I'm not sure it's possible unless one makes life so simple and slow that there is never a need to overexert. It stinks for sure, after 24 yrs I know this too...but sometimes you know something is coming up so you plan for it. We're in the midst of a move right now. In my pre-CFS days I could do the packing, cleaning, etc in a month tops. This time I alloted 5 months and hired help a few days. I'm still worn out so badly. I think it's a choice you have to make. Do the fun/gotta do thing - and pay for it... or skip it. Really not much else we can do.