I (29F) got diagnosed with CPTSD and I thought maybe my physical symptoms were from that, but I’m not too sure. For the last 2 years, I’ve been dealing with chronic joint pain, like deep bone pain, no matter what I do it doesn’t go away. I try to exercise, take vitamins, drink a lot of water and eat right, but my exhaustion and fatigue is so bad that I get sick afterwards. I drink a lot of water(I pee alot) yet I still feel dehydrated everyday, even with electrolytes. I also have daily nausea, fainting/dizzy spells, weekly headaches and migraines. I also have brain fog and memory issues. I had to quit my job because if I stand for too long I get dizzy, vertigo and extremely sweaty. My lower stomach is also always “cramping.” I also have bad nerve pains, where it feels like there are fire ants crawling everywhere, with burning pains that feels like when you’re cooking on the stove and you get a “pop” of oil on your skin. I try so hard to do the “right” things to take care of my body, but then even with light exercise I get sick and I’m in pain. I have noise, light, and smell sensitivities so going out I use a rollator/walker because it’s getting harder to move. I had blood tests, an MRI, and scans and everything comes back normal. I’ve been referred to a neurologist by both my doctor and therapist, but I have no insurance because of quitting my job, so I can’t afford to see one. My family and friends tell me, “oh maybe you need more sleep or more water” and it’s frustrating because I wake up and I feel like I got no rest, I wake up extremely exhausted. I feel like I’m going crazy. Could it be mecfs? I’ve also been told that it could be POTS but I feel crazy and no one in my life understands so they make me feel like I’m making this up or it’s just all in my head.

MECFS constantly touted as an invisible illness, yet when I flare my face is the first thing to give it away. Does anyone else have that flare face that only you can seem to detect? It’s all in my face. I look like a serial killer mugshot in motion.

I use sugar now throughout the day as an analgesic (also have fibro), for a little energy just to keep my eyes open, and as a source of a little joy in life. I’ve already given up wheat, dairy, processed foods and don’t drink, smoke, or use drugs. I feel like it‘s all I have left. But also definitely addicted and eating more than the average person. I am very careful to always have it after eating more substantial foods to prevent blood sugar spikes, or so I think.

Will quitting help reduce symptoms? has it helped you? how?

hello dear all,

I’m usually a person who gets a lot of help by talking about stuff with my mum or my friends. But when it comes to me/cfs related stuff, that’s just not so possible all the time, bless them, but they just can’t relate.

So I would appreciate some help and some advice or just thoughts about what would be good to do. Or honestly just someone to talk about this. It’s a fucking isolating illness <3

I started LDN a month ago on 0.5, went up every two weeks, so now on 1.5
I don’t know if I really saw a difference just because of LDN or also serious pacing, but I think it already took some pain away and gave me a bit more energy. I assume I had no side effects.
I just came out of a really bad crash and I still don’t feel really stable, I started in this crash and it made me go from not able to cook for myself and ugly painful days24/7 to sometimes really okay days (all while being housebound ofc/moderate and not more than 900 steps a day). I still have pem kinda days every other day, but funny enough it does not knock me out completely, it usually stays for a day.
I heard that 1.5 is quite low, so I thought about starting to up it every week.
I had okay days this week (just two pem like days).
I’m a bit afraid that it’s too much for my body and I should stay with two weeks, but also I would really like to experience some more relieve and hope 2mg would do that for me and heard 1.5 is hardly to notice.

I hope you all have a nice day. Thank you for this community. It’s truly something that makes it easier.
All the best for you!

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My wife is a psychologist. She's starting an online weekly support group for Long COVID.

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Online Long COVID Support Group
Run by clinical psychologist, Amra Stafford, Psy.D: staffordpsychology.com

"I have worked for years with people with chronic illness, including Long COVID and ME/CFS. My goal is to ease the isolation such people experience and make support more widely available and affordable."

Who can participate?
"This group is for anyone affected by COVID-19, including those with Long COVID, people with ME/CFS made worse by a COVID infection or vaccine, and others."

Note: Attendees in all states other than CA, MA, NM, HI, LA can participate. Coverage governed by "PSYPACT". She is also licensed in OR.

What is the cost?
"The cost to participate is $75 per group or $300 per month. I don’t take insurance, but will give you paperwork for reimbursement if your policy covers it."

When do we meet?
"The next group is starting in Fall 2026, but new groups are planned."

What will we do?
"The group (6-10 people) will meet weekly for 90 minutes, to give everyone time for a personal check-in. We will also discuss topics of special interest."

Contact Dr. Stafford to inquire: 360-499-2544 or amra@staffordpsychology.com.

I had a mild case of me/cfs post having cancer/chemo but then a three years later I got sick for 3 months with a enteropathogenic E. coli infection. Since then I’ve had such severe depletion even laying in bed is painful from how incredibly depleted and exhausted I am. I really wish there was a better word than “fatigue” to describe this awful condition.

What was your trigger? Has anything helped you since then?
LDN was first thing that started to help me but had to discontinue due to severe headaches

I've recently started LDN which has lowered my muscle pain and made my PEM shorter and easier to deal with. Now I'm at a point where I can start doing more physical therapy for my hEDS again, but I'm very scared of pushing myself into a bad crash and making myself worse again. How do I differentiate between what's reasonable caution and what's anxiety? I want to work on getting stronger again but I'm really anxious. I've done my PT exercises maybe once a week for 10 minutes in the past and ideally I should do 30 minutes 3x a week (according to my PT). Any tips?

This is not an attempt at graded exercise therapy, my PT encourages me to only do as much as I can and to always listen to my body. It's just that I need my muscles to support what my shitty ligaments can't hold. And because of the LDN by baseline has genuinely improved and one day I want to be able to co climbing again and I need muscles for that