Hi Everyone, I’m trying to gather resources on childhood onset ME/CFS. I’ve been concerned my friend’s daughter has it. Her daughter has many things since she was tiny and carries diagnoses that are often co-morbid with ME/CFS: dysautonomia, Ehler’s Danlos, and she’s AuADHD (which I know isn’t exactly co-morbidity, but y’all know how tricky this illness is). My friend is a wonderful parent and I’ve been gently talking to her about the possibility of ME/CFS. She is ready to receive the info! I’m trying to pull things together as much as my brain will cooperate. If anyone can help with links / resources / personal childhood onset stories that would be great! Thank you for using your energy on this.

When I’m in the depths of a flare up I can’t remember what it feels like to not be in a flare up, and when I’m feeling good I can’t really remember what it feels like to be in a flare up nor can I relate with the person that I am when I’m in one… does anyone else feel this way?!

I am fatugued very much so doing anything feels like a mountain and I lay in bed 95%

BUT I can still walk to places but crash in bed after. When laying down I have sometimes tingling fingers or arm and chest pain but not always

Could this not be ms? Also blurred vision sometimes when realy tired...

Im Just in option land rn Cfs Ms Fybromalgia Or even a severe burn out

I dont know anymore...

Dosage may vary for individuals and some of these medications may not be appropriate for all. But for me, they have been a life saver. Specially LDN, Advil or Celebrex. I do also occasionally take Tylenol 3 which contains codeine (an opioid) which I found helps bust my PEMs on bad days. However I no longer take opiods due to interaction with LDN and harmful effects in the long run. I've also found Acetaminophen is not a very effective pain killer at least for me.

Hi! What are some media that's gotten you through the days, without aggravating your nervous systems! I don't know if I'm just incredibly sensitive (or maybe we all are, but the office gives me energy like hives, Harry potter makes me weep for dysfunctional family, and any movie with a hard plot is hard.

The theme is that throughout the experience it there's some feeling of safety, peace, slow. The stakes can be super low or so absurd it's chill in presentation.

Some I've enjoyed are

Movies:

Good morning (1959) (on yt)

used cars (1980)

back to the future 3

The core (2003)

Mister 880 (on yt)

Superbad

TV:

Samurai jack (so relaxing without sound!)

The office (for daytime)

Boondocks

Ugly Betty

Gilmore girls

Avatar (2005)

Shōgun (intense but love the setting post ep 1)

Adventure time

Books:

Kafka on the shore (murakami. Great, long calm almost throughout. Feels slow and peaceful)

The rat trilogy (murakami, three mostly independent books, most riveting is the last. A little sexist)

King Albert (Francis bebey)

My life as an Indian (Schultz)

Edit:Games!

Spyro, original PS1 or remasters

Jak and daxter (1)

DM for how to find these by the way if you like

Has anyone had low dose naltrexone prescribed by a GP, or an nhs fatigue clinic? I know it can be obtained privately of course.

Im 27f and I've had severe ME for four years. I'm pretty limited in what I can tolerate for entertainment (no TV 😔) but luckily I've always loved books so I'm able to get a lot of joy out of listening to my audiobooks.

But, it would be more enjoyable if I had some online friends to discuss the books with!

I tried looking for online book groups, but the ones I found used monthly voice/video chats to discuss their books, like a regular book-club meeting but online, and unfortunately that format wouldn't work well for me. A text exchange over a longer period would be much more handleable.

I thought I'd ask in case anyone else is in a similar position with what they can tolerate and would be interested in becoming reading buddies, or like, the lowest key, chillest online book club to ever exist.

I usually read literary fiction, historical fiction, and I also love narrative nonfiction and horror. But honestly I am super flexible when it comes to genre; I'm open to almost anything haha.

Edit: also I recently read Sunrise on the Reaping, which I know was very popular, so if anyone is interested in discussing that book in particular lmk :)

I've had MECFS for 7+ years, post tick-bite. Usually I use a wheelchair at home and walk about 5 steps to bathroom. I drive once a month for appointments.

I recently had to walk 150m as I couldn't get a near enough park to my osteopath. I didn't get PEM from this walk.

3 days ago, my ptnr & I were staying at an apartment when a fire alarm went off ordering everyone to evacuate. I walked down 4 flights of stairs. I expected PEM yday, maybe today, but all I feel is stiffness in my calves (like the good ol' days of exercise).

I have recently done 8 weeks of 7mg nicotine patches. Plus, a kinesiologist (clutching at straws here) prescribed Houttuynia and I found it in Myc-P (herbal) for possible Lyme/Bartonella (I live in Australia where Lyme hasn't been proven). When I first got sick I did an array of Buhner herbs + cistus tea + doxycycline + enzymes - I herxed like hell back then, but now I can drink cistus no probs, and I don't seem to be herxing. But am I possibly getting better????? When do you know???? I've walked more today around the house than in 7 years, I'm so interested (shush now excitement!) to know if the next few days will tell....

if you could have ANY tests done what would they be?

whether for current or future clinical relevance (ie maybe it doesnt impact treatment now but could be promising in the future) OR for the sake of proving disability (like the invasive CPET)

Apparently (see r/nootropics for example) it is super effective against fatigue, while also having a strong impact on motivation or concentration.

But I’m afraid it will give me “false energy” like coffee and that it will damage my health.

What do you think?? I haven't found anything on the sub yet

Hi,

I’ve been on a biologic for almost a year for my AS (ankylosing spondylitis), and I’ve mostly been in remission. Three weeks ago I decided to try a TCM supplement (US company, third-party tested) but mainly for ulcerative colitis related symptoms, as well as acne and some food sensitivities. I was cautious with the dose, starting with 1 capsule every other day for 1 week, took a break for a few days, and then took 1 capsule/day for another week. I took 15 capsules in total. The normal dose is 2 capsules or more, 2-3 times/day. After two weeks I started to feel some pain/fatigue in my hands, legs and the middle of my back and some discomfort in my gut. At some point I also felt burning on my left hand (thumb and index finger) but only for a short amount of time. I’ve been having these symptoms for a week now with no improvements. It’s not a sharp/stabbing pain but I can feel it all the time. Does anyone know what this could mean?

Before starting the supplement, I asked the TCM practitioners behind this supplement if it interacts with the meds I’m taking and they said they had given it to other patients with the same meds without any issues.

Of course, I started searching on the internet what these symptoms could mean (I know I shouldn’t do this) and I saw some similarities with CFS and other conditions, and now I’m scared I have messed something up.

I have contacted my rheumatologist but they told me to wait another 1-2 weeks to see if my symptoms will improve. It just feels weird to still have these symptoms after 1 week.

Another thing is that around the time I was taking the supplement, my sibling was sick with a cold and I might have also catched a cold but I haven’t had a runny/stuffed nose which I usually always have. I have felt some throat pain.

Im at such a loss right now. Im 23 and close to being homeless AGAIN due to my folks not understanding that ME/CFS isn't laziness but a legitimate illness that I struggle with everyday.

They dont care to learn, ask, or help. I got mono a couple years ago and it led to this. Im mild/moderate rn but am constantly pushing myself due to my family and its more draining than anything ive ever experienced. Its becoming a cycle of crashing and I'm so exhausted in every way possible and it doesn't help that I've always struggled with mental illness as well and it's just too much.

Being yelled at to get out of bed, get a job, be productive, being told Im doing nothing with my life and I just CANT. Dealing with the paranoia of knowing I'm not wanted here but not being able to do anything about my living situation atm hearing them talk and laugh about how closed off and lazy I am. It's exhausting.

I lost my job a couple months ago due to a bad crash and not being able to handle it anymore and have been leaving the house to look like I was working in order to keep a roof over my head. Constantly having to leave would cause PEM but I had to keep a roof over my head. I told them I lost my job and Im not able to work rn and this is the outcome. Homelessness again.

I was homeless/living in a garage when i got mono because they also thought that I was "being lazy" and that I shouldve been recovered by the 2nd week. This illness has taken so much from me these past couple years and I'm so tired of being tired in every way possible.

Hey guys! I’m a physical therapist and I have a young patient who I believe has CFS. They were sent to me because their PCP didn’t know what else to do. All reported symptoms line up with what the CDC outlines for a diagnosis. Blood test and thyroid tests were good.

Down side is I can’t give an official diagnosis, however I want to support them as best I can. Are there any additional tests I should push for them to get, what things have helped you guys from a PT standpoint, resources for activity pacing?

Thank you!

EDIT: I want to say thank you again for everyone that has given information, links, personal experiences, literally anything 💕

Whenever I have a stressful day, I am super done in the evening. Then I sleep an feel a bit better the next day (light flu like feeling, light body ache, maybe runny nose). Then the next day I feel even better and might even be almost symptom free. On day 3 I feel like a bus hits me and I have pain all over my body, throat ache, headache, feverish feelings and flu like feeling)

Fyi, I have a history of depression and am taking meds for that

Thank you!

I had shoulder surgery 12/30/24. I have started PT. I am struggling with crashes. I have PT 3 times a week. I made it one time last week. I believe this is causing me so many issues. I had PT last Monday and today I feel back to my baseline. I went to the ER yesterday with chest pains and everything was fine. This is a work related injury. I haven’t worked in 4 years. I felt like fire was going through my body from my head to my feet. I don’t want to keep doing this to myself. Anyone have any suggestions?

Over the last year or so, with my level of illness going from mild-moderate to moderate-severe, I've noticed a recurring symptom that I don't know how to place.

It's like a headache that doesn't quite behave like a headache. I'm no stranger to headaches- I've been dealing with the cervicogenic variety for years- but this one consistently confuses me. It seems to be a feature of my PEM, particularly if brought about by mental/cognitive/emotional exertion. When it comes on, it seems constant and unchanging; it's a dull, heavy sort of feeling in my skull that doesn't throb or change with movement, and doesn't respond to painkillers. I'm not even sure if I'd call it "pain", just a very uncomfortable sort of pressure, as if my brain were straining against my skull.

It's really, really tiring. It exacerbates my brain fog and makes it exhausting to think and even hold my head up, but somehow it's not quite pain. Has anyone else experienced anything similar? Any tips for dealing with it?

I read here that you can use GPT chat for analysis. How do you do it? I've been keeping a text-only diary for several mouns now. It's mostly vitamins, simptoms and my productivity. I want to add some data from my watch. Should I just ask him to analyze it and come to some conclusions?

Hi, I'm a 45 y/o Hispanic woman with CFS/Fibromyalgia seeking a friend for occasional activities & socializing. I'm kind of nervous about doing this, so please respond only if you have good intentions. I don't smoke and drink only occasionally. My interests are scary movies, the Fallout 4 Fandom, taking my dog on walks, nature trails, urban gardening, grunge/punk and alternative music, meditation, cooking, theater, vintage/antiquing, and writing. And on rare occasions, night life. Any gender, race, nationality, orientation is ok, as this would be completely platonic. I'm pretty left leaning in my views so I prefer someone like minded.

What do you mean I’m fighting for my life after a shower? What do you mean I’m out of breath, my legs hurt and I need a nap after walking down the stairs? What do you mean concentrating on something is virtually impossible? M.E is so weird.