Honestly i called to see if they had record of any ME/CFS specialists (they did not and suggested rheumatology), but i briefly mentioned my regular chest pains with overexertion.

She asked if i wanted her to do a medical check on me and i decoded sure, why not?

Three minutes later: "My recommendation is that you go to the hospital within the hour as it is likely your symptoms will get worse" 😂

Girl you know whats gonna make my symptoms worse? Going to the hospital 😆

Thank you for the laugh but I will continue lying on my couch with my heating pad waiting for my heart rate to slow down 😘 ❤️

Been dealing with episodes of severe crippling fatigue, joint pain, body aches like flu since I was in my early 20s. But since they messed with my ssris in 2014 it got worse and now it’s CRIPPLING. I’ve had ever test under sun and only things abnormal are I have severe endometriosis, infertility and high bilirubin, Sibo snd POTS. Do they seriously not know what causes cfs yet???

Hi Folks ! What are your personal opinions on the Myers cocktail there is an option given by my N.D. To try the Myers cocktail 3-4 weeks in a row first and then once a month or two on maintenance.

Really odd only in my arms, when I get up and walk around it’s not as obvious. It waxes and wanes I could go weeks without having it, I’m learning this might be a PEM symptom.

What are your regular measurements like? Mine are variable, as I expected, depending on activity but my CV (coefficient of variation) is consistently low no matter how good the other values.

This is something that i wonder for a couple years. Anytime when I test my b vitamins i have low normal b Vitamins (i have to Take them Sometimes) and very high nicotinamide. But i dont supplementing B3 and i eat most of the time vegan.

i know dissociation probably isnt good but i think i have to. For me, i dont know any other way to dull my strong emotions that keep me in the crash cycle. I want to work on my dissociation but i feel like it benefits my ME/CFS at times. What about you all?

Hello there I’m a 22 year old male who got covid at 19 I had a successful career and was into bodybuilding and life was great till I developed severe Me/ cfs as a consequence from a Covid infection . These past years I’ve been declining even more while my family been verbally abusing me and also refusing to help me for anything . I’ve been abandoned by friends , doctors , family , everyone . It’s hard living with this crippling illness but even harder dealing with an abusive family and practically losing everything while having 0 support .

I was wondering if there’s any cheaper alternatives to euthanasia asides from the Switzerland ones because at the moment I don’t have the balls to do it myself I need assisted euthanasia. I don’t have the balls to cut my veins so I need help for that so was wondering if there’s cheaper options in Europe . Thank you

Im trying not to be paranoid since they’re pretty constant but its still really painful, Is there anything that i need to watch out for?

Im on 4.5 but PEM is so much worse and my doctor suggests to stop without taper. I have no idea if i should trust that or what to expect

Ive had CFS since i was 12 (Caused by viral encephalits), now 20 y/o. I missed about 50%ish of each school year from y8-11 (UK school years) and am currently just kinda existing when i have the energy to do so, wondering if anyone else is in/has had a similar experience since i have legitmately only met one other person with CFS ever

I’ve been in a crash since October and I just can’t attend but I feel so guilty and stressed about missing it… how do I cope with this 😓

What do you do when you’ve tried all coping mechanisms but are still clinically depressed because of this bedbound life? I realize I relied heavily on my ex-partner. I cant do this please no medication suggestions; have mcas; cant take them or tolerate them

Spotify Wrapped dropped today. Share your numbers!

Has any of you gotten a muscle biopsy to analyze the electron transport chain?

My prescriber has suggested this to me, (I won’t get it for now because I live out-of-country.

If so, what treatments have been tailored for you based on the biopsy?

Thank you.

Can someone please help me with a short ”explanation” for what is essentially what is happening in our bodys when we have ME/CFS? Like something more that ”I am tired” and easier to understand than to go into mast cells and all that. This is for friends and family to explain a bit more what is happening. All your explanations are more than welcome!

I got a Garmin watch and was wondering how y'all set it up to help with pacing? I turned on an alert for a heart rate above 110 but can I do anything other than that? I'm not even sure if it alerts immediately or only if it's a resting heart rate of 110. Any advice on how to set it up for pacing is appreciated!

I understand this is a long post and it's okay if I don't get replies. I'm making it to get some insight and advice on how to feel human again. I am a walking corpse it feels like. Any advice will be appreciated.

I'm early 30s 5'11" 173lbs M, and for about 6 years now I have felt unwell everyday, some days worse than others. In 2018, 2 months after quitting Lexapro which I was on for 8 years, I randomly became inflicted with intense symptoms. Body tremors, insomnia, intense anxiety, panic attacks, low appetite, severe depression, FATIGUE, headaches, malaise. It was hell for several weeks.

I didn't know what was happening, blood tests were normal as well. The symptoms lessoned but I was left damaged ever since.

Current symptoms are daily fatigue, malaise, waking up at night randomly, trouble falling back asleep, dull headaches, depression, anxiety, feel sorta off balance and heavy when walking, dark bags under eyes. I look sick. I lost my life. I haven't felt joy, happiness, contentment in many years. I am late for work often.

I rescued a dog early 2023 and a few months ago I gave them back to the rescue due to how bad I feel and I want better for the dog. It was so difficult to give them up.

My daily life is essentially wake up, drive car to work, sit in cubicle all day, drive home, chores, eat, endlessly browse internet on couch (which I've been doing all day at work), then sleep. I lost all friends. I see parents And siblings a few times a week at least.

Nov 2023 labs https://imgur.com/a/Ta07uvO

2021 at home watchpat one sleep study https://imgur.com/a/wpm5Oze

2021 blood tests https://imgur.com/a/XR9ws6a

I'm wondering if anyone on here has tried this, how you implemented it and if you've felt like it was helpful.

If you're wondering what I'm talking about check out this and this, two great posts explaining the research and approach.

Shout out to u/Relative-Regular766 for their lovely recaps and bringing the information to this sub.

I got sick about a month ago. Got better and now am sick again :( I’ve been doing my best to stay healthy. Fortunately the first sickness didn’t hurt my baseline. I’m just nervous and I go to college.

i started fluvoxamine in late july, and slowly increased to 200 mg over the course of 4 months. i also added atenolol in mid-late september at 25 mg, and later 50 mg (2 doses split in the day) in late november. both of these medications have allowed me to stand up right for longer and walk more without experiencing severe PEM. i notice i don’t need to rely on acetaminophen as often, and PEM is noticeably shortened/less severe. i’m also able to talk on the phone more. the fluvoxamine has also helped with my SI that comes on during PEM.

that being said, im not fully recovered. besides going on occasional outings and errands (once or twice a week, usually not more than an hour) i don’t have energy for anything more. i still cant exercise, and still usually experience PEM after going out. but these medications have helped life feel a bit less shitty.

Hey, I have long Covid and very severe M Me/Cfs. In the middle of the night, I wake up to pain in my ear to the point where it hurts to even rest it on the pillow. This is also accompanied by vertigo when moving my head from side to side, I would assume BPPV like vertigo and nausea. As well as a fullness clogged feeling. Has anyone else had this? I had my ear looked at about a month ago with an oyhoscope and said there was no infection so I’m suspecting it’s some sort of inner ear issue. It seemed to have resolved the first time, but it’s back now I wonder if this could be related to PEM or if it’s something like the vestibular neuritis. Thanks

I feel like I'm highlighting fundraisers every week which says a lot about what we have to do to get anything done. I'm not affiliated with any charity and I was thinking instead of asking this subreddit to donate, it would be more appropriate if we could ask our loved ones for a donation as Christmas gift (if you have people supporting you and if they have the means to donate).

I've been following ME Research UK for a few months and they are very active (and scandal free unlike other ME charities). On top of funding biomedical research (eg this famous one https://www.nature.com/articles/s41467-023-44432-3), they have a bi-annual magazine and reach out to politicians to highlight ME/CFS. They have also funded further research into the nanoneedle which showed promising results for diagnostic tests in 2019. The new study will conclude next year.

Donations will be doubled from 3rd to 10th December:

"Thanks to our wonderful Pledgers, and by attracting a Charity Champion, donations to ME Research UK during the Big Give’s Christmas Challenge could be DOUBLED during next month’s event. To unlock all match funding £28,200 must be donated through The Big Give portal from 3rd to 10th December 2024."

https://donate.biggive.org/campaign/a056900002TPSsrAAH

I have ADHD, OCD, anxiety, and can get quite emotional, but I wouldn't say I've had severe depression as I've never been suicidal (I'm too scared of death for that - I actually love life and want to experience so many things and live so many lives...).

I've tried ADHD stimulant meds - they just over exert my body and make me feel weird.

I was on Prozac (Fluoxetine) 20mg for the last 6 months and at first it was great for my anxiety and OCD and gave me more energy, getting out of bed was easy for the first time in years. However I noticed I was getting into PEM more often, almost every day. And I don't think it was just me physically doing more because of my mood, even days where I rested I felt worse, so I think it was doing something physiologically too.

I'm now tapering very slowly off the Prozac down to a lower dose and omg I'm already noticing myself becoming more irritable, the OCD thoughts getting worse again. I hate this 😭 I don't want to try any other SSRIs/SNRIs at this point. I liked Prozac because of the long half-life and it being weight neutral.

The only other med I'd consider trying is Wellbutrin but you can't get it here in the UK.

Just sitting here trying to WFH and find motivation to do my tasks but I just don't give a fuck and want to cry.

Just needed to vent really. Why is my body so cruel to me?!

Otherwise it's like I am in a constant state of PEM and ANS hyperactivity. My ME doctor says this is dangerous and that I should stop taking it every day but i don't want to be 100% bedridden. Is there any alternative to calm the ANS? Do you think taking 2mg of lorazepam daily is dangerous?