r/cfs Nov 10 '24

Official Stuff MOD POST: New members read these FAQs before posting! Here’s stuff I wish I’d known when I first got sick/before I was diagnosed:

312 Upvotes

Hi guys! I’m one of the mods here and would like to welcome you to our sub! I know our sub has gotten tons of new members so I just wanted to go over some basics! It’s a long post so feel free to search terms you’re looking for in it. The search feature on the subreddit is also an incredible tool as 90% of questions we get are FAQs. If you see someone post one, point them here instead of answering.

Our users are severely limited in cognitive energy, so we don’t want people in the community to have to spend precious energy answering basic FAQs day in and day out.

MEpedia is also a great resource for anything and everything ME/CFS. As is the Bateman Horne Center website. Bateman Horne has tons of different resources from a crash survival guide to stuff to give your family to help them understand.

Here’s some basics:

Diagnostic criteria:

Institute of Medicine Diagnostic Criteria on the CDC Website

This gets asked a lot, but your symptoms do not have to be constant to qualify. Having each qualifying symptom some of the time is enough to meet the diagnostic criteria. PEM is only present in ME/CFS and sometimes in TBIs (traumatic brain injuries). It is not found in similar illnesses like POTS or in mental illnesses like depression.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), ME, and CFS are all used interchangeably as the name of this disease. ME/CFS is most common but different countries use one more than another. Most patients pre-covid preferred to ME primarily or exclusively. Random other past names sometimes used: SEID, atypical poliomyelitis.

How Did I Get Sick?

-The most common triggers are viral infections though it can be triggered by a number of things (not exhaustive): bacterial infections, physical trauma, prolonged stress, viral infections like mono/EBV/glandular fever/COVID-19/any type of influenza or cold, sleep deprivation, mold. It’s often also a combination of these things. No one knows the cause of this disease but many of us can pinpoint our trigger. Prior to Covid, mono was the most common trigger.

-Some people have no idea their trigger or have a gradual onset, both are still ME/CFS if they meet diagnostic criteria. ME is often referred to as a post-viral condition and usually is but it’s not the only way. MEpedia lists the various methods of onset of ME/CFS. One leading theory is that there seems to be both a genetic component of some sort where the switch it flipped by an immune trigger (like an infection).

-Covid-19 infections can trigger ME/CFS. A systematic review found that 51% of Long Covid patients have developed ME/CFS. If you are experiencing Post Exertional Malaise following a Covid-19 infection and suspect you might have developed ME/CFS, please read about pacing and begin implementing it immediately.

Pacing:

-Pacing is the way that we conserve energy to not push past our limit, or “energy envelope.” There is a great guide in the FAQ in the sub wiki. Please use it and read through it before asking questions about pacing!

-Additionally, there’s very specific instructions in the Stanford PEM Avoidance Toolkit.

-Some people find heart rate variability (HRV) monitoring helpful. Others find anaerobic threshold monitoring (ATM) helpful by wearing a HR monitor. Instructions are in the wiki.

-Severity Scale

Symptom Management:

-Do NOT push through PEM. PEM/PENE/PESE (Post Exertional Malaise/ Post Exertional Neuroimmune Exhaustion/Post Exertional Symptom Exacerbation, all the same thing by different names) is what happens when people with ME/CFS go beyond our energy envelopes. It can range in severity from minor pain and fatigue and flu symptoms to complete paralysis and inability to speak.

-PEM depends on your severity and can be triggered by anythjng including physical, mental, and emotional exertion. It can come from trying a new medicine or supplement, or something like a viral or bacterial infection. It can come from too little sleep or a calorie deficit.

-Physical exertion is easy, exercise is the main culprit but it can be as small as walking from the bedroom to bathroom. Mental exertion would include if your work is mentally taxing, you’re in school, reading a book, watching tv you haven’t seen before, or dealing with administrative stuff. Emotional exertion can be as small as having a short conversation, watching a tv show with stressful situations. It can also be big like grief, a fight with a partner, or emotionally supporting a friend through a tough time.

-Here is an excellent resource from Stanford University and The Solve ME/CFS Initiative. It’s a toolkit for PEM avoidance. It has a workbook style to help you identify your triggers and keep your PEM under control. Also great to show doctors if you need to track symptoms.

-Lingo: “PEM” is an increase in symptoms disproportionate to how much you exerted (physical, mental, emotional). It’s just used singular. “PEMs” is not a thing. A “PEM crash” isn’t the proper way to use it either.

-A prolonged period of PEM is considered a “crash” according to Bateman Horne, but colloquially the terms are interchangeable.

Avoid PEM at absolutely all costs. If you push through PEM, you risk making your condition permanently worse, potentially putting yourself in a very severe and degenerative state. Think bedbound, in the dark, unable to care for yourself, unable to tolerate sound or stimulation. It can happen very quickly or over time if you aren’t careful. It still can happen to careful people, but most stories you hear that became that way are from pushing. This disease is extremely serious and needs to be taken as such, trying to push through when you don’t have the energy is short sighted.

-Bateman Horne ME/CFS Crash Survival Guide

Work/School:

-This disease will likely involve not being able to work or go to school anymore unfortunately for most of us. It’s a devastating loss and needs to be grieved, you aren’t alone.

-If you live in the US, you are entitled to reasonable accommodations under the ADA for work, school (including university housing), medical appointments, and housing. ME/CFS is a serious disability. Use any and every accommodation that would make your life easier. Build rest into your schedule to prevent worsening, don’t try to white knuckle it. Work and School Accommodations

Info for Family/Friends/Loved Ones:

-Watch Unrest with your family/partner/whoever is important to you. It’s a critically acclaimed documentary available on Netflix or on the PBS website for free and it’s one of our best sources of information. Note: the content may be triggering in the film to more severe people with ME.

-Jen Brea who made Unrest also did a TED Talk about POTS and ME.

-Bateman Horne Center Website

-Fact Sheet from ME Action

Long Covid Specific Family and Friends Resources Long Covid is a post-viral condition comprising over 200 unique symptoms that can follow a Covid-19 infection. Long Covid encompasses multiple adverse outcomes, with common new-onset conditions including cardiovascular, thrombotic and cerebrovascular disease, Type 2 Diabetes, ME/CFS, and Dysautonomia, especially Postural Orthostatic Tachycardia Syndrome (POTS). You can find a more in depth overview in the article Long Covid: major findings, mechanisms, and recommendations.

Pediatric ME and Long Covid

ME Action has resources for Pediatric Long Covid

Treatments:

-Start out by looking at the diagnostic criteria, as well as have your doctor follow this to at least rule out common and easy to test for stuff US ME/CFS Clinician Coalition Recommendations for ME/CFS Testing and Treatment

-TREATMENT RECOMMENDATIONS

-There are currently no FDA approved treatments for ME, but many drugs are used for symptom management. There is no cure and anyone touting one is likely trying to scam you.

Absolutely do not under any circumstance do Graded Exercise Therapy (GET) or anything similar to it that promotes increased movement when you’re already fatigued. It’s not effective and it’s extremely dangerous for people with ME. Most people get much worse from it, often permanently. It’s quite actually torture. It’s directly against “do no harm”

-ALL of the “brain rewiring/retraining programs” are all harmful, ineffective, and are peddled by charlatans. Gupta, Lightning Process (sometimes referred to as Lightning Program), ANS brain retraining, Recovery Norway, the Chrysalis Effect, The Switch, and DNRS (dynamic neural retraining systems), Primal Trust, CFS School. They also have cultish parts to them. Do not do them. They’re purposely advertised to vulnerable sick people. At best it does nothing and you’ve lost money, at worst it can be really damaging to your health as these rely on you believing your symptoms are imagined. The gaslighting is traumatic for many people and the increased movement in some programs can cause people to deteriorate. The chronically ill people who review them (especially on youtube) in a positive light are often paid to talk about it and paid to recruit people to prey on vulnerable people without other options for income. Many are MLM/pyramid schemes. We do not allow discussion or endorsements of these on the subreddit.

Physical Therapy/Physio/PT/Rehabilitation

-Physical therapy is NOT a treatment for ME/CFS. If you need it for another reason, there are resources below. It can easily make you worse, and should be approached with extreme caution only with someone who knows what they’re doing with people with ME

-Long Covid Physio has excellent resources for Long Covid patients on managing symptoms, pacing and PEM, dysautonomia, breathing difficulties, taste and smell disruption, physical rehabilitation, and tips for returning to work.

-Physios for ME is a great organization to show to your PT if you need to be in it for something else

Some Important Notes:

-This is not a mental health condition. People with ME/CFS are not any more likely to have had mental health issues before their onset. This a very serious neuroimmune disease akin to late stage, untreated AIDS or untreated and MS. However, in our circumstances it’s very common to develop mental health issues for any chronic disease. Addressing them with a psychologist (therapy just to help you in your journey, NOT a cure) and psychiatrist (medication) can be extremely helpful if you’re experiencing symptoms.

-We have the worst quality of life of any chronic disease

-However, SSRIs and SNRIs don’t do anything for ME/CFS. They can also have bad withdrawals and side effects so always be informed of what you’re taking. ME has a very high suicide rate so it’s important to take care of your mental health proactively and use medication if you need it, but these drugs do not treat ME.

-We currently do not have any FDA approved treatments or cures. Anyone claiming to have a cure currently is lying. However, many medications can make a difference in your overall quality of life and symptoms. Especially treating comorbidities. Check out the Bateman Horne Center website for more info.

-Most of us (95%) cannot and likely will not ever return to levels of pre-ME/CFS health. It’s a big thing to come to terms with but once you do it will make a huge change in your mental health. MEpedia has more data and information on the Prognosis for ME/CFS, sourced from A Systematic Review of ME/CFS Recovery Rates.

-Many patients choose to only see doctors recommended by other ME/CFS patients to avoid wasting time/money on unsupportive doctors.

-ME Action has regional facebook groups, and they tend to have doctor lists about doctors in your area. Chances are though unless you live in CA, Salt Lake City, or NYC, you do not have an actual ME specialist near you. Most you have to fly to for them to prescribe anything, However, long covid has many more clinic options in the US.

-The biggest clinics are: Bateman Horne Center in Salt Lake City; Center for Complex Diseases in Mountain View, CA; Stanford CFS Clinic, Dr, Nancy Klimas in Florida, Dr. Susan Levine in NYC.

-As of 2017, ME/CFS is no longer strictly considered a diagnosis of exclusion. However, you and your doctor really need to do due diligence to make sure you don’t have something more treatable. THINGS TO HAVE YOUR DOCTOR RULE OUT.

Period/Menstrual Cycle Facts:

-Extremely common to have worse symptoms during your period or during PMS

-Some women and others assigned female at birth (AFAB) people find different parts of their cycle they feel their ME symptoms are different or fluctuate significantly. Many are on hormonal birth control to help.

-Endometriosis is often a comorbid condition in ME/CFS and studies show Polycystic Ovary Syndrome (PCOS) was found more often in patients with ME/CFS.

Travel Tips

-Sunglasses, sleep mask, quality mask to prevent covid, electrolytes, ear plugs and ear defenders.

-ALWAYS get the wheelchair service at the airport even if you think you don’t need it. it’s there for you to use.

Other Random Resources:

CDC stuff to give to your doctor

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

NY State ME impact

a research summary from ME Action

ME/CFS Guide for doctors

Scientific Journal Article called “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome”

Help applying for Social Security

More evidence to show your doctor “Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

Some more sites to look through are: Open Medicine Foundation, Bateman Horne Center, ME Action, Dysautonomia International, and Solve ME/CFS Initiative. MEpedia is good as well. All great organizations with helpful resources as well.


r/cfs 3d ago

Wednesday Wins (What cheered you up this week?)

15 Upvotes

Welcome! This weekly post is a place for you to share any wins or moments that made you smile recently - no matter how big or how small.

Did you accomplish something this week? Use some serious willpower to practice pacing? Watch a funny movie? Do something new while staying within your limits? Tell us about it here!

(Thanks to u/fuck_fatigue_forever for the catchy title)


r/cfs 4h ago

Vent/Rant Doctor told me CFS doesn't exist

110 Upvotes

Just a rant here: A doctor the other day told me there's no such thing as chronic fatigue and then sent me a link to a Mayo Clinic article about idiopathic hypersomnia, which as far as I can tell is simply another name for chronic fatigue; it is unrelenting fatigue with no known cause and no known treatments. So he believes in idiopathic hypersomnia and not chronic fatigue. CFS simply doesn't have a chance of medical advancements if medical professionals don't take it seriously. At least that's how I'm feeling in this moment.


r/cfs 7h ago

The moment you realise someone doesn't understand

69 Upvotes

Some examples:

In response to me saying I need to pace my energy: 'You don't want to help yourself'

'In response to me saying I had a headache: 'They can be caused by stress, but I don't think you are stressed.' (laughing) Me: 'Why?' Them: 'Because you're in the bed all the time.' And later when I said you can be stressed in the bed, they smirking said 'like what?' (I have been very stressed by not being sure I'll have energy to do stuff, by isolation, lack of change of scene)

And in response to me needing help with other stuff: 'You seem like you can do this', 'You seem loaded up with energy, so that was why I was surprised you said you couldn't' (after saying other stuff that showed a strong lack of understanding). 'You don't seem like you need help with that.'

Or when I do something and say I can't do it every day. 'But you did it today!'

Or when I say I'm struggling mentally being in bed all the time 'You can just walk to the living room.' And then I say I cant walk to the living room. 'You can just walk and hold onto the walls, here and here, and here'. And I say it's not about that, but they don't understand.

So so many more. It's heartbreaking. The worst part is, I feel the need to explain my condition, but it doesn't help, they just have more questions and more misunderstandings, or just comebacks to me. But if I don't explain they also don't understand.

Do you have this? Isn't it disturbing when someone you think understands you suddenly thinks you're a lot better than you are or have an easy life, or that your attitude is the problem?


r/cfs 48m ago

I think we should all be allotted PTO days from this disease

Upvotes

Like you get 2 weeks off from having ME/CFS per year. You can do whatever you want on those days and whatever you do won’t cause PEM or worsening of your baseline. risk free days. Oh and the longer you’ve had the disease, the more pto you accrue per year 😁

what would you do??


r/cfs 15h ago

Do you ever just say "fuck it" and do more?

156 Upvotes

I want to leave the house and do some shopping, just to feel normal for a moment. I know I'll only last 5-10 minutes, and the following day(s) will be awful, but I just have this urge to get out.

Do you guys experience this? Do you give into the urge, or are you able to stomp it down somehow? I'm so close to just saying fuck it and going, despite the consequences being awful


r/cfs 2h ago

Advice Why do we crash after bathing? Is it the heat?

12 Upvotes

Thanks for the replies but here is how I "bathe" I sit in the bathtub, use the handheld shower and leave the bathroom door half open so it doesn't get too warm and steamy. Wash my hair first so the rest of my body stays chilled.

Turn the water on and off again many times so I cool down between shampooings.

But after I get out and wear my Apple watch again my heartrate is still around 100 which means it probably was high in the bathroom too


r/cfs 12h ago

Do you have hope for treatments in 5/10 years?

71 Upvotes

Just this. I need to know if there is something worth looking for and some hope to hold on to. Ill’be 33 in 10 years so even if i have to endure hell for my 20’s if there is something worth looking up to i think i can do it. I know many will tell me to focus on the now and accept my condition but at the moment i just want to hear something that might give me some hopes :,)


r/cfs 3h ago

Vent/Rant It’s beautiful today in the PNW and I’m crying in a dark room

11 Upvotes

I’ll start by saying I’m mild, so this will likely come across as me being a whiny b!tch to those of you who are severe. This turned into more of a vent and diary entry.

I recently got my POTs under better control with extended release propranolol and did less than an hour of weeding 2 days ago. My HR spiked too high for too long, Visible warning me, so I stopped, rested legs up and went back to it but could tell it was too much still so I stopped. Then yesterday we went car shopping (before they’re double in price) and I could feel my legs and arms getting heavy on my way home.

The evening just took me worse into fatigue, deep horrible aching all over, flu feeling, sound sensitivity, headache and weakness beyond repair. Do you ever hope that “Oh, I’ll just get a really good night sleep tonight and I’ll feel OK tomorrow.” That’s what fixes problems for most everything else. Hydration and rest, better in the morning.

Not for us with ME.

I had plans to go to the protest today. I want to do my part to fight back, for my family, my trans kid, my teen daughter, myself and my communities. I feel so guilty that I’m laying here doing fck all while everyone is out there causing good trouble.

I wanted to plant the rose bushes, and help my husband build garden beds in the 70F weather. Get some sunshine on my body, feel the breeze, touch the dirt, hear everyone mowing their lawns and the kids playing outside. Help my son clean out his new-to-him car. So proud of the man he has become.

ME won’t allow it.

But here I lay. Crying alone In my dark cool bedroom, avoiding sunlight and sounds because it hurts. Not eating because my body won’t digest it well. Drinking so much water but regretting it when I have to shuffle and creak to the bathroom every 30 mins. Trying to find a comfortable position so my limbs will stop aching. But never finding it.

ME is cruel.

Why has my body betrayed me so? How long will it punish me for again? When will I get to enjoy my family and my environment again? Will I ever actually recover?

ME will never let you know.

I’m mild, for now, so I’ll recover back to a baseline that may or may not be worse than before. But definitely worse than when I was healthy. Then every day I’ll have to continually pull myself back from doing too much, but never knowing what too much actually is for me. Forever in fear of that horrible feeling that washes over your whole body, knowing that something you did in the last 48 hours was “too much”.

ME is too much.

If you got this far. Thanks for reading. I think I needed to write it out. Thinking of you all 💕

TLDR: Feeling down today so wrote a blog post about a mild person (me) succumbing to PEM from gardening and missing all of the things that they love and planned to do this weekend while there is one day of beautiful weather outside.


r/cfs 5h ago

Symptoms Is it normal for a blood draw to make symptoms much worse?

14 Upvotes

I just had a blood draw 2 days ago, and I am completely blasted. I slept more than normal, and I am unable to concentrate or think much at the moment. I feel no interest in doing anything heavy, or even thinking, I just want to rest.


r/cfs 5h ago

Another quick rant

11 Upvotes

Today me and my mom had a conversation and I tried to explain to her what I was dealing with when it came to CFS and for the first time ever it seemed like she tried to understand a bit. Yes there were also comments like "how can u do this but not this" and "You're not helping yourself" but at one point she came back into my room and tried to compromise and I felt awful because some things just CANT be compromised when you have CFS.

For example "Okay I get ur unable to work full time anymore so how about part time?" or "i get that ur senses are all messed up but laying in the dark will only worsen ur depression how about going downstairs and read like u used to?" It hurts because I can see she's trying to give a little but I just CANT.

It's not that I'm trying to be difficult, its that ME/CFS is such a complex condition to manage and making sure I don't push myself is a priority for me and there's things I just CANT do in order to make sure I don't end up severe like so many people unfortunately have.

I refuse to push myself past my limits.


r/cfs 6h ago

Advice Want to help my brother but out of my depth. Need advice

13 Upvotes

Hey folks. I need some advice to help my brother get the care he needs. The root of the issue is that my brother has been admitted to the psych ward to diagnose and treat his health problem, but he is adamant that he is dealing with ME/CFS, while all the specialists we have talked to say the evidence points to a psychosomatic issue. TLDR at the bottom.

The backstory: several weeks ago, Jude (let's call him that) fell into a downward spiral. He is 20 and lives alone, working part time. He started sounding pessimistic and having poor mood, and it escalated to having little energy and not leaving the bed except for bare essentials. Important to note is that he claims he has little to no sleep each night and has frequent pain. When we realized the situation was out of control, we went to see him (about 2 weeks ago). The first few days were ok, and he had some energy to sit up and eat with us, talk with us, but eventually always had to lie down again. He also told us about his sleep problems and that ChatGPT had pointed him towards the ME/CFS diagnosis.

The next days we started doing tests and talking to doctors, but Jude had less and less energy each day. He started talking slowly and rarely, being annoyed by sounds and lights, and eventually spent whole days lying in bed but "not sleeping". This is obviously a scary situation and we wanted to get him admitted to a hospital, but the low standards of healthcare in my country as well as some other factors made this incredibly difficult. So for example, we called the ambulance a few times (when Jude said he was having an attack) and he was admitted, given glucose and mild sedatives, and told he should go back home. So the best we could do was keep investigating and try to convince doctors that his life was in danger (they were convinced otherwise). All the tests (blood, hormones, MRI, puncture) came back fine. Eventually, we were able to get him admitted to the best neurological clinic we have in my city, in the psychiatric ward. Doctors haven't given a diagnosis yet, but they seem to think this is a mental health issue (possibly depression).

So I have 2 different viewpoints - my brother's and the doctors' and don't know how to get to the bottom of it. I looked at the symptom list for ME/CFS, and he meets nearly all criteria (not sure about the lymph nodes), but the same symptoms seem to apply to severe depression. How can I help doctors consider ME/CFS and rule out depression or CFS?

TLDR: Brother is newly admitted for treatment, but not yet diagnosed. How can I help doctors reach the right diagnosis between ME/CFS and severe depression? For context, hardly any doctors know about ME/CFS in my country.


r/cfs 42m ago

Advice Benzo’s: In your experience, how often is too often?

Upvotes

How frequently can you take benzos without developing reliance and addiction?

I currently limit myself to one lot of 2mg of Lorazepam a week when I’ve overdone it or need sleep. Trying to establish if I’m having withdrawal symptoms or just standard CFS nonsense.

Any thoughts much appreciated!


r/cfs 2h ago

Treatments Can you know What's in apple gives me enrgy

6 Upvotes

I'm so severe I start notice this effect after I started ldn I search on apple and cider vinegar in this subreddit and the covid subb and found a lot of pots about apple Now I start connecting some dots I didn't have the ability to type on keyboard or phone fast but after ldn when I eat an apple I found myself able type like I was before cfs


r/cfs 5h ago

Success small win!

10 Upvotes

hi guys!!! first time posting here; i was diagnosed with cfs a year ago (along with pots and junior fibro), and have been struggling getting through the day. because of my stomach aches that i get with my pots, i have avoided any carbonation JUST in case.

but recently i had some, and realized it made me feel a little awake!! not the caffeine, but the bubbles!! feeling the electricity like feeling in my mouth makes me feel a little more aware, even if just for a moment. so far i've felt the best results from sparkling water!!!

not anything to write home about, and barely enough to make a change,,, but it's a nice little victory for me :) just thought i would share.


r/cfs 2h ago

Late night chit chat

5 Upvotes

Feeling kinda out of it atm. Does somebody want to talk a bit?


r/cfs 2h ago

missing connection

5 Upvotes

I want to feel more connection with people. i’m severely affected. how do you do it? i can not do video calls. sometimes text feels so disconnected or something; hope you get what I mean hè?


r/cfs 19h ago

Meme Who can relate?

Post image
79 Upvotes

r/cfs 17h ago

Success Convinced some people to protest in my stead and it's making me feel mentally a lot better

56 Upvotes

TLDR; I was mentally struggling from my inability to help and finally realized that even just existing despite ME/CFS is helping.

My mental has been RACING downhill since the start of the year. I've always been a "put up or shut up" type person when it comes to political things, so being mostly bedbound as I see what's been happening to my country has made me feel more useless than I have in a long time. It's a constant back and forth between fury with myself/this illness and despair.

However, I finally had success convincing some people I know to get out there and protest tomorrow (I said if there's ever been an instance you feel like you let me down, you can make it up by going to a physical protest in my stead) and it's kinda made it click for me that just me existing despite everything is helping me do my part.

If anyone else is feeling frustrated because of perceived inability to help, please try to tell yourself that YOU as YOU ARE is already help and you never know how your existence will motivate others to do more. I've been making MANY attempts for months to get able bodied people I know to get involved somehow and was really shocked when it felt like out of the blue someone finally did!

The days where I couldn't even speak/communicate have outnumbered the days where I could say "Hey it would be great if you could do x because y", but I had to exist despite that to be the reason some people were finally motivated to do more.


r/cfs 2h ago

Specialist appt next week, what meds can I suggest to try? I’m very severe. What I’ve already tried in body text

3 Upvotes

I can’t list EVERYTHING bc I’ve been sick for almost a decade and tried a lot of things.

But currently I’m taking Ivabradine, Midodrine, Flucrocortisone, LDN, Montelukast. Still very severe.

Most recently tried a one moth course of Valtrex, no result. Rapamycin no results and was affecting my lipids so I had to stop.

I’ve tried in the past propanol, atenolol, gabapentin, antidepressants, cromolyn, trazadone for sleep (had to stop) and the list goes on.

I’m thinking on asking again about Mestinon and LDA. another recent meds that people are seeing results and I can suggest to my doctor?

I think what I need to target the most is PEM and general tolerance to exertion (I have none), weakness including respiratory (PFT shows restriction), neuro inflammation like brain burning and hurting and also toelenwfe in cognitive exertion, GI/MCAS…

Thank you!!


r/cfs 1h ago

Advice Your first move ?

Upvotes

Hello everyone, I’m new here 👋

The last while has been a journey to say the least. I was a (albeit unhealthily) functioning/masking person diagnosed with CPTSD, ADHD, and EDS until a stressful battle at work to keep work from home accommodations last year was denied. The whole ordeal left me with severe cognitive decline and I became non functional and currently am on Long Term Disability. I’m no stranger to mental health exhaustion and brain fog, but this is unmatched and feels different than I’ve been used to my whole life. It’s been 8 months off work and I feel the same or worse, specifically in all the areas that I am realizing now are CFS symptoms. I have been experiencing pretty severe PEM that just keeps getting worse every month it seems. I’m technically able to get more rest than I ever have right now so it was concerning how tired I become after the smallest thing. It is to the point that even thinking about doing a small household task or having to work out something mentally (that used to be no problem) makes me feel like I’m suddenly overcome with exhaustion, sleepiness, and depression. I always thought it was “just” decision fatigue getting the better of me but now that I have found places like this and read up on it I wonder if it’s more (CFS). I’ve been silently suffering with the full extent of this intense and strange exhaustion, I often cry because I don’t understand how I’ve become so incapable of basic functioning. I don’t think I let myself admit how bad it was.

I will be asking my doctor and therapist about it in an effort to see if I fit the bill for a diagnosis, however it seems like not every medical professional has experience or much they can do. I guess my question is, when you suspected or found out you had CFS, what was your first move or step towards helping yourself? What was the best piece of advice you received or something you tried? Like I wrote above, every month seems to be worse and I would like to understand more so that doesn’t continue (I don’t know how much more it could some days).


r/cfs 5h ago

Midlands friends :)

5 Upvotes

This is a very long shot , but is there by any chance anyone in the Warwickshire/Coventry area around say 18-25 ( not rigid rules haha) looking for a mate ?

I'm 19 (male) , and I like languages and I play video games in my spare time :) - ( if you do play video games that makes it much easier to stay in touch outside of real life) I'm not sure how I'd describe my personality , potentially a bit cocky but I try to be as insightful to balance it out.

I don't go out much and that will be the case for as long as I feel how I do , but now the weather is picking up I'd enjoy having someone to chill -( even just sit and not talk) outside with every now and then.

When with healthy people I sometimes feel like I'm some sort of impostor pretending that I don't have this big weight around my ankle.

I live specifically in the Stratford - Warwick/Leamington- Kenilworth 'cluster' , with access to the chiltern main line .


r/cfs 22h ago

How bad is your brain fog?

85 Upvotes

Just reading through some other people's posts, im amazed by the level of cognition some of you have, level of self-awareness, ability to remember how you felt recently and properly identify what you're feeling at the moment, and to express all of this well well and clearly. These things often elude me. Just want to see how I stand amongst others, or maybe I have a different condition than CFS (because brain fog for me is always much worse than my fatigue). Brain fog simply leaves my brain with sheer blank emptiness and I speak no better than a toddler


r/cfs 3h ago

Child Onset ME/CFS Resources

2 Upvotes

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.


r/cfs 1d ago

Severe ME/CFS The Sick Times: We Urgently Need an International Task Force for Severe ME Crisis Cases

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thesicktimes.org
129 Upvotes

r/cfs 20m ago

Advice Dealing with having apartment maintenance over…severe

Upvotes

My sister and I both live together, and we’re both severe (my sister being on the better end of it)

I’m new to severe, and it has been about a year for her. When we’ve had maintenance in the past I was moderate and was able to handle all of it. Since we’re now both severe, I’m wondering how you tolerate/get thru needing stuff to be done/fixed?

We have a mandatory pest control spray on Monday and we’re both stressing so much it’s borderline crashing us. We assumed we’ll just stay in our rooms like last year but…I had to exchange a few words if I remember correctly. There is no exact time slot for it either, just whenever they come. Which makes it worse.

TLDR: how do you handle needing maintenance people over for things that are mandatory?


r/cfs 12h ago

Can someone explain diet and histamine response to me?

9 Upvotes

Mild-moderate CFS here.Dealt with CFS for ~3-4 years now following a severe EBV infection.

I've heard people talk about stuff like histamine dump(?) recently. I also have terrible allergies and experience moderate MCAS like episodes on a regular basis.

Eating sugar or a generally poor diet can cause me increased PEM-like symptoms after a meal. Especially if I'm trying to recover from a crash, my response to food can get really touchy. Does this have something to do with how my body handles histamine? Is there some correlation between histamine release and blood sugar? Should I be monitoring mine?

These are things that I think about. Any insights?