r/cfs • u/Mundane_Control_8066 • 8h ago
Do not, whatever the fuck you do, go onto a doctor subreddit looking for this disease. It will fucking destroy you. They genuinely do not think it exists.
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r/cfs • u/premier-cat-arena • 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:
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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.
Symptom Management:
Batenan Horne Center Clonical Care Guide is the gold standard for resources for both you and your doctor.
-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.
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
-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
a research summary from ME Action
Help applying for Social Security
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 • u/AutoModerator • 1d ago
Success Wednesday Wins (What cheered you up this week?)
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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 • u/EmeraldEyes365 • 5h ago
Activism In the States, the CDC’s NHIS is removing all questions related to ME/CFS & Long Covid. This will hurt our community.
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NHIS stands for National Health Interview Survey. In the US it is an important tool used by the CDC to gather information about the health of Americans. They are now rewriting the questions for 2028 to EXCLUDE any questions about ME/CFS, Long Covid, & fatigue. I cannot believe they are doing this.
This is another way to make us disappear & marginalize our community. If you follow the link below to Solve M.E. or go directly to their website at solvecfs.org you can see their page about this issue. They are asking for our help to keep these questions on the survey. They have included a template that we can copy & paste into an email to request these questions do not get eliminated from this important national survey.
I’m not doing well lately, & I know so many of us here are really struggling, but hopefully this is something that many of us can do. The template allows for patients & caregivers & family members to send that email. I’m going to send it in & ask that my family members send it from their email addresses as well. Hopefully many will be able to accomplish a relatively simple copy, paste, send.
I know so many of us wish we could do more for our cause but this illness is so disabling that we struggle to survive the days. I’m grateful to find one thing that I actually have the energy to do. I hope anyone in this community who is able will please copy the template & email it. Please share if you can. Please share in any other community you think should be aware of this issue.
r/cfs • u/Commercial_Bake_5884 • 4h ago
Doctors Finally found a good GP!
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If you're in the west Portland metro area in Oregon and looking for a good gp, see if you can get in with Dr. Shayla Reid with Hillsboro Internal Medicine. She is a resident but she is by far the best doctor I've seen so far.
Obviously, as a gp, there's only so much she can do for patients like us but she is the first doctor I've ever seen who already knew what me/cfs was. She asked me good relevant questions about my fatigue, pain, muscle weakness ect. And she did not bring up my mental health once even though I gave multiple mental health disorders. It's on my chart that I am seeing a therapist and psychiatrist and on medications so she didn't even bring it up! She also gave me a referral to what's called the CAIRE clinic which is OHSUs long covid clinic though I do think they treat me/cfs even if it's not covid related.
Before this, the best I'd had was my neurologist who at least agreed to look up me/cfs but I don't think she did much research and she kept bringing up my mental health issues and I kept telling her that I've had depression for decades and I know what it's like and this is not it. That neurologist did try to refer me to the CAIRE clinic but the referral has to come from a gp apparently.
Good doctors who will believe you and take you seriously do exist! I know they're hard to find but they're out there!
r/cfs • u/BrightCandle • 5h ago
Positive experience with a GP
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My usual GP is off sick so I got a different one today. It was about things that they actually treat but he asked what the housebound thing was about on the phone before he came to visit and I said I had severe ME and he said "Oh, I am really sorry that is an awful condition, your GP seems to have left that off your record so I will record that now". He didn't need to visit in the end.
I knew my GP had refused to add it to their records, they are a prejudiced shit, but I just walked into a good one randomly. Let's hope my GP stays off sick and I might finally get some help. I actually got some meds today for symptoms I have with a followup in a month!
r/cfs • u/ifidcyoudc • 8h ago
Success After 3 years, I was fully approved for SSDI today!
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Some of you may recognize me. I posted a picture of myself at the beach some days ago. I deleted it because I was self conscious.
Well, here’s another success story. Initially denied. Got an attorney. Took it to court virtually in August. Just got approved in October. I am legally disabled, and I am not ashamed.
r/cfs • u/Wake-Robin • 10h ago
I can't avoid crashes because I have no help
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Sometimes it feels as if there's an underlying assumption in ME forums, clinics and advocacy groups that everyone can access all the help they need to pace and minimize crashes. This is not true at all.
I'm on the severe end of moderate, live alone, and 16 years of ME/CFS. No one to move in with, no one to ask for help, can't afford any more than the small amount of help I pay for now (once a month). No other programs there to help me. On top of everything, I am living off savings (thank goodness I have some but it won't last forever). No one to guarantee a roof over my head, no secure housing to inherit. And so many people have it even worse.
Every day's a struggle to get myself fed. And I can't eat just anything due to food intolerances, which make the ME worse.
Some of us would love to pace enough to avoid crashes, but it's not possible when there's no help.
I wish this reality were acknowledged more.
r/cfs • u/Varathane • 7h ago
MS therapy may work in part by lowering EBV immune response
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Where all you ME patients triggered by EBV? I'd be knocking on my doctors door to try this MS treatment for the ME symptoms.
r/cfs • u/SallyAjj • 7h ago
Mental Health Chronically ill and living with abusive family members in a house that poisoned me
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So the title speaks for itself. I'm chronically ill and stuck living with parents who are physically and emotionally abusive. I got chronically ill after being exposed to black mold when we moved to our current house, and it's been 5 years now that I've had no life and no progress. I told my parents the mold was destroying my health, and they didn't care. I was so sick that I looked and felt like I was dying at one point, and they neglected me for the entire 5 years and gave me no support. Because of their cruelty throughout my entire life, I find it really difficult to interact with them in any way. If I do speak to them, even on rare occasions, I only regret it. I feel like I'm stuck here. I used to be a bright, happy, upbeat girl, and now I'm still stuck in a loveless, cold home with no empathy. I'm so depleted; I break down every day. I just got awarded disability recently, but it's on the lower end and wouldn't be enough to move out. I don't want this to be my life. I don't know what to do. I wish I could be healthy enough to move out, but my symptoms are severe.
r/cfs • u/Buzzsaw_Studio • 9h ago
Activities/Entertainment Heart and Soul Nebulas
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Hello all, I am sharing my latest astrophotography project. I was able to set up my telescope and camera rig near my bedroom so that I could control it from bed via an app on my phone. With my wife helping me get everything setup I was able to collect photos of this target for multiple nights and then edit everything over a few days in short periods. My baseline has declined over the last few months but I will not let that stop me completely from imaging the cosmos and I'll share these projects as long as I am able.
The heart and soul nebulas are a stellar nursery located around 6800 light years away in the constellation of Cassiopeia. This image was created using specialized filters to separate the light coming from areas of dense sulfur, hydrogen, and oxygen so that I could recreate the color palette made famous by the Hubble telescope.
r/cfs • u/grumpy_grl • 14h ago
Those who have been sick since teen years - could use some parenting advice
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My teen came down with a virus a year or so ago and has experienced extreme fatigue ever since. We are in the process of ruling out other conditions but it looks like it may be ME/CFS. I have this myself but I got it as an adult so I am not always sure how best to help them.
Those who have been sick since they were younger - what things did your parents do that were helpful? Anything you wish they had done differently? Any other advice?
Right now we are homeschooling our kid and prioritizing socializing time over actual school work. They can only tolerate an hour or two of mild activity a day so not much actually school work is getting done. They are an only child so my thinking is that keeping them from sliding into depression is more important than math worksheets and we can catch up on schooling later if they improve. Thoughts on this approach?
r/cfs • u/the-cosmic-thinker • 8h ago
cant do this anymore
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I can’t help it but I cant do this illness anymore.
Moderate cfs was somewhat liveable, but severe and very severe are another level. it’s no life at all. It’s just breathing to stay alive and nothing more
I’m so sad 😭
r/cfs • u/Curious-sun-0 • 8h ago
Meme Me speaking to my body
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maxing out on adrenaline vibes
r/cfs • u/Kukukuchoochoo • 9h ago
If you have a spouse do you sleep separately?
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I'm moderate and have recently been having conversations with my wife about us sleeping in separate rooms to allow me to get a better rest but she is absolutely heartbroken about this.
She works hard to support and care for me and take care of much of the house stuff so I can pace, and she's had to adjust so much already to our new lifestyle because I simply can't do the things we had hoped to do etc. but this for her feels like a rejection and a change in our relationship that she can't be ok with. (We've been together 27 years and love each other very much.)
What is your experience of sleeping arrangements? What works best for you? Have you found sleeping separately helpful?
r/cfs • u/Top_Memory8968 • 14h ago
Do you think there will be a cure in our lifetime?
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Hey fellow me/cfs’ers
There is a huge contrast with various differing opinions on this topic. However, one question that pops up my mind is do you think there will be a cure in our lifetimes? Like next 20-40 years? Do you think we are moving in the right direction with regards to that?
r/cfs • u/Ok-Giraffe-4332 • 4h ago
Advice Does anyone here live alone and manage to have a pet
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How do you manage it?
I think it would really help my quality of life. I currently see carers 20 hours a week and it’s not daily so I am not sure how I could manage.
I am moderate.
r/cfs • u/Lunabuna91 • 9h ago
Has anyone severe/v severe FT carer (parent) told you that you make them miserable and they need a break? Mines been snappy and sighs a lot since day one. A huge bust up today. I feel like I’m dying from it & in severe pain
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I often hear why can’t I just be more positive for once. Yes they do everything for me but I can tell I’m an utter burden. When I first got sick we argued 24/7 about my needs. Now I’m v severe. Text argument btw. They raged at me and said they walk around miserable because of me etc etc. I’ve gone nuts about it. Woops. I’ll likely delete this. They’re the only person I have and now I feel like the relationship will never mend, I don’t want it to tbh. I am rambling because my head is about to explode. She says it’s me and I make her feel guilty and I’m passive aggressive because I say things like “I did this to save you doing it and now I’m crashed” but I don’t do it in that way, it’s to prove I’m trying. Pointless.
r/cfs • u/Past-Increase-2969 • 18h ago
Comorbidities How do you stay sane when you have ME and are neurodivergent?
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It seems like I'm sabotaging myself everywhere. Can't seem to get anything done. It's like the most annoying comorbidity holy hell, and as dumb as that sounds, really makes my severety seem higher then it would be without it. And I can't really have any conversation without people thinking I'm an asshole afterwards? I'm not an asshole and I'm thankful for anyone who is ready to talk to me and help me. Idk where people always get that. My whole life I've been framed as a bad person with no empathy, and it just keeps getting worse and worse and worse.
Is there anyone who is neurodivergent and ready to share their tips? Kind of losing my mind over here.
oh yeah and edit cause I need this question answered: is there any autistic person who doesn't immediately fall into autistic burnout upon falling sick? cause my skills flew out of the window from the first day on.
r/cfs • u/kitten_called • 9h ago
Moderate ME/CFS Other than rest/pacing, what’s most effective for you? (Moderate & severe)
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Please let me know what works best for you & expand in comments (e.g. which meds).
Personally, - other than rest/pacing - medication works best for me (mainly Low Dose Naltrexone 4.5-9mg, also medicating POTS & MCAS).
POTS: bisoprolol 5mg, Ivabradine 5mg AM 2.5mg PM
+ vast amount of water and Electrolytes daily (get kidneys checked every 3-12 months if you take meds processed by kidneys and have high salt intake)
MCAS: not sure if I have it or if it’s just allergies. I do triple therapy: H1 & H2 blockers (fexofenadine 180mg x2, famotidine 40mg), and Mast Cell Stabiliser (3mg Ketotifen).
Melatonin 1mg for sleep.
I’ve tried quite a few meds, but I’m yet to try meds like Low Dose Abilify, Mestinon, Low Dose Rapamycin.
Supplements:
I found Ubiquinol (most bioavailable CoQ10) helps when taken with dietary fat.
I’ve never really noticed diet helping, but I think my only chance of getting a bit better involves trying to improve EVERYTHING. That includes my diet, and also starting to meditate or do deep rest again. I’ve tried it all before, but I feel like I really should try to keep on top of it all. I really hate meditation because I have ADHD.
188 votes,
4d left
Medication
Diet
Supplements
Relaxation (e.g. meditation)
Other
r/cfs • u/VeterinarianFit3057 • 42m ago
Symptoms Is this ME/CFS?
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Sorry this might be a long read, it’s been quite a journey.
I’m a 42 y/o M from the Netherlands. Last year af the beginning of November, I got sick. I think I ate some bad food and had diarrhea for 4 days. Made me lose about 4kg.
My current ongoing symptoms:
- Palpitations. Especially after physical activity or when getting out of bed to pee at night. It’s like my heart needs to work hard to keep/start up my system. I notice them in bed mostly because of the silence I guess
- Abnormally high heart rate even during light activity like walking (up to 130).
- Pain in the front of my neck/throat area
- Pain in the left side of my upper body. Mainly my neck, upper chest, arm and hand. Kind of tingling nerve pain
- Heavy, leaden feeling in my limbs – especially my calves. My calves can feel really tight even though I didn’t use them too much. Sometimes I have a loss of power in my arms, my dominant arm mainly
- Fatigue. I can live with pain, but this is my main blocker. I’m not severe though
- Random night sweats
- PEM
- A couple of months ago, the doctor saw I had an EBV infection before but told me he can’t find out when this was.
- Tired but wired which makes it hard to sleep often. Waking up at 4AM with a really wired feeling makes it hard to get back to sleep
The palps and fatigue are pretty much consistent. The other symptoms seem to come and go. I was (and sometimes still am) the push through type of person. After being sick, I picked up my active social life. A lot of sports and hanging out with friends. I was actually still able to play football for 90 minutes. Something felt ‘off’ though. My body wasn’t recovering like it used to. In March 2026 I knew I couldn’t go on like this after crashing at 2 PM on a random Tuesday. Could never sleep at daytime but I slept for 3 hours. Waking up groggy and could hardly stand on my feet. I stopped doing sports and being really social.
After a shitload of testing my blood, the diagnose by my internist went from dysautonomia to PAIS (long covid) in the beginning of March and to ME/CFS a month ago. I’ve seen a cardiologist as well and had a 24h holter and quite some ECG’s. Had a cardiopulmonary exercise test at the end of May. 15 minutes on a bike really f’d me up for about a month. My legs felt crazy heavy. ‘Funny’ thing was that conditional, I was in the top 20% score of men my age even though I felt like a wreck.
Meds and supplements I’ve tried:
- NAC: this seems to help a bit with fatigue
- Omega 3 fish oil
- Vitamin C
- B12
- Magnesium bisglycinate
- Glycine
- L theanine
- Doxylamine (to help me sleep). I’m phasing this out at the moment because it might ‘stimulate’ palps and feeling tired
I have LDN in my fridge but haven’t tried it yet because I want to phase out doxylamine first (at week 4 of 6). I was prescribed Ivabradine but afraid to use because my resting heart rate is already below 50 when I sleep sometimes (cardio didn’t tell it’s better not to use when RHR is <70). Maybe I’m still trying to believe my body will heal itself :)
I must say, I had a rough last 3 to 4 years in terms of stress. After 38 yrs I found out I had a different biological father than I thought. Because of this, I hardly have contact with my family. They knew without telling me. My ex gf had a miscarriage. We both had a hard fime with different views of the future which made me decide to break up with her after 12 yrs (toughest decision of my life). Luckily I found a new apt quickly so I moved out. I really felt lonely that period. So I had a lot of stress before getting sick. Luckily I get help from a good psychologist.
Luckily for me (so sorry for a lot of you), I can work about 4 hours a day. I can walk about 6000 steps a day (not pushing). I can do some things with friends but not in large groups as this is too overwhelming. I do daily rest periods to get through the day. Most of the time, a short rest or power nap gets me through the rest of the day.
If you made it this far -> I’m genuinely looking for people who recognize this pattern, or anyone who has found something that actually helped. Any tips or shared experiences are welcome. Thanks!
r/cfs • u/suzume1310 • 23h ago
Research News Severe Long COVID Linked to Oral and Lung Microbiome Changes
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Would be very interested to see this study done with me/cfs patients
r/cfs • u/Mysterious-Many-796 • 12h ago
This joke with the sensory sensitivities has to end some time soon
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I'm not looking for treatments. Everything failed.
I'm just wondering WTF no research is looking for mechanisms of the light/sound sensitivities. It's the N. 1 thing that sends us to the psych ward.
Yes it's complex. If it wasn't we wouldn't need any research done.
r/cfs • u/missCarpone • 19m ago
Mental Health ME-specific nightmare
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TLDR: Last night I had a nightmare that contained a lot of my fears specific to ME, I'm amazed at how spot-on the dream was
I dreamed I was going to a doctor's appointment by bus. During the ride, I was standing because I didn't dare ask for the disabled seat. I was worrying about the risk of infection.
(Reality check: It's autumn here and everyone is getting sick, I was thinking recently how it's amazing I've gone two years without a severe infection being care-dependent).
At the doctor's office, the intaking nurse smirked derisively and incredulously as I told her my symptoms. I could see she was adding her interpretation in the notes, like "purportedly...", "thinks that..." instead of neutrally taking notes. I called her out on her facial expression and the biased notes, but to no avail. I felt very angry and helpless.
(This has not happened to me so far, but I'm scared of it. Also, my specialist who did infrequent bedside visits is on sick-leave long-term, maybe not coming back).
When the doctor came in I briefly saw myself through his eyes and what was most salient was my Parkinson's-like, distinct tremor in the left arm.
(My mom had Parkinson's, I'm scared the invisible inner tremor I have might be a precursor of it).
He then told me I needed to have a nerve conduction study (NCS) and an MRI. I refused the NCS and was ridiculed for saying the pain at the last NCS was excruciating and what crashed me into bedbound two years prior.
(I did have a very painful NCS of my legs done that I believe triggered a severe MCAS flare and thus was partly responsible for crashing me into bedbound 2 years ago - which I still am, btw. Also I couldn't have an MRI due to being very severe - the transport and noise would crash me, potentially further worsening my situation. If I could I'd want an upright MRI to check for CCI)
I told him about pain being a trigger for MCAS and they obviously didn't know about MCAS. I left for another doctor's office who I'd been told about, again by bus. I was worrying about getting PEM from all the exertion. Then I realized the doctor's office was going to be closed when I arrived so I went home instead.
(I've not left my bed for two years so being ambulatory was amazing, but I'm indeed worried about getting better and then be expected to do a lot of exams and be in constant PEM and getting worse again. Hats off to everyone who's juggling that).
I was surprised that my subconscious has presented me with such an accurate rendition of some of my more nebulous fears. I don't often dwell on them.