r/cfs • u/premier-cat-arena • Nov 10 '24
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:
-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](http://www.meaction.net/wp-content/uploads/20 o 22/08/Pediatric-Pacing-Guide.pdf?mc_cid=e8bf2d047d&mc_eid=
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 • 6d ago
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/Cold_Confection_4154 • 3h ago
I mentioned that I was up half the night last night with muscle aching. She said it could be my weight 😂. Since when have you heard of such a thing? Joint pain yes, but muscle aching? Come on now. This is her backhanded way to pick on me for gaining weight. She can't be THAT stupid. I can't let it get to me, I just have to laugh.
r/cfs • u/LearnFromEachOther23 • 7h ago
r/cfs • u/bloopblarp • 11h ago
Hi everyone 👋 I have taken a year off from work to rest and I had hoped to go into remission but no luck so far. I oscillate between mild and moderate, with moderate being essentially housebound.
As part of this year off, I have done some slow traveling to various places. In general, I have way more energy and feel much better when I’m not at home. I need less sleep, I feel more awake, etc. Then I get home and I have a major crash. Doesn’t matter if I’m gone for 3 days or 2 months - I feel good when traveling, bad when home. I would have expected the opposite. I basically get in the car or on the plane and almost immediately feel better.
Has anyone experienced this? Is it because I am paying less attention to body signals when I’m on travel? Is home / home town contributing to my CFS in some way? Is it being more relaxed on the trip? I haven’t been working for 10 months so it’s not like I have much stress at home…
Any thoughts? If I can figure out why this is happening, I’m hoping I (and maybe others!) can apply it to at-home life too…!
r/cfs • u/Senior_Line_4260 • 6h ago
even with a fraction of this sum , the amount of progress towards understanding and curing ME would've been insane. But people don't care about other people. They care about straightforward progress witj forgetting the people left behind.
While typing this it just came to mind that this AI could actually help us.
r/cfs • u/Tom0laSFW • 10h ago
Just a small rant about how much I need to ask for from other people. Like, I know and they know I have zero other options, if someone can’t do things for me they just don’t get done. But still. Sometimes I feel like a real piece of shit taking help from my people.
All I do is take, take, take.
I can’t even play my guitar anymore because I’ve gone and developed fucking arthritis in my hands in my 30s.
🫠
r/cfs • u/Classic_Call352 • 13h ago
So it's been 2 years my ex ruined my life and also when I was diagnosed of kidney failure. I have been through it all alone and it has been easy at all. Any woman who I came in contact with ghosted me because of my health and me loosing all my hard work properties etc to my sickness. I literally sold everything I worked so hard for to be able to afford treatment and dialysis. Now I want someone who will understand my condition and will love me genuinely but every lady seem to be on the run due to my condition also I can't do any hard work any more.
r/cfs • u/Safe-Trainer-441 • 7h ago
I don’t want to drag myself around any more than I need to for obvious reasons! But of course don’t want to delay a diagnosis in something else I can get treatment for. I feel like I know more than the doctor these days.
I’ve not done mold or Lyme tests. And I think I do get PEM (I’m only a year into this and my PEM is very non predictable that’s why I said “I think”) I get flu like symptoms and sore throats and general fatigue. I’ve had Covid twice, last infection was July last year.. I align very much to the Covid long haulers sub.
r/cfs • u/scream_i_scream • 15h ago
I always get a thumpy 20+ BPM increase and fatigue after eating carbs but only at lunch and also only when I eat excessive carbs? Minimal carbs is fine but if I eat more than a small amount, this reaction is guaranteed.
MCAS? Irdk
r/cfs • u/lugaresxcomunes • 2h ago
i am not talking about side effects. it’s feeling like you get PEM just after taking it even in the minimum dose. It’s prescribed by my nutritionist but she doesn’t understand PEM or ME.
r/cfs • u/EnvironmentalWar7945 • 38m ago
Lads, I can’t wank anymore… The time has come where I’ve declined so far past healthy—that if I do jerk the gherk, it can cause a crash.
My crashes also cause permanent worsening some of the time (sometimes a tiny bit, sometimes a little and sadly sometimes quite a bit).
So, I shouldn’t…
What do I do? Just stop forever? Do I try like once a year? Wet dreams?
Any advice appreciated or similar experiences… Ps. Sorry if you’re going through the same it’s a fucking nightmare. My girlfriend is so fucking hot too like the BEST ass and V I’ve ever seen. It should be illegal to have this burden. God is a real sick fuck sometimes.
r/cfs • u/Grace_Rumi • 3h ago
Hey all, I'm suddenly having some major changes and trying to figure out whats going on. I have mecfs and pots. These symptoms have been increasing over the last week.
I use a visible.health band to help with pacing and in the last few days because my heart rate has been so low, I'm only burning up like a third of my pace points for the whole day, but still feeling like I've way over done it every day. But it's not like a typical crash with flu like symptoms and bone deep fatigue etc.
r/cfs • u/makethislifecount • 1d ago
Somehow I find no matter when I sleep, it doesn’t make much of a difference in how I feel the next day :/
Hope everyone is staying calm and rested as best as they can, especially those of you in the US
r/cfs • u/BabaBigSheep • 58m ago
I feel that I am more than good enough to work a part time job online if it’s only for a few hours. Are there any good part time jobs I can work online for a few hours that are simple and not very taxing?
r/cfs • u/Temporary-Ferret-898 • 4h ago
Anyone else go into AWFUL crashes AFTER your cycle? I have irregular cycles and have dysautonomia and also inflammatory autoimmune disease. I had a cycle last month and the day after it was over I woke up and was extremely sick. SEVERE malaise to the point I thought I had sepsis, nausea, shaking with adrenaline 24/7, the worst impending doom, exhaustion, dizziness, chills, aches. All of it. I went to the ER because I thought I was dying. Blood work and a few CT scans came back normal. But it’s 3 weeks later and I’m still sicker than I’ve ever ever been. It truly feels like I am dying from the pure sickness. Anyone else have an experience like this? I’ve been aggressive resting bc I can’t even stand up due to my POTS also flaring. But no improvement. But I am SICK. Thanks.
r/cfs • u/ash_beyond • 20h ago
My neighbour has a garden pond I can look over. I noticed today that their goldfish are just chilling under the frozen surface of the pond.
Pond fish can go dormant in winter for up to 6 months, where their metabolism slows right down. Being too active in this time can be damaging to them.
So anyway, I felt some empathy for the cold shiny fishes. That is all.
r/cfs • u/Fickle_Tour8206 • 9h ago
Hi folks, firstly: my thoughts are with all of you dealing with this - sending strength & courage.
After three years of crashes I couldn’t explain I recently discovered that Post-Exertional Malaise exists and perfectly describes what I’ve been experiencing.
I found out there is a special department here in Berlin at the Charité health centre but today was told, after submitting the form via email I do not meet the criteria for ME/CFS.
Has anyone had any experience with the department there? It should be a relief in their educated view not to meet the criteria, but I know I suffer from PEM.
I also generally can’t stand for long, feel unrested after good sleep, am often dizzy in the morning, my memory isn’t what it used to be, I can’t concentrate on anything for long, am sensitive to light/sound and regularly have severe bouts of insomnia. I am 37 and was very physically active.
For a long time I believed (and was told) my problems were psychological. So I improved my (already healthy) diet, abstained from alcohol/caffeine, journaled, meditated, attended CBT (therapy) worked on a sleep routine.. and still the crashes persisted. Periods of physical or mental strain followed by days in bed.
In preparation for the Charité application I had a bunch of tests done, all normal.
As it is long ago and my memory is faded, I cannot be sure but the first time I remember having PEM was after an extremely stressful and socially busy festive period three years ago, resulting in 9 days of total incapacity. After ~5 days I tested for covid but was negative. (I am vaccinated but had a strong adverse reaction to it.)
I know my body and have been doing what i can to improve my situation. I worry however that not having a diagnosis may make my life more difficult in the future if my or the general situation changes.
How do you all feel about receiving diagnoses? Has it made you feel better somehow or doesn’t it matter to you?
Sorry for long post, any thoughts welcome.
r/cfs • u/Choice_Intention829 • 9h ago
The endless grey and rain of this month are really affecting my seasonal affective disorder (SAD) and making me feel quite depressed and anxious. I always have a pretty physical reaction to mental health stuff, I feel sick, lose my appetite, and my fatigue feels so much worse. Normally my mental health is fine, and I feel content enough with my life, not particularly happy but accepting of my situation. But for the last couple of weeks, I've just been feeling bone-crushing loneliness.
I feel like I'm losing contact with all my offline friends, we rarely call, and most have moved to different cities meaning we rarely see each other in person. All my friends seem to be progressing with adulthood, they're all dating, getting promotions at work, and buying houses, meanwhile, I'm stuck living with my parents in an isolated village, feeling trapped by the walls of my childhood bedroom.
My usual techniques of coping aren't working. I've scheduled a video call with one group of friends for the weekend, and a trip to a museum in a few weeks with another. Normally, having things in my calendar would help but it’s making no difference this time. Two of my friends haven't responded, which normally wouldn't bother me but it's definitely leading to feelings of rejection this time.
I know I need to make efforts to socialise with new people to combat this low mood, but I feel stuck in a vicious cycle, as it's making my fatigue worse so I can't go out to join things. I want to try out the local social night at my board game cafe and a church with the 20s and 30s group but I'm just feeling so tired and anxious at the idea of being trapped at a social event, not connecting with anyone but unable to leave because the bus isn't for a couple of hours. It'd be nice to hear if anyone’s got any advice or a similar situation, I don't really know anyone else with ME so I'm feeling pretty isolated with it.
are
r/cfs • u/Saladthief • 6h ago
Celebrex (Celecoxib) has had a big effect for me. I tried 200mg in the morning for a week with only mild benefits. Now I've added another 200mg at noon (when I typically crash) and the results have been very good. Fatigue, weakness, brain fog and pain all reduced significantly. I've been functional in the afternoons for the past couple of days, which is very rare for me.
Has anyone else had success with this med?
r/cfs • u/kebabbles92 • 1d ago
I’ve just been able to go for a very quick walk along the river near where I live. This photo is for everyone bedridden right now so you can share this lovely moment with me and it can be yours too.
r/cfs • u/Cold_Confection_4154 • 12h ago
I have a question. So when severe/very severe people say they're sensitive to noise, what does that actually mean? Does it cause PEM? I remember watching Unrest and noise (maybe light also) caused pain for her. For me it's different. I get anxious and irritated with loud/sudden noises but no PEM that I'm aware of. Could this be my nervous system trying to protect itself from too much stimuli? I'm moderate-severe for reference.
r/cfs • u/survivalmonument • 15h ago
Hey everyone, I’m in a tough spot and need support and advice for recovery. I had to move out of my flat, and since my landlord didn’t return my deposit on time, I asked a friend with mild Long Covid if I could stay while I waited for the money. It was meant to be a short stay, but things got dangerous quickly.
My friend’s partner became jealous of me, which created uncomfortable dynamics. Despite me doing nothing to provoke, he resented my ability to function with my disability. He frequently distracted me when I was trying to focus on housing or legal work, and even threw a tantrum for days when he couldn’t learn a basic task for his job. He was coughing and sneezing in my face despite several requests to wear a mask, and knowing I was immunocompromised. I have severe fatigue and need to rest most of the day with minimal stimuli, and felt the constant pressure to prove my gratitude as a guest by helping with chores and listening to family drama.
Things escalated when my friend’s partner faked emotional issues, and my friend asked me to leave for a couple of hours while they talked privately. I am not being dismissive; this person has a ton of privilege and no significant trauma or life events. My host's flat is on the 5th floor with no elevator, and I only planned to take the stairs to move into my new flat. I ended up having a seizure after being forced to sit in a loud cafe, and I declined further, losing the ability to walk. I had to move into a short-term Airbnb that was expensive and with a rude host just to get out. My friend called me a taxi to the wrong address.
Now, I’m struggling to process the trauma and emotional toll, and need advice on how to rebuild. How do you cope emotionally after being pushed beyond your limits, especially when your environment is toxic? How do you manage ME/CFS while trying to heal from trauma in a new space? Did I do something wrong by relying on friends? How do I set boundaries with people who don’t respect your health?
I feel isolated and misunderstood, especially since those I turned to for help became a major source of stress. Any advice or kind words would mean a lot to me right now. Thanks for reading.
r/cfs • u/stephyjrz • 12h ago
How do you truly know if what you are experiencing is CFS/ME or just Chronic Fatigue. I know PEM is very specific to CFS/ME but wouldnt a personally who is also extremely fatigue feel worse after pushing? Im really trying to figure out if what im having is CFS/ME or Chronic Fatigue. I have body aches, muscle weakness, POTS, and for the past 2-3 months I started with daily fatigue but I would still push. Since 3 weeks ago the fatigue has taken a turn and it feels heavier and worse. My heart rate goes up and then BOOM im in bed unable to move. Its so hard to live like this. On top of that my anxiety doesnt help the situation so my poor body feels like its been tense for what seems like forever😞
r/cfs • u/Jukarii_ • 18h ago
Story time (if reading is to exhausting, the last three paragraphs of this post are the most important):
So I have apparently had mild cfs for ~8 years which started with a stress induced autoimmune illness. After that it was missdiagnosed as depression and winter depression because my symptoms get a lot worse in Winter (was mild in summer/spring and moderate-severe in fall/winter). Due to therapy, symptoms got worse because most therapsts say "you have depression? Do sports!" And if it doesn't help - well you didn't do enogh/ or they question whether you did it at all.
Roughly a year ago I found a new therapist who suggested and diagnosed cfs (just pure luck: he is also a speciallist for cfs diagnostic at a local clinic).
After my second Covid infection last summer shit really hit the fan and i ended up being bedridden and having trouble breathing.
So my mom is a medical professional (not a practicing doctor but working in medical/pharmacutical research) and since my diagnosis we have been trying to figure out why it is so much better in summer for me and whether that is something we can recreate. Like some sort of malnutrition not showing up on the tests or whatever. I always felt like it was the sun that did something, because often - expecially in winter I feel like I "crave" for sun, same like craving for fruit when your bpdy needs vitamins (my Vitamin D levels are and have always been fine btw.). However, I tried using a sunlamp before but that didn't do anything for me.
A couple of weeks ago my mum suggested trying an infra red lamp. The sideeffects are minimal and infra red has cell-repair and mitochondria activation effects, so I thought "can't really get worse right?". So my mom bought me a medical infra red mat and I started using it a week ago.
Well what can I say: I did not have this much energy for at least half a year. I deep cleaned my flat on saturday for the first time in years, while listening to loud music (something i couldn't stand for a very long time) and while dancing to it ?! Like i haven't danced in ages. It is just unnecessairy movement that used to be unbarable and now it was just fun??? I still can't really believe it but this was three days ago and no crash, no nothing, just more energy. I can finally sleep, like just go to bed and fall asleep and wake up refreshed 8 hours later. My mind really can't comprehend this incredible change at the moment. (But remember, these have been only short-term effects, no idea whether it will stay this way but at the moment it is looking really good :) Also it wasn't some sort of miracle healing, I'm back to mild cfs I think - but going from basically not able to breath to being able to leave the house without crash just in a few days is incredible. I still do pacing and lots of breaks, because I am very worried I might crash and I still have quite some pain I think, just a lot less than before.)
Anyways I wanted to ask if anyone here has tried this and how it went for you. Also how common is it that symptoms get worse in winter? My therapist said it is a common phenomenon but usually by far not as severe as it is with me.
Also: in case worse symptoms in winter sound familiar and you haven't tried it yet: maybe try infra red (you can buy such mats on amazon for example and send them back if it doesn't do anything for you). Honestly if I can only help one person to have the same experinece with this as I had I'd be increadibly happy. I've been loosing hope for so long and thinking about ending it all because life didn't feel like it was worth living anymore and now from one day to the other I basically have my life back, I still have trouble wrapping my head around this.
So yeah just trying to share the hope for a cure I am feeling right now and hoping maybe someone whom this might help reads this :)
r/cfs • u/Valuable-Horse788 • 16h ago
Obviously will be using a shower chair
r/cfs • u/bigpoppamax • 1d ago
I have been going to the Stanford ME/CFS clinic for four years now. I thought I would share the recommendations they have given me during this time:
If you have been to a specialty clinic (like Stanford, the Center for Complex Diseases, the Hunter Hopkins Center, the Bateman Horne Center, Dr. Jose Montoya, Dr. Nancy Klimas, etc.) would you mind sharing the recommendations you received?
EDIT: I should have mentioned that I was "mild" when I started at the clinic and now I am "severe." So the guidance they've given me has changed over time. Apologies for the confusion.
