Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Classic_Call352 on 2025-01-21 18:38:04+00:00.

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.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Efficient-Might-1376 on 2025-01-22 11:48:04+00:00.

So they are more likely to give a correct diagnosis.

Lauterbach is a good advocate for us :)

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Choice_Intention829 on 2025-01-21 21:56:54+00:00.

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

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Senior_Line_4260 on 2025-01-22 01:23:05+00:00.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Cold_Confection_4154 on 2025-01-22 04:20:19+00:00.

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.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/LearnFromEachOther23 on 2025-01-22 00:29:30+00:00.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/survivalmonument on 2025-01-21 16:28:35+00:00.

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.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/fierce_invalids on 2025-01-21 23:10:31+00:00.

He struggles with me being disabled and is obsessed with being thin. If there are any actual medical studies on sugar and MECFS specifically I'm interested in those but otherwise I think cutting out sugar is just another goose chase

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Tom0laSFW on 2025-01-21 20:55:30+00:00.

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.

🫠

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/bloopblarp on 2025-01-21 19:49:22+00:00.

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…!

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/scream_i_scream on 2025-01-21 15:58:10+00:00.

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

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Jukarii_ on 2025-01-21 13:19:14+00:00.

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 :)

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/ash_beyond on 2025-01-21 11:08:09+00:00.

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.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/theboghag on 2025-01-21 00:38:01+00:00.

Sometimes this feels so surreal. Like, how is this possible? How of all things did THIS happen to me? How did this happen to ME? You read about and hear about people going through the fucking shit and you never for a sake really comprehend that it could be you. It's wild. Wild. Any able bodied person at any time can become disabled for any numbers of reasons and remain that way. Like a plate that's been in the cupboard for years and one day it falls and shatters. It was, it was, it was, and then it isn't. Of all the maladies that might have befallen me, it's the one that has turned my bedroom into a tomb where I lay and stare at the wall or the insides of my eyelids, feeling the minutes tick away while I think it how much I wanted to hike the Pacific Crest Trail or go on a week's long road trip around the British Isles or be able to deadlift my own weight or be able to paint my own goddamn bathroom or go on working the job that I loved, or what the fuck ever.

I'm finally to the point where I'm going to have to quit my job and I'm overwhelmed with grief as more and more slips away from me. I enjoy a higher degree of able-bodiedness than many of the people who live with this illness and I'm very grateful for that, but I'm tumbling down a slope toward more and more disability and I don't know when it will stop.

For now I'm trying to stay grateful for my intensely loving, caring, and supportive husband, my sweet animals who keep me company, and my ability to read books on my Kindle sometimes and talk to strangers all over the world so that I'm not desperately lonely.

It's all I can do.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/makethislifecount on 2025-01-21 05:31:19+00:00.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Cool_Direction_9220 on 2025-01-20 21:34:53+00:00.

I have been moderate-severe for years. It has been difficult to read for 5ish years. I got a cpap in early December and it has put a little dent in my brain fog. It's small, but when you're in the moderate-severe range a small shift really matters. Sleep apnea is very common and not breathing while you're sleeping obv can only make you feel worse. I read a little bit every day and it really improves my mood because I love reading!

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Dumb_Goldie on 2025-01-20 18:18:33+00:00.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/bigpoppamax on 2025-01-21 02:07:18+00:00.

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:

1. Eat a mediterranean diet. If carbs make you feel worse, then avoid them.
2. Avoid crashes as much as possible. They could make you worse long-term.
3. Wear a fitness tracker and try to take less than 5,000 steps per day.
4. Get a tilt-table test to see if you have POTS (in addition to ME/CFS).
5. Avoid environments that are overstimulating (i.e. loud restaurants, listening to the radio while driving, etc.) because they will drain your batteries quickly.
6. Listen to your body. If you start getting "warning signs" of overexertion (like hand tremors or dizziness) then go lay down immediately. Do not push.
7. Stimulants (like Adderall) don't solve the underlying problem. They give you "fake" energy which can lead to overexertion (and crashes).
8. If you have a social outing planned (like dinner with friends), then rest for several days beforehand (to prepare) and then again for several days afterwards (to recover).
9. There isn't enough evidence that supplements work.
10. Medications: Minocycline, Ketotifen, Plaquenil, Celebrex, Low-dose Abilify, Low-dose Naltrexone, Famotidine

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.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/missspotatohead2 on 2025-01-21 00:31:01+00:00.

Anyone else just really need a hug and a cuddle. I’m so drained of this. I’m bored of it and theres no end in sight. What am i getting out of this? Just pain.

Lots of tears have been shed this last week. I’m emotionally drained at that too.

Sending you all love from one bed to the other.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/kamryn_zip on 2025-01-20 22:13:25+00:00.

My OT has generally been great, very supportive and helpful with pacing. She gave me a sheet with a stoplight system where most of my tasks should be green (doesn't increase symptoms at all) some can be yellow (may increase symptoms like pain or shortness of breath during, but it doesn't linger) and none should be red (causes PEM). I am moderate and Saturday/Sunday I had a crash. Sunday was so hard, I had to take my dog out and just getting dressed for the cold was so hard. I ended up collapsing and laying on the floor for a while before rallying and getting the job done. My therapist asked how many times I got up in the day. I estimated 7, 2 dog outs a few bathroom breaks, to get some more food and refill my water, and to brush my teeth. I get that's still a decent number of moments out of bed compared to severe folks, I am grateful to have at least enough independence to not need a bedpan and to be able to brush my teeth atm. That said, even doing that much I was in so much pain and so miserable. I didn't even really watch videos or play games for the day because I couldn't think or look at screens for long.

My OT heard this and said that was a lot of up and down, but rather than make recommendations to have a spit cup and brush my teeth in bed, or a bed pan or smthn, she recommended that while I am up I try to add in a couple extra laps walking each time I am up. I started crying almost immediately, I'm not sure if I'm extra sensitive or way off base because I'm just coming out of a crash so I was hoping for some reality testing from the community. She told me that the change in position is often hard on the body, so staying up for longer actually reduces the strain. I was crying because I was thinking about how profoundly miserable every single time I got up yesterday was, and picturing telling myself "No, you can't lay back down yet, you need to do a little bit of extra steps" ;_; Is she right to say that I should stay up and add some extra steps in order to go longer without changing positiion?

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/CelesteJA on 2025-01-20 21:34:45+00:00.

I know we're not meant to push through, but there are times where I have no choice when I need get up to use the bathroom or something (I don't have a bedpan).

And when I do push through it brings me to the verge of tears. Not from sadness, but from the overwhelming uncomfortable sensation throughout my body as I'm pushing it beyond it's limits.

Before I got ill, I saw videos of people who had been in comas for years and were having to train themselves to walk/hold themselves up again, and they would be crying while pushing themselves to do so. It makes me wonder if it's the same kind of overwhelming sensation as that.

Edit Interesting. It seems everyone has different reasons for why they cry when pushing through. For me it's nothing to do with sadness, anxiety, shame or exhaustion. It's the uncomfortable sensation of every muscle, nerve and bone in my body feeling like they're suffocating and screaming. It's kind of a similar sensation to that "static" feeling your foot gets when it falls asleep and you dare stand on it (not the prickling part, the part that feels god awful) but all throughout my body.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/IwontGiveUpHope on 2025-01-20 19:49:36+00:00.

Im completely bedbound. I cant tolerate any stimulation. Can basically use my phone for like 10-15 minutes a day.

I dont tolerate most medications. I cant take benzos due to protracted withdrawal.

I have an upper molar that broke years ago. Its rooted into my sinus cavity. When i was still able to leave home, right before my huge crash that left me bedbound now for 14+ months, i was able to extract another molar, but dentist said this molar is too risky and i need to see a surgeon.

Since then the tooth has become infected 3x needing antibiotics causing reactions and worsening to said antibiotics.

So im either going to die going to the dentist, or die with an infection or adverse reaction to antibiotics.

How do ya'll do it that cant leave your bed?

Im afraid

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Flashy_Shake_29 on 2025-01-20 13:10:44+00:00.

I’ve been resting aggressively for weeks and this just keeps getting worse. What do I do! Even just opening my eyes I feel like I’m going to pass out.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/kebabbles92 on 2025-01-20 20:09:31+00:00.

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/sexloveandcheese on 2025-01-20 19:24:23+00:00.

I did about 45 minutes of laundry - sorting, loading, folding, putting away - and tidying up at my girlfriend's house. I was soooo happy. I can't describe how good it feels to just do some chores 🥹 People take it for granted / obviously don't always wanna do chores but WOW, I missed it. I'm so happy to do just a tiny bit to help her, since she's helped me so so much.

It took me 1 pace points in visible (I get 7 per day), and now I'm going to take a nap. My tolerance has been increasing lately. I know I still need to be really careful with my pacing. But it felt good how okay it was - a month ago I wouldn't have been able to do any of that. Hopefully I keep feeling okay :)