Has anyone had experiences with prolonged flaccid paralysis after a crash (like full body rag doll, complete immobility)? How long did it last? What lifted you out of it?

I’m about 3 years into my CFS diagnosis and I’ve steadily improved from bedbound to mild maybe very mild. I’m a male in my 40’s. I wanted to share my story.

Symptoms:

I got sick after a series of viral illnesses. I was severe and bedbound for the first 6 months, housebound for 18 months and now mild fr about 9 months. I had PEM, fatigue, GI issues, sleep issues, headaches and POTS. I had little to no brain fog even at my worst. Life has improved so much since becoming mild. I still can’t do many things a healthy person can do, but I have a little quality of life finally.

What worked:

1. Early diagnosis - unlike most people’s experiences, I was diagnosed within 3 months of my symptoms starting. My doctors were aware of ME/CFS due to the attention brought on my Long COVID. My doctors mentioned they’d heard of the condition and diagnosed me, but there was little they knew about or could do in terms of treatment. I know most people here have different experiences with docs but mine have been mostly amazing (with one or two exceptions).

2. Pacing - With an early diagnosis, I Was able to find information on my own about what worked. I will forever be grateful to people in the community who preached pacing because I am confident that my improvement is almost all due to early and quick implementation of pacing.

With pacing, my goal was to leave enough spoons in the day to be dedicated to improving. I find that leaving a spoon surplus day in and day out helps your baseline improve after stringing together many consecutive weeks.

I’m also fortunate to be in a position where I can rigorously pace. I have a supportive family. Before I got sick I also worked myself to the bone but the benefit of that was that I had enough saved up to be financially stable which allowed me to pace and rest.

3. Sleep meds - It helps me get the sleep I need.

What may have worked but hard to tell:

1. LDN - initially helped me for headaches. I have since stopped and notice no difference on and off it.

2. Once mild, I’m actually exercising a tiny bit and finding that it is actually increasing my baseline. The exercise I’m doing is light and slow and well within my daily spoon allotment. I also increase very slowly and very small increments. I think exercise was totally inappropriate when I was severe or moderate. But exercising within my baseline is helpful when I’m mild. I sleep better and have less fatigue.

What didn’t work:

1. Supplements - NAC, Acetyl L Carnitine, COQ10, probiotics, Vitamin D, Omega 3, Quercetin, and maybe a handful of others. Just gave me GI issues and had no effect on my symptoms.

2. Therapy - it helped deal with the anxiety related to my illness (I found a great therapist by searching for ones who specialize in chronic illness and had one herself). But it didn’t help my actual symptoms.

I will cherish my progress and try to not push myself. I think I will always have CFS. But my quality of life has improved enough to where I feel like I can have some joy here and there and that’s big for me.

I hope great things for everyone’s journey.

Has anyone tried it and found it didn't help?

I only managed for a few days, and it felt like I hadn't slept at all.

I normally sleep mostly through the night and can get to sleep easily, it's just bad quality. After taking this though it was so much worse and I was groggy all day.

I'm not sure if I should try again or not. Does it take time for the effects to work properly?

Hello. Im thinking about going on vacation, but im a bit worried about the travel part.. has anyone done any long, or short traveling while having ME/CFS? More specifically by plane/air travel? If so, how was it? Any tips? Any stories? i just want to hear other peoples insights.

I haven’t been outside my country since around 2018 or 2019. I just want, or need a vacation, a place I can enjoy, fully relax, and just experience something new, maybe..

I am 18, and I live in Norway. Right now, my cfs/me is “mild”, I think...?

My idea and/or thoughts.

I have thought about going to South Korea (maybe with my older brother), since I find their culture very interesting, ive also been learning their language for a little while, so I thought that would be fun. However, the travel from Norway to S. Korea would be at least 20 hours. (going from the capital, Oslo, then having a layover (I think that’s what its called) somewhere else, then from that place to S. Korea.) So, doing some research, with arriving at the airport a few hours before my flight, it would take me at minimum around 20 hours before I would be in S. Korea! This is quite a long time.. so I am a bit worried that it might “exhausted” me.

If I took this trip, it would be in June, a week before the summer break official starts. I thought this would be a perfect year/time, because my exams start earlier than usually this year. Which means I would be able to leave/go a little bit earlier. As in before the summer actually starts. (so maybe there would be a tiny bit less people/other tourist?)

But besides the air travel, and getting very tried, I also have some other worries, for example about the heat? Doing some research, Korea can be quite warm and humid during the summer. So im wondering if the heat or new climate would be too much for me? In addition to my other CFS/ME symptoms..

My main symptoms are that im very tired.. I sleep a lot, and I need a lot of rest. I am also very thirsty, I drink a lot of water (I made a previous post about that), and I’ve noticed I sweat a lot more now..? even with barely doing “big” activities, its very annoying... Oh, and I also have sleep problems, I have had those for a little over two year now. I take melatonin every night before I go to sleep, but still. (so because of the sleep problems, perhaps its would also be hard going to a country with an 8 other difference?).

Also, I thought about just booking a shorter trip, with a shorter plane ride to just test out how I feel. For example from where I live, to maybe Belgium, or a bit further, like for example to Spain. But im not sure.. I have also thought about just dropping the S. Korea trip for now, and go somewhere else instead (in Europe), since the trip/travel/flights would be shorter.. but I kind of, really want to go to Korea, and if I don’t go this year, I might not be able to go for another 2 years, depend on my CFS/ME, and just school/exam(s) in general…

Edit: sorry about the long post, if I repeated myself, or for any spelling mistakes.

I've had two bad burnouts in the past 10 years, both lasted me years, both scattered my life all about the place. I've spent far too long in dark rooms and I've had to give up a lot of things I thought were key to my life. It's been rough.

During that time I've learned to improve my nutrition a bunch, (largely with help from a good specialist nutritionalist). I think, other than therapy, and redesigning my life, nutrition was the most important factor to my recovering my energies and health.

I've spent a fortune on remedies/supplements/trying stuff, but a lot of it seemed to do nothing, or make me poop myself. I'm sharing here in hope this'll help one of you.

Here's what I tried, and what worked for me (note, mileage will vary - we all start this pain journey from different nutritional states. I'm not a doctor, and I only pursued most of these under nutritionist supervision - don't take stuff without checking with a pro).

Definitely helped:

• Mitochondrial NRG
• Probiotics - Microbiome formula Mood by Garden of Life
• Rhodiola Rosea
• Vitamin C
• Vitamin D / Vitamin D3 and K2 spray
• Omega 369
• B 12 - B12 sublingual
• B complex - Organic B complex by cytoplan or Vitamin B complex oral spray
• Inulin with FOS powder
• Noni Juice
• Magnesium glycinate
• L-theanine
• Ashwagandha
• Athletic greens / Daily Greens (AG1, and another brand I can't remember)

Somewhat helped:

• 5-htp
• Ginseng
• Ground seeds (flaxseed or mixed)
• Protein powder (I used organic European pea protein)
• Phosphatidyl serine
• Phyto-ADR
• Motherwort
• Vitamin B2 (Ribose)
• Coenzyme Q10

Not sure these did anything for me:

• NADH
• Melatonin
• Iron
• DHEA
• Lysine
• Acetyl L-Carnitine
• Alpha-lipoic acid

Did you try anything not on this list? What worked for you? I'm interested to read about your experiences with different supplements and coming back out of the abyss.

Be well!

Edited to include a summary list of other users suggestions from the comments here, for your ease. These are ones I've not yet tried, but search the comments below if interested:

• Alpha gpc
• Shilajit
• Brahmi
• Citicoline (multiple users suggested)
• L Glutathione
• Resversatrol
• pqq
• Triphala
• tru niagen
• N-acetyl Cysteine (NAC)
• Turmeric/curcumin
• Bromelain
• High dose thiamine (B1)
• Ginkgo biloba
• Vinpocetine
• Oxaloacetate (benaGene)
• Electrolytes & ORS
• Agmatine sulfate
• LDN
• Methylene blue

(Let's do this right: always consult a qualified nutritionist before taking any of these!)

So last night my friend was seemingly ok, they had their biggest crash recently and has been bed bound since we have been feeding them and helping them to the bathroom.

But pain in their legs from their fibro or just from all the laying down was keeping them up all night and multiple bouts of diarrhea so they were unable to sleep, also the term "wired and tired" felt appropriate for them, which is supposedely a phase that takes hold after a crash.

Has anyone heard experienced this in any sort? This is causing them to stress and use too much energy, luckily we have a doctor doing a house visit but it's extremely concerning.

Hi all. The tldr version of the question is in the title. I am a severe/moderate LC/MECFS patient (two years since catching covid), not bedbound in the sense that I can walk to the bathroom and other rooms and be upright for a couple of minutes at a time. But bedbound in the sense that I need to be lying down after a couple of minutes up due to orthostatic intolerance.

I tried sitting upright on a couch the other day for five minutes. At a bit over 2 minutes I started to feel slight discomfort in the chest and lungs area: tension and air hunger. Just to see what would happen I continued up to 5 mins at which point it was getting quite uncomfortable. I laid down and the discomfort resolved in about 20 mins or so.

It just seems so ridiculous and after all this time I still have a hard time understanding the mechanism behind this. I was sitting relaxed, I checked my Garmin watch and my heartrate wasn’t particularly high when sitting upright. Just the position of being seated was enough to make me feel awful.

I know all the basic tricks (salt, fluid, compression) but is there a way to somehow train the underlying issue? Or medicate it? Can I start with adding pillows when laying down to work my way up to a seated position? Has someone managed to do it? Thanks.

And for background info, I am on a betablocker, montelukast and LDN.

I've had functionally zero physical endurance since having Covid in 2022. Even just the amount of walking required for routine grocery shopping leaves me worn out. My family took a Disney trip a few months before I had Covid, and I was on my feet all-day-every-day for over a week; that level of activity is unthinkable to me now. I've also had a persistent cough and random, unexplained bouts of gagging since the Covid. The one thing I'm not having is the muscle pains I'm seeing others describe.

I recently came across some articles on ME/CFS and it sounds very much like what's going on with me. I went to my GP and explained my symptoms, and as expected he didn't mention it as a possibility. I stopped short of mentioning my suspicion of ME/CFS specifically, since saying "I read about this thing online" is the fastest way to get a doctor to ignore what you have to say. He prescribed a vitamin D supplement, suggesting a deficiency could be the cause of the fatigue. Six weeks on it and no real improvement.

The big hurdle I face is that I'm overweight. Definitely not morbidly so, but still beyond what's probably healthy. My concern is that any doctor will just point to my weight and blame that for the fatigue rather than entertaining any other suggestions.

My questions are basically:

1. Can anyone suggest a way to 'nudge' a doctor towards looking into ME/CFS without outright saying it?

2. Failing that, how do I get them to look past my weight and actually take my concerns seriously?

I am in the USA and on Medicaid.

I would like to share some good infographics for my followers on twitter, so if you have any I would be grateful if you send them to me.

I’m just curious, has anyone moved in an area that has more nature, the ocean, cleaner air, lots of trees, etc… and have found relief in their symptoms? I live in the Central Valley of California and the air here is terrible. My husband and I have considered moving to the coast for my health (once we can afford it). I’m just wondering if it would help my CFS? Does anyone have experience with this?

If this is not allowed here, please take it down. I get this isn't a dating sub, but idk where else to go.

26M, white, green eyes, 5'9", athletic, brown hair w/ facial hair.

I have Long-Covid which entails CFS & POTS, but looking back, I had CFS without realizing it since the age of 17. I've been housebound for a little over 2 years now and it's killing my soul. I miss living. I miss working. I miss going to the gym. I miss going to the beach. And I miss female attention. Dating is completely off the table for me because of my POTS symptoms & I have no idea if I'll ever date again, which makes me feel nihilistic beyond comprehension. I guess the point of my post is that I am looking for someone that is in the same situation as me and is in need of connection with the opposite sex, even if it's just online. If anyone is open to adding me on Snapchat, please PM me your username and a pic of yourself! I'd love to get to know you :)

Hi everyone. I (20F) have just recently had two crashes and feel like I’m rounding out. I’m severe and had a craving for penne alla vodka so I ate a large portion and my heart rates been up for 4 hours. Is it likely I’m gonna crash again from this? I don’t know if I can take another one

Edit: woke up feeling like i was hit by a piano, but took a benzo and i’m feeling a bit better. thanks for all your help! i’m super new to this (been symptomatic for about a month and a half) so i may ask silly questions but i appreciate everyone’s support and advice

I was told by the office staff that they require patients to visit in person 2-3 times per year. I am considering calling back and requesting an exception, due to my wife's severe symptoms. Has anyone else managed to get telehealth-only treatment w/ them? If so, how did you do it?

Thanks in advance.

Sorry for the long text. I don't have an official diagnosis, but it's very likely that I have cfs, specially because of PEM (it could be something extremely similar to PEM but it's unlikely) I have gone to uncountable doctors and done even more exams, nothing abnormal, at least that could explain what I feel and felt. I just lost hope that I can actually feel better in the future, not in life itself, but in its quality. Some years ago I was bed-bound, depression and tiredness came together so I couldn't get up and didn't want to. I found a treatment for depression that worked, even if just a little. Some time later I found out I might have asthma, never had any "attack" but lately I had some breathlessness all the time. With medication my exhaustion got better and I was no more bed-bound, but still tired all the time, just able to do things. Now I'm actually working and going to college, that's actually incredible for me because I remember well when I couldn't get out off bed. I know I'm extremely privileged. But everyday I feel my body degrading, my tiredness and breathlessness increasing slightly. I tried just sucking it up, not saying how tired I was or complaining about it very much, but I just can't anymore. I feel like my body is shutting down little by little, muscles getting weaker, breathing getting even harder, almost constant nausea. And I now feel line I have nobody to even vent, I tried to do it with my best friend and that I need an specialist in CFS so I could at least know if it was this because I can't deal with not even knowing for sure he suggested I try other things, including exercise. I've tried to exercise but it didnt do anything good, he and some doctors said it wasnt for enough time. Then I've tried saying that I don't believe I can get better and he just said for me to not talk about is anymore unless I have a development with a doctor or something. Can't talk with my mom because she would worry too much, other friends also don't get it. So I came here, just to complain somewhere, even if no one see or say anything.

Hi all. I'm not sure if I have CFS but I have nearly every symptom ever since I got COVID two years ago. Insomnia, tingling in hands, hot at night, brain fog, headaches, tinnitus, peeing way too much, only retain water if I add salt, and fatigue, of course.

Some days I'm pretty much okay. And other days I'm absolutely horrible. barely have energy to eat or look at my phone.

The interesting thing is even on the horrible days I can force myself to be physically active. It's not pleasant, but I can do it. I cannot, however, force myself to socialize. Talking to people is more draining than walking. I can barely say hello to people. I can't easily form sentences.

It seems odd that interacting with people is so much more draining than going for a walk.

I'm fortunate that if I have CFS it's only mild. It still makes working a full time job unbearable some days.

Anyway, can anyone relate to being more drained by socializing than doing light activity?

Thanks, and I'm glad I found this group. I'm going to a few doctors next month so hopefully I can figure out if this is what I have.

Long story short, approx 45 people were monitored for 12 months. Half had the transplant, half did not. All received Duloxetine. Those that had the Fecal Matter Transplant had pain readings go from 8/10 to 2/10 and fatigue readings go from 85/100 to 20/100. They were still improving after 12 months.

https://youtu.be/8dMXiLTx0nk?si=_97Ftj_SyDnSZeJq

So we know this is hard as it is. My question is do you guys go to therapy because of cfs? I feel like I need to as it’s gotten me really down again and I have worries about future ect. But my main question is just do you go to therapy to talk about your illness of cfs/fybro only and nothing else?

Also has it helped?

I'm 28 years old, and have been chronically exhausted for about 8 years now. It seems that my condition is related to years and years of narcissistic abuse because as soon as I got away from my scary ass adoptive parents, chronic fatigue and complex post traumatic stress set in. I developed depression and anxiety years before these added issues. I now have chronic pain as well. I will wake up in the morning completely exhausted and unrefreshed. This will continue all throughout the day and is exacerbated by physical exertion, lasting until the evening where my energy will finally pick up. I'm tired of the same old unproductive cycle that seems to be unending and am debating switching to a nocturnal lifestyle. I don't work or study unfortunately due to all of my health issues and I don't see friends or family often due to them being quite far away and because I self isolate and avoid people a lot. I feel safer, almost relaxed and almost peaceful at night because there are less mofos around. I keep up with most of my friends online. So I don't see any negative changes to switching to staying fully awake at night, only positives aka having energy to do something other than lie zombified in bed, watching videos and desperately trying to stay awake! Should I just go ahead and do it? Thanks for listening 😬

What is the likelihood that my fatigue is the product of an infected cavity? A couple months ago I realized that one of upper molars was damaged, probably from eating something hard, and the inside is all brown. could a tooth extraction make things worse?

I don't know if I have cfs, but I do have chronic fatigue.

I went to see my cardiologist today as a follow-up for my POTS and my heart issues. I brought up to him that I have near constant fatigue, and my mom mentioned how I've had two bouts of mono. We talked and he said that CFS was a possibility, and I think said to see my primary care doctor about it at some point, and to make sure to have regular bloodwork. His advice to me was exercise, mainly walking and swimming to help with the fatigue and my other problems. I'm just not sure exactly where to go from here. Should I go ahead and make an appointment with my primary and ask him to screen me for it? My primary is kind of hard to deal with at times, and he tends to not take my concerns seriously.

So, I know a lot of CFSers suffer from burning in their legs and weakness due to a build up of folic acid (which is apparently the fake, manmade version of Folate).

But what if a test comes back with high, natural folate? Could it be doing the same thing?

I can't find much info on it except that any excess we have is usually peed out.

I had more labs done today and my folate is high enough that it isn't listed except that it's over the max range. I do take a multi-vitamin with it and B12 in it. B12 was in normal range.

So I'm a little confused on what's going on or even what symptoms could be related to it.

Can anyone help me out?

Hello everyone,

I mistakenly deleted my Discord account months ago and lost the link to a highly scientific and research-oriented ME/CFS Discord. I'd describe it as the "Health Rising/Phoenix Rising (Cort Johnson) of Discord." When I search now, I only find a relatively inactive social ME/CFS Discord called 'chronic hangout,' which isn't what I'm looking for. Does anyone know the Discord I'm talking about? I'd really appreciate another link—I've been searching for it forever!

Hi all, posting on behalf of my wife who has been very severe and bed bound the last 5 months. She has started to minimally improve in terms of the amount of stimulation she can handle, but still needs to spend all of her time lying down in the dark.

From time to time she experiences a head pressure, very much like what PWME describe as a sign of PEM, overexertion, or crashing, but without a clear cause or reason. Pressure headaches are something she experiences when an interaction has lasted too long or something has been overstimulating, but there we could know the cause more clearly. These other instances the pressure is reduced if she gets up to go to the bathroom or moves in bed, and we are wondering if it’s related to her neck/head posture.

We have tried a small incline, which has helped reduce it, but don’t want to use it for long since that may also lead to PEM, vertigo, and more headache(!)

Wondering if others have experienced this when bed-bound and what you’ve done when “training” to sit up or improve overall posture when all you can do is lie down. Any suggestions on what we can do to help her be more comfortable? We have tried several pillow types and thickness but this discomfort returns.

Many thanks in advance.

I trailing a 24/hour glucose monitor and all my insomnia is linked to blood sugar drops. Is this common in MECFS or do I have some other f****** disease that they haven't diagnosed me with.

I’ve been severe for a few years and slowly improved my baseline over time. Nowadays I don’t really get pem BUT I’ve become accustomed to never leaving the house or really moving my body much. I just lie in bed or on the sofa watching tv most of the day. Recently I’ve started to go out every now and then on big shopping trips or long drives. I’m way more wiped out than the average person once I get home and maybe the next day too, but it doesn’t trigger PEM.

I’d love to try incorporating light exercise back into my life to lift my mood and hopefully improve my health a little, but I have no idea what I’m doing or what to watch out for.

Any advice?

is there anyone here that takes both? if so how much do you take and is it working for you? and what are you taking it for (specific symptoms of CFS)?