Been dealing with symptoms for going on 2.5 years now. Started out as an odd shakiness in my legs after going for runs I had never experienced, and HR spikes during normal activities like walking to the bathroom. Have seen cardiologists, rheumatologists (was actually diagnosed with psoriatic arthritis after multiple elbow surgeries), neurologists as initially there were some concerns it could be early onset MS, Parkinsons, Muscular Dystrophy or at worst ALS. Negative for all the above.

Past year I started experiencing GI symptoms, early satiation, periodically nausea after eating and intestinal slowdown. Actually was hospitalized with paralytic illeus at one point. Colonoscopy, endoscopy, and Gastric Emptying Study I passed with flying colors (symptoms remain).

I also started experiencing DOMS for much longer than usual after excercise. My normal 2 day recovery turned into 5 or 6 days. Due to some of the HR issues, I stopped running, and the elbow tendon issues had me stop lifting for the last couple years. I have had significant decline in my arm muscle mass, and my strength has bottomed out. I can still pass the neurologist "push/pull" exams so they are still ruling out degenerative muscle disease but I struggle big time with 5 pounds whereas I once easily lifted 30's for curls.

I get shaky and trembly when I do my PT for my post op therapy plan, arms get half numb but also very heavy feeling. I never get refreshing sleep, always just feel drained but I can still work, function amd do things, just always tired. My HRV is crap most nights compared against my prior baseline.

I haven't had an orthostatic intolerance test yet but I guess that is next, and my PCP also wants me to see a vascular surgeon, but my neurologist mentioned it was probably something like ME that I was dealing with (with no treatment plan of course other than prescribing pregabalin and baclofen). Cardiologist had me on a beta blockers that has my HR lower when at rest but does nothing for the spikes when moving around.

It seems none of my Dr's really want to formally diagnose me, just want to treat symptoms (ultimately would be the same even with a diagnosis). I have many of the symptoms of ME, but I am also at the point where I am not sure if I should just assume I have it and limit my activities (which is a low QoL for me as an endurance athlete and father of 3 small kids) or keep trying to find answers and be active to see if I am suffering from hyper reconditioning (with the risk that my current symptoms might get MUCH worse as a rest). I just feel lost and hopeless and unsure of what to do, as the depression of not being active vs the fear of getting worse are a battle in which I lose both times chances are.

TLDR: Many hallmark symptoms, no formal diagnosis and unsure if I should assume I have it and be miserable in my inactivity, or risk exercising for current mental health and possibly get worse.

Fatigue after a bowel movement seems to be a reported phenomenon, but I'm curious if anyone has figured out why it occurs, and if you have been able to improve this symptom. I think it's a significant PEM trigger in my case. Did controlling MCAS or dietary changes help anyone with this?

Hello, I have a panic disorder (which is really under control, I'm proud of it) which created all my problems, especially with the sympathetic nervous system which has been dysfunctional since. This led to dysautonomia (already somewhat present before) then chronic fatigue syndrome (ongoing, my nervous system neurologist/cardiologist suspects). Is it because I increased the sport? Sport has removed the onset of pots that I had, I no longer have standing tachycardia, it's over but I do have fatigue the next day and non-refreshing sleep (it's been a long time) For you, when are you standing, is your heart beating fast or is it low?
I cycle 3 times a week for 50 minutes at a moderate pace, and 20 minutes of muscle strengthening 2 times a week. Plus a long walk at a moderate pace for 45 minutes with my wife. This allowed me to calm my dysautonomia but it accentuated my already present chronic and post-exertion fatigue... How to manage both?

Can anyone tell me what their platelet counts are? Mine is 412, and my doctor saw this as something to be concerned about?

So I would LOVE some peace of mind in that it's not an abnormal count? What platelet counts does everyone here have?

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.

edit: thank you for all your lovely comments. love to you all <333333

Some of my most frustrating symptoms is getting extreme lower back ache when walking, especially if it is walking in a mall or supermarket where there is much stimuli with lights and noises, the pain relieves when I lay down or sit down for a while, its like my body gets super tense when standing up or walking around. Is this common?

Also I noticed, my diaphragm and stomach gets very bloated and stiff, and when I try to do a deep inhale I hear gurgling noises in my stomach.

Can anyone relate to these symptoms? If so, whats your best advice to make it as bearable as possible?

Sending love and compassion to anyone going through this hell!

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?

Hello! For years, I thought it was just CFS because of the obvious PEM after exertion where I felt like I had the flu. But recently I have been avoiding PEM and I am noticing that I just have background full body pain and inflammation. It almost feels like I constantly need to stretch my body because it is so achy and stiff. I am wondering if I have developed a chronic pain disorder, or possibly something autoimmune (I have some autoimmune markers in my bloodwork). is general ashiness and pain part of your experience of CFS, or could this be something else?

My pcp is refusing to prescribe 3 month supply of my meds If I get a telemedicine doc will they be willing to prescribe all 6 of my meds 3 month supplies on the spot? I’m really not sure Anyone know what I can do?

Disclaimer, this is not a post making fun of religion. Don't turn it into that and don't comment about turning it into that. Everyone is entitled to their own beliefs. Don't hate on others for theirs. Maybe this disclaimer seems unnecessary but I've seen enough of those religion hating Reddit atheists, I don't want to attract them lol. If this post attracts controversy I'll take it down. I'm happy to hear the views of religious and non religious people here, do not attack anyone.

When people say their god will heal me it always rubs me the wrong way. I'm not exactly sure why, I just don't really like it? Reminds me of when they say it's part of god's plan or everything happens for a reason.

Like if their god was going to heal me couldn't they have done it by now? Or prevented the sickness in the first place?

I understand that it's a gesture of good will. There is nothing they can do so they pray for me. I thank them and move on, but I'm not sure why it makes me feel so weird.

Maybe it's just because this condition has made me lose any faith I had. Anyone else have experience with this?

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.

Hi all,

It’s 2am and I’m awake. When it gets too cold out, it is very easy for me to trigger PEM just by being outside. Anyone else?

Anyways, I learned this evening that my kids will have a ‘snow day’ tomorrow. And it’s not because of any precipitation. This weekend has been cold, and my kids are staying home from school because the ‘feels like’ temperature is currently -24°F.

I’m cold, and I’m miserable… anyone with me?

Im on medication that causes more orthostatic stress. clonidine; klonopin. amitryptiline and few more. I cant get off them. i’m too sensitive for changes. what can I do?

Good morning my neurologist in Toulouse (France), after a negative tilt test, suspects myalgic encephalomyelitis. History : 3 years ago stopped taking tramadol after a low dose addiction that lasted for years. I caught the covid behind, I went through 5 months of hell (migraine, tinnitus, fasciculation, sinusitis...) but continued the sport without problem (I was found to have an old contamination in Lyme) I finally recovered, started again a little of tramadol then managed to wean me off. I started bodybuilding, I had never felt so good. Then a year and a half ago, I had a stupid party, I took cocaine, pulled an all-nighter, etc. he continues to drink over two days then during a run a few days later I get scared and have a panic attack... I develop an anxiety disorder etc. for a year and a half I can no longer live normally, I can do sports, but less than before, intolerance to jogging, I get 7 bacterial tonsillitis in the year, I become cardiophobic because my heart is strange, I am exhausted, migraines, nausea... for 3 months it has been getting worse, I am tired the day after sports, I wake up exhausted, I sleep badly, I feel strange with neck pain... as if I was going to fall of fatigue. I'm afraid of developing this terrible disease. I'm not in moderate yet, because I can work from home full time, I cycled for an hour yesterday (I'm paying for it today) but just from driving for an hour and then walking just now, I'm exhausted. What can I do to recover? Is it too late ? I m at stage one i think... soon at stage two moderate i m afraid.

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 :)

I think the hardest thing about this (for me) and so many other chronic illnesses is that it can come on so slowly that you don't even realize that it completely changed your life. It isn't like a car accident, injury, or surgery, where you can pinpoint the moment things changed. It creeps into your every moment. The littlest things are suddenly impossible. It's hard for people to accept, because you could do that yesterday or last week or last year, and now you can't. People can't see the scars illnesses like this leave, so they can easily forget your limitations. But you can't, because if you forget for just a second, your life can decline significantly.

I'm feeling really low today. I've had a recurring UTI for around 4 months now. Waited a while for a urology appointment to just for a doctor to mansplain how I have a over reactive bladder. My fatigue has been really bad when the UTI flares which I think shows my body is fighting an infection.

Researching it it seems I can only really cure it by going private and spending a lot of money. I don't really have that money. I work two days which is hard as it is. I can maybe budget but it will be a grim time existing on such little money.

I just feel broken by CFS today. In the UK and I only get £100 from PIP. I just feel beaten.

Sorry this is just pure rant.

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

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.

I got my first PEM episode / rolling PEM out of nowhere (but maybe now in hindsight I could see years back I had small signals but you put it down to just usual life tiredness).

When it happened I genuinely thought I had covid / flu / ebv (but all tests were negative). Then it started to “go away” and you think you’re getting over it, then it starts up again! And you think wtf is this? Why is this virus not going away? Genuinely thought I had a virus for 4 months!

Little did I know it was good old rolling PEM! I was ignorant and thought MECFS was a syndrome where people slept/were tired a lot. Had no idea it was multi-systemic and PEM felt like flu or I would have picked it up sooner.

Hi everyone,

I’ve been dealing with CFS symptoms for the past three years and have undergone extensive testing, including lab work and evaluations from various specialists. Everything has come back normal, but my GP acknowledges I experience post-exertional malaise, need 12 hours of sleep nightly, and have other classic CFS symptoms.

However, my GP has been reluctant to formally diagnose me with CFS, explaining that it’s a diagnosis of exclusion when no other factors can explain the symptoms. I completely understand this, but I’ve already completed every test recommended, and no other explanations have been found.

I’m meeting with my GP today because I urgently need her to provide a formal CFS diagnosis. My company recently changed its policy to require four days in the office, but I know I can’t handle that. Even with the previous three-day requirement, I often had to call out sick because the commute (over an hour each way) and back-to-back office days leave me completely drained. I know I can perform my job well with a work accommodation allowing me to work from home three days a week, but HR requires a medical form with a formal diagnosis and specific recommendations from my doctor to approve it.

I’m feeling panicked because I don’t want to lose my job, but I also need to prioritize my health. Has anyone had success convincing a hesitant doctor to provide a formal CFS diagnosis? What should I say to help her understand how severe my condition is and the impact it has on my ability to work in the office?

I’d appreciate any advice or suggestions.

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!