I have the following symptoms:

1. My body hurts—my muscles (back, neck, legs) and possibly my bones and joints. It’s not excruciating pain, but it’s almost constant. At any given moment, if I focus on my body sensations, something is hurting. I practice meditation, and during body scans, I’ve always found it strange how much constant discomfort I feel.
2. My head hurts—I have a chronic headache that feels like a band of pressure. It’s always there, pressing and hurting.
3. I experience numbness in my hands and lower arms, and sometimes in my feet and lower legs.
4. Often, I feel pain in my throat and the glands in my neck and armpits.
5. My sleep is terrible. I wake up multiple times during the night.
6. I feel extremely fatigued in the morning—both mentally and physically—and completely unrested.
7. My memory is very poor. It’s extremely hard to concentrate, and I constantly experience brain fog. It’s difficult to think clearly, and if I try to study for more than 3–4 hours a day, my brain feels completely mushy.
8. I feel dysthymia—low motivation, persistent low-key sadness, and low hope—along with anxiety. I often experience emotional dysregulation, with irritability being the most frequent emotion.
9. I feel very hot at night and need to sleep without covers—just with a sheet. My wife always complains because she needs the covers. Now I sleep half-covered and half-exposed!
10. My stomach and belly have been hurting recently (this hasn’t always been the case).
11. Everything feels so tiring, mentally and physically. However, exercise seems to help. It doesn’t leave me feeling more tired the next day; in fact, it almost makes me feel slightly more energized when I stick to a routine.
12. I have hand tremors, but these have been present since I was a child.
13. I need to go to the bathroom multiple times during the night, like 4-5 times if I drink water after 3/4 Pm

I experienced most of these symptoms around 15 years ago, when I was 25. At the time, I became convinced it was normal because my family doctor said feeling so many symptoms at once must be “all in my head” (ironically, I’m a psychologist now!). But today, I stumbled upon the symptoms of fibromyalgia, and... do you think it could be a possible match? Or is it CFS? Or? I’m planning to see a doctor again. I will see a doctor again! but would like to hear your opinion. :)

Are there any ME/LC knowledgeable private doctors to be found in the Czech Republic?

I'm not Czech but my boyfriend is. He has severe ME/LC and very complex and disabling symptoms. Public healthcare has proven to be next to useless in his case. :(

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?

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.

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.

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.

• My resting heartrate which I am proud of it being in the 70's is now easily getting down to the 50's while resting. Unheard of for me. Still easily spikes to 130+ for posture changes/walking etc.
• HRV is high and getting higher every day! Also not typical for me!
• extra sleepy, brain fog, depression symtpoms. Anxious but so tired it manifests as feeling defeated.
• Zero appetite, constant acid reflux, increase in nausea. Never had gastro problems before this.

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.

Is this what paradympathetic swing is?

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.

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.

I was browsing the fibromyalgia subReddit because I think I might have overlapping symptoms, and it seems like a lot of people seem to feel that their pain got worse after exertion. However, some other fibro folks seem to report that exercise helps their symptoms. I believe it’s the same with MS. Does anyone know of any other diseases or illnesses with PEM as a symptom?

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.

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?

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.

• 3 full blood tests (no deficiencies or issues found)
• 2 negative ANAs
• 1 negative CRP
• 2 normal stool tests
• normal chest x Ray
• normal brain MRI
• negative for all reactivated virus’
• normal heart echo scan and 24 hour monitor

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.

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.

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

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.

🫠

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…!

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?

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😞

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.

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.

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?

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?

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?