#chronic fatigue syndrome symptoms

[69yard]

Chronic fatigue syndrome (CFS): Causes, Symptoms and Treatment

Chronic fatigue syndrome (CFS) Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex and debilitating condition characterized by extreme fatigue that does not improve with rest and is not caused by any underlying medical condition. The exact cause of CFS/ME is still not fully understood, and there is no specific diagnostic test for the condition. Symptoms of…

[chronically-doing-alright]

Imagine having joint pain, stomach pain, headaches, sinus pressure, chills, heat flashes, fatigue, weakness, dizziness, shortness of breath, and heart palpitations all because the clouds might need to piss a week from now.

[enbycrip]

I don’t think I can really separate out how my autism and my ADHD affect me. The autistic and the ADHD features interact in some ways that are just straight-up unhelpful, and others in ways that are really unhelpful for dealing with a really NTcentric world.

And they then both interact with my physical chronic illnesses too.

I really wish there was more talk about how neurodivergence and chronic illnesses interact and intersect, given how many of us are affected.

Executive dysfunction and chronic fatigue in particular are an *incredibly* destructive combination. Particularly when you add anxiety to it. The amount my ability to do literally anything just falls over when I don’t have my anti-anxiety medication is almost ridiculous, because anxiety eats executive dysfunction and generates fatigue like a Guinea Pig turns kale into poop. And *then* of course I have an autistic meltdown due to overstimulation and can’t do fucking anything.

This is why I live in fear of my doctor deciding to cut my Venlafaxine dose. It also has the handy effect of raising my blood pressure so the POTS becomes slightly less debilitating.

[swordsonnet]

the most annoying thing about me/cfs is that it's more like 10 different illnesses in a trenchcoat. i'll wake up with a new symptom and be like "oh okay, guess that's what we're doing today"

[wobblefloss]

STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...

It's not always obvious what's wrong.

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Hi, Doctor. I'm tired. Like, all the time.

No. All the time. I wake up exhausted. I fall asleep at work. I fall asleep in the shower. I'm scared to drive.

No, Doctor. You don't understand. I'm not 'sleepy.' Not 'drowsy.' I'm tired in my bones. My blood feels heavy. The weight of my head hurts my neck. I can't think sometimes--I forget how to read--i get lost in familiar places! I say 'tired,' but I mean that 80% of my life, I feel like a sloppy heap of mud splattering and crumbling from too much moving, too much thinking, too much feeling, too much light, too much noise, too much everything. I'm confused and disoriented and like I'm in a terrible dream.

Oh.

That's a symptom of a lot of things?

Anemia. Migraine. Sleep apnea. Vitamin deficiency. Thyroid dysfunctions. Brain diseases. Heart diseases. Neurological disorders. Blood disorders. Autoimmune issues. Depression and other psychiatric conditions. Lifestyle choices: sleep, food, activity level. Environmental factors: mold, pollution, allergies.

There's a lot of testing to rule things out, huh? Could take years? Yes, I know it will be expensive. Yes, I accept that some of the tests will hurt. Yes, I commit to rearranging my eating/sleeping/exercising habits and seeing every recommended specialist.

Doctor, you don't understand. Either we find an answer, no matter how long it takes, or I am trapped outside of the world forever for no reason. Not testing won't make these horrible feelings stop.

Can you imagine feeling this way? Always? During your friends' birthdays? When your boss demands work? When you're home alone in the middle of the night trying to remember how the sink works? During the commute. During the shower. Taking out the trash. Feeding the cats. Staring at your bills. Talking with your family. For years... weddings, funerals, holidays, weekends, 4am, 4pm, when your loved ones need you, during every emergency, while you fail at your job, at your hobbies, at your relationships, at being your basic self?

Fuck, Yes! Doctor! Run! The! Tests! We are burning daylight!! Let's get this ball rolling! Journey of a thousand miles, begins with single step, etc!

I do want to feel better. This is not my imagination. It's not my fault. I am a reliable witness to my own life and I don't care how many tests 'come back normal.' Those must be the wrong tests to find what's haywire. I know something is wrong and even if we can't fix it, I must understand it.

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I'm now in year 7 of trying to improve my situation. I know so much more about my conditions than I did. I am getting help. I still don't have a full picture. I'm still disabled.

But it's not like it was.

Please. Don't give up. Diagnosis can take years. Some people never get a firm answer. Regardless, you will learn ways to cope. You will meet people who help you cope. Don't give up on yourself. You are worth the effort.

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Seems like something we should all know.

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Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.

[papermachedragons]

Chronic illness buddies, ever have one of those days where your body just goes "peace out sucker✌️" for absolutely no reason and you just feel off and bad and a little sick but not with your usual symptoms or reactions to external factors so you're just left there a little off center like,,,,,alright but in a ???? way

[spookietrex]

Me filing for disability again: Hey guys, this time I can't leave my bed and my partner is literally doing everything for me. Like I can't walk more than 100 ft and that's with a mobility aid.

Disability: Prove it.

My therapist: Oh my God they're so miserable. They should NOT be working. Please let them focus on healing themselves because they had such a bad childhood.

My cardiologist: Yeah, that sounds smart. Let's work on managing stress first so we can manage your heart condition.

My neurologist(s): You should definitely not be working while you figure out what's causing these possible seizures.

My PCP: I don't know what they're talking about. They're making it all up. I know I diagnosed you with that heart condition, and that debilitating chronic illness (EDS) and fibromyalgia but NOW I'm going to edit your chart to make it look like you're making shit up. Hahaha you've never been diagnosed with PTSD! What are you talking about? I saw you walk once 8 months ago. You can totally walk without mobility aids now.

Disability: Clearly you just have anxiety and depression and are trying to get out of working.

[chronicallydragons]

migraine cravings be like "I know we're super nauseous right now. I know it's 10pm. But if we don't go make some French Toast immediately, we're going to die"

[dapperenby13]

For the last week my symptoms have tremendously calmed down, and it’s fucking TERRIFYING.

Like I can go to multiple stores and not crash, I still have some symptoms but they’re not as bad and at different times than normal.

Like we started trying a few new things and that’s probably causing it. But I hate it.

It feels like my pain and suffering is invalid, like I was making it up. And I know that’s not true, I know this is probably just a fluke or something. But it’s scary.

I don’t know how to process any of this.

Has something like this happened to anyone else? I’m really freaking out

[kuraikon]

I'm so unsure of what to do. The clinic I'm going to to get stationary treatment finally called. I'm happy but also really overwhelmed, I don't know what to expect and I just hate that in general. So maybe here are some of you who can relate or even help und write about there first days.

But there is also another thing on my mind, now that I've got my ADHD diagnosis. I also think that I've might have autism too, I have a whole word document full of tests that I've made and symptoms I've collected over years of researching. Now I'm thinking maybe when the vibe is right with my therapist there I could talk to him about it and even get a diagnosis. But imposter syndrome is kicking. Did some of you experienced something like that and could give an advice? I'm just so overwhelmed and unsure of what I should do and I like to be prepared...

[liquidstar]

maaannnn The Fatigue has been so bad lately i just want this day to be over so i can sleep. theres literally not anything else i could do... but i have to wait...

[tele-mesmerism]

when i got my diagnoses the cfs dx felt so secondary and less of a big deal than fibro but i wish theyd put emphasis on how much you can destroy your body permanently. but ofc they wouldnt have said that bc they were still teaching GET at the time, they were recommending treatment that wouldve damaged my body so much

[paintedfaebles]

this is how i tracked my pain, mood, and fatigue symptoms in 2022

i printed them out and put them on my wall this morning, and started a new file for 2023. it feels relieving to see something beautiful come out of it all.

[iplaywithstring]

So, I might be "in remission" with my ME/CFS.

it's in quotes because I don't actually know the criteria and I haven't talked to my doctor about it.

I had remission before - right after I was diagnosed in 2010, I started feeling better. Better as in I had been sleeping/resting/not active for about 18 hrs a day and then over the period of about two weeks I felt better and told my doctor my symptoms were gone. I was warned it could come back at any time, but I didn't listen. I did more and more and within a year I had taken up power lifting (2011). Shortly after that (fall 2012) I got a part time job. Within a few months (summer 2013) symptoms came back, I had to quit my job, and things got progressively worse.

There have been times since 2013 that I have been housebound. There have been times when I had about 4-6 "active" hours a day (where "active" meant anything from being on my feet to just being upright). After starting treatment for endometriosis I went through the diagnostic process a second time with the same results in 2017. I was prescribed stimulants to take as-needed on days when I needed to function in 2018.

Since 2019, I have been getting better at pacing - understanding my limits, not pushing myself, and actually resting. Early 2020, my husband went to Europe for 5 weeks, and I managed to take care of myself and my kids and the house without crashing (and did volunteer work!). When things shut down, I was able to sleep, rest, and be active according to how I felt instead of basing my activity on outside pressures. I really learned what pacing was and where my limits were.

in the fall of 2021 I went back to school - two days a week on site and two days a week online classes from home. Aside from a few bad days and not really leaving the house on the weekends, I managed without crashing. I started my full time on the job training three weeks ago (although full disclosure - I haven't actually worked full time - I've been sent home early at least once a week (because not all clients are comfortable having a student sit in on meetings) so it's not quite full time, but a lot more activity than I have been doing).

I'm waiting for the crash, but it hasn't happened. My husband reminds me that I'm not doing anything in the evenings - couch lump most of the time - but I am still doing a lot. Twice this week I was close to 10k steps, and I wake up the next day expecting to feel awful and I.....don't. My mind is working, my muscles and joints are....well, ok, they're sore, but OTC meds are taking care of it. My digestive system is working (this is a big deal!). I haven't had insomnia or other sleep difficulties. I haven't had random nausea or dizzyness or inability to function.

A friend of mine has reminded me that I'm likely riding on a lot of adrenaline, and she's not wrong, but I would expect the weekends to be bad if that was what was keeping me going. Instead, I'm...fine? Like today is Saturday and I woke up on my own around 8 and instead of napping in the afternoon I went for a 3k walk (slowly, on flat ground) - this is after doing some cleaning. And then I spent the rest of the day mostly sitting/reclining and feeling pretty tired. But just tired, not ill, not sensitive to sound, not having temperature regulation problems, just sitting on the couch relaxing (ok, under a blanket, but still, no chills or blue lips).

So now I'm wondering if I've actually just been faking for the past 10 years or if I was actually just lazy and wasting my life, or if I'm going to wake up one day and just be a mess. This is really happy and exciting news, but I feel really......insecure? about the whole thing. Last time I had a remission I went to therapy because it brought up a ton of things I had to work through - identity issues, who I am, what I want, etc. - and in the end it was positive but it was definitely a crisis point.

I want to believe that I am just understanding my limits and somehow not going past my ability, but it's really hard not to bounce back and forth between "oh no when am I going to crash" and "obviously I'm a fraud". It's been a trip, folks.

[lil-gremlin-gal]

NaClYoHo Days 23 & 24

Day 23

usual daily dishes

second doctors appointment this week

sent trial return to work forms to doctor for signing/review

called sister to check in

put in an order to take advantage of the ordinary's slowvember sale

updated Christmas shopping/budget list

Today (day 24)

usual daily dishes, laundry

threw away some expired food

threw away dead table flowers

wiped bathroom counter

moved meat from freezer to fridge so I can try to cook dinner tomorrow

I haven't felt too much more sucky than normal the last couple days, but in addition to thyroid problems and whatever undiagnosed dysautonomic problem I'm having, I also have you-feel-shitty-disease (ME/CFS), so my normal "feeling normal" is already pretty sucky. If you feel 100% normally and drop to 30%, you feel it! But if you feel 35% normally and drop to 30%, maybe it doesn't impact you as much? idk

Did lots of sleeping and resting yesterday and today, and will hopefully perk up back to normal next week to finish the month strong.

[yepitspain]

well since my doctor refuse to do anything about my symptoms except ordering the same bloodworks that come back as fine each time(he literally told me he won't do anything else 😃), here's my main symptoms right now (which are what i talked to him about exactly)

Chronic Pain

1 to 3 on the Pain scale(of 10) at the very least each day

If i have work, i finish the day most of the time at 7 or 8 on the scale

This pain bc of work is mostly from the lower back to my feet

This pain includes the one in hips and lower back and is often so bad that it provokes an urgent need to go to the toilet where i will have diahrrea

The pain is often so bad that I need to do breathing work to try and calm myself and i have difficulty continuing to work.

This pain causes me a lot of stress before and during work.

I also have a lot of pain in my hand, wrist and fingers which is exercebated by work

I have chronic pain everywhere (each joints), but those talked about before are the most present.

My ankles (especially the left one) is really unstable.

Chronic Fatigue

Always tired. Worse because of my job

Sleeps most of the time i'm not working. If i'm not sleeping, I'm at least laying down or sitting.

Neurological Symptoms

Carpal tunnel syndrome in both hands and cubital tunnel syndrome in left hand

It has been around 2 years since the problems started

I'm unable to write or draw for more than a few minutes without feeling some numbness and tingling in my hand.

I'm right handed so it happens mostly in that hand, but my job makes me use my hand a lot so I often get similar symptoms in my left one

Happens a lot when I sleep

I also have weird numbness that travels from my feet to my head and causes a little bit of vertigo after a few hours on my feet. It's a weird feeling and is almost constant when it starts, but there are "shooting" of numbness from time to time that goes a bout of vertigo that is worse.

This one is hard for me to explain...

Menstruations

I haven't had my periods since the start of December, so around 7 or 8 months (this post is made in July) and it's impossible for me to be pregnant

In 2021, I had 6 periods in total.

I have a lot of acne and body hair.

I am overweight.

Jaw

A lot of pain and it worsen when I talk or eat.

My jaw clicks and pops and it seems like everytime I open my mouth wider than needed to talk, it sublux. Aka it pops out of its socket and immediately goes back in.

My mouth opens in a sideway V. So it goes to the right then center itself again.

I can't open my mouth wide.

My jaw will sometimes lock and presumably, the only reason it doesn't stay that way is because my joints, including my jaw, are somewhat hypermobile?

This is all of my main symptoms right now. One thing I didn't mention is my stomach problems that causes me to often go to the toilet with diarrhea.

Some of the illnesses I've considered are fibromyalgia, FND and Multiple Sclerosis. The only one that is apparently dismissed is MS since I did a MRI last year and there wasn't any lesions... (an mri I had to beg my doctor for btw)

I really want to change family doctor(I've wanted for a while), but I don't think there are anyways to do so in Canada/Québec until he retires which will apparently be in 2 years. And then, I will have to wait for years to get a new one and the thought brings me so much anxiety and grief over the fact that I may never know what's wrong with me...

I want help to find ideas of what illness I could have and ways to manage the symptoms at home...

If you live in Canada/Québec, I would also love to get an idea of what to do with this doctor business.

If you can't help, please consider sharing this post 🙏

Thank you so much for reading all of this.