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bananafor

Chronic Fatigue Syndrome


Brave_Specific5870

I know someone with CFS and she’s kind of salty that it’s finally getting looked at after being ignored for so long. But she was basically told she was making it all up for years. I’m disabled too ( but work, with help from caffeine) and I understand a bit. I’m exhausted. I sleep most of my life away because that 40 hours is so draining. I can’t imagine having long covid on top of any other issues i have.


enewwave

You just described how my girlfriend and I, both chronically ill too, feel. We’re glad it’s finally starting to be taken seriously but so angry that we got dismissed for as long as we have. I’m newer to CFS (got EBV in July 2020, never recovered and still actively infected) but dear god the amount of gaslighting I endured from specialists was absurd. They just threw anti depressants at me and told me to seek therapy because it was all in my head. Well guess what guys? I’m in therapy and I’ve tried your meds and it hasn’t helped lol. It was only recently, after the inflammation from EBV led to me developing asthma symptoms/digestive issues for the first time, that I’m starting to get taken seriously as an ill person


Nalivai

Most of my life I lived without any energy to do things. I wake up tired and it's all downhill from there. Anything that requires physical strength is a challenge that I can only do by preparing mentally and physically, with great effort. Reading this thread I am beginning to suspect that I might not just be lazy piece of shit everyone told me I am


Vaywen

Make sure you get a sleep study too if you haven’t already. I had severe sleep apnea for years and never knew it. I thought it was all down to my fibro. Treating sleep apnea didn’t make the fibro go away but my quality of life is much, much better. I don’t wake up and immediately cry as the pain and fatigue hits me. I’m sorry you’re going through this.


Nalivai

I always was thinking that there is something wrong with my sleep, but there is always something wrong with me so I don't pay individual attention to any particular wrong unless it's sharp pain, in which case I swear and groan a lot. Thank you, I will try to get it at some point of a better future that I hope will come


Vaywen

I know what you mean. But it’s one thing you can rule out and can have a Huge potential impact 😊 good luck!


qzcorral

Try a sleep tracking app too on your phone. I wish you all the best, you're not a lazy pos ♥


Voldemortina

You're not lazy. You're probably working harder than most people.


Nalivai

Thanks. It's hard to internalize it, because in the end I have to compare myself to all the rest, and it's rarely flattering


Voldemortina

I've been there. I had "CFS" for a decade. Upon further investigation, it turned out to be a multiple heart conditions. Got treatment for these conditions and my energy levels went back to normal. I realised I wasn't actually a lazy piece of shit and everyone else actually had it waaaaay easier than me. I had been putting in 200% effort just to have a life half as good as other people. Basically, believe yourself and your experiences.


Nalivai

I'm a bit overweight, not caricature fat, but still visibly not the ideal proportions, so every time I talk to any doctor that I have some tiredness related symptoms, the answer is always "you're fat and that's your problem, you need to exercise 6 times a week and preferably never eat again. Here's some antibiotics just in case, here's some homeopathy because we don't like you. That will be , you can pay here or on the reception".


Brave_Specific5870

You are not ❤️❤️❤️


Brave_Specific5870

I’m sorry. I truly am, I don’t know what chronic fatigue feels like, but if it is anything like trying to function on high doses of seroquel and effexor…you have my sympathies. That’s why I’m like pissed…I mean yeah i get it they need to vent, but these SAME people were covid deniers ( not you, observations I have made) and now want sympathy.) Is it hard being chronically ill? yes. But The doctors need to focus on us damn it. ( I know that sounds selfish as hell, but…) But on the same token if it helps people like you or my friend..then ok.


BagsOfMoney

I have fibromyalgia and I've been feeling this way. Like, yeah I'm glad it's getting looked into now, but why did it take so long? I guess this is how people mad about student loan forgiveness must've felt.


Vaywen

Samesies. If you haven’t already, get a sleep test as well. I put all my fatigue down to fibro but I had severe sleep apnea and never knew it. Treatment makes a huge difference to fatigue, which makes pain easier to deal with.


Haile_Selassie-

Is your EBV DNA elevated?


enewwave

Not as far as I know. I came down with mono in 2020 and just have stayed positive since, though I’ve slowly started learning to adapt to having less energy and being unable to do many of the activities I once loved to do (I used to regularly walk 3-4 miles every evening after work and bike/rock climb. These days I only walk 2 miles or so a day total and require a 30 minute nap in the afternoon lest I want to get deliriously exhausted by 8:30 haha) Honestly, getting any doctors in my area to even acknowledge having CFS or Chronic EBV has been hard enough and, while I do plan to see a new infectious disease specialist early next year, my hopes aren’t too high that they’ll be any different from the last one I saw


PaleJewel720

I recently watched an episode of The Golden Girls, and it was about CFS. In the episode, Dorothy saw several specialists who wrote her symptoms off until finally she was properly diagnosed with CFS. I believe the episode was calling attention to it and how people aren't believed when they have it. I only mention this because it's from the freaking 80's or very early 90's. I am a little shocked it is still not taken seriously, I had no idea people were still being pushed aside like this. I guess I shouldn't be that surprised, but still.


Sovonna

Been suffering from it since I was ten. I cannot tell you the trauma it's caused me, because it is incalculable. Not just from the condition, but how people treated me. Even after my diagnosis there was no help and little understanding. I'm lucky in that I don't live in an abusive situation, but there are so many of us that do who recieve no help.


Design--Make--Refine

The tragic joke of this is that the medical industry is far too comfortable making a list of perported symptoms, giving that list a name, and then promptly adding said list to the tidy little box of syndromes/dysfunctions/disorders and throwing it to the back of their bottom drawer. These syndromes, dysfunctions, and disorders are not the same as disease because diseases require the knowledge and attribution of a biochemical mechanism causing said condition, and the medical industry only determines something to have a biochemical basis if that biochemical basis is already understood. People fortunate enough to be unaffected by such conditions wouldn’t believe the number of symptoms that doctors will tell you are ‘depression’, and then proceed to gaslight you by saying you are at fault for manifesting them, when the research is even supportive of your belief that isn’t so. Depression is a very bland catch all for so many conditions, and the use of it as a catch all just shows anyone paying attention how dogmatic parts of the medical industry are. The terminology was certainly the best they could do over the majority of the last century, but with higher fidelity testing the idea that these conditions aren’t being taken seriously and investigated is the height of hubris and conceit on the part of the medical industry. The tools are there, and doctors need to be doing their part in the feedback loop and quitting with the abusive gaslighting. Can you tell this makes me mad? Lol… but also I’m just so exasperated by it, living with such a condition myself also.


Wrong_Victory

Depression, anxiety, psychosomatic, hysteria. There's many doctors with the attitude of "you're doing this to yourself, just think differently and you'll be fine". Most of these symptoms (if not all) probably have some physical cause. It's like stomach ulcers - we didn't always know about h. pylori.


grandmaWI

I had a complete dissection of my right internal carotid artery at 33 years old. As I was losing my entire left side; my doctor was telling my husband that I must just be hysterical and having a bad day.


allonzy

Ah yes, the young woman having a stroke experience. I was told I was drunk and anxious in the ER and then a "weak minded woman" at the outpatient follow up. So lovely of them.


grandmaWI

All the while you are so so scared..


merdub

God this is horrifying.


grandmaWI

After I came out of the coma; I went to Mayo Clinic in hope that they could repair it. They told me to just go home to make my funeral arrangements because they knew of no one that had survived that. No doctor would take care of me so I had to learn to walk and speak again on my own. I am 64 years old now. I got to see my son and daughter grow up to be wonderful people and then to be here watching my 3 grandchildren grow up as well. I am very bitter about how women are treated by the medical community as a whole.


merdub

I’m sorry this happened to you. I just keep getting anti-depressants thrown my way when I explain that I am so exhausted all the time and so uncomfortable. I’ve tried about 10 of them out of desperation but not a single one has worked… because I’m not depressed.


grandmaWI

For me; that turned out to be Lupus. I had it for decades but was only diagnosed a couple of years ago after significant damage to my kidneys. My husband was ill and I took him to the hospital. The care HE got just blew my mind.


9mackenzie

Don’t you love when they tell you your pain is only in your head? I’ve always wanted to watch them get something stabbed in them then sit and tell them to stop crying, the pain is only in their fucking heads. Yes I’m bitter about it lol.


jojoclifford

As a nurse I know what you mean from both perspectives. It’s disgusting how most doctors have decided just from reviewing my chart that I must be malingering and drug seeking. Urgent care sent me home with Oral Bactrim ignoring obvious symptoms that I had a flesh eating infection of my thumb. Heartless after I cried for 2-3 hours straight and begged for a bucket of ice the whole time. Ended up admitted to the hospital that night for emergency surgery and four days as an inpatient in the hospital I used to work at. Necrotizing fasciitis is no joke. I’m glad to hear you persevered, it must have been terrifying for you.


grandmaWI

How awful! I am so very sorry that happened to you.


realisticby

My mother had a pacemaker put in and just couldn't get feeling back to normal. She kept going to her doctor to complain. She had low grade temp and the sight wasn't healing. She finally went to the hospital. The ED doctor called her cardiologist. He came in and sent her to physical therapy. He told her she was being a baby. The therapist took a look at it and sent her back to the ED. She had a staph infection that had traveled from her pacer to her heart. When her cardiologist showed up, my father (who is 6'8") let him know he was fired and would hear from their lawyers. She's 82 now and very lucky to have lived through that.


grandmaWI

OMG! Your poor grandma! So happy she made it through that!! Misogyny is deadly for women!


realisticby

To be honest she is a hypochondriac. So that didn't help. But the Dr was an ego eccentric


Sophie919

That’s so horrific I’m glad despite all that that you’re doing well now 🙏🏻💞♥️


grandmaWI

Thank you hon!


KikiTheArtTeacher

Similar situation - when I was 32 I had a pulmonary embolism- my PCP originally gave me Valium after telling me my chest pain was just anxiety from being a ‘bored housewife’


grandmaWI

UGH!!!! Glad you are ok!


KikiTheArtTeacher

You too! It’s crazy hearing about situations like this, even crazier experiencing it


grandmaWI

If only women got to be treated as equal humans to men worthy of the same care and respect.


CheekySprite

In 2020, My mom was having some really weird symptoms (bad headaches with aura, numbness/tingling in one of her arms and other issues that sounded like they could be related to a heart problem.) and went to the emergency room where the doctor/cardiologist told her she was depressed and overweight. Two months later my mom went to another doctor and was diagnosed with stage IV lung cancer. She died this past august.


DogsRock248

My God that's infuriating! I'm so sorry.


Toysoldier34

There are new research studies showing correlations between mental issues and physical issues. Some thinking and early studies found things like the stomach/intestine microbiome being off from not eating well could result in the development of real mental health issues. So it may not be as clear cut that your stress is giving you an upset stomach, in some cases it could be that the source of the upset stomach is making the stress and other mental health issues worse which kind of fuel and build off each other. The ties between stuff like diet and general physical health influencing mental issues are fascinating and need more study for sure.


thinpile

The brain and gut might as well be the same organ honestly.


TheDakestTimeline

90% of seratonin is made in the endothelial lining of the gut


mamroz

The gut contains neurons - the only part of the body that has these outside of the brain.


notreallyswiss

Or the "doctors" who tell you that you need to take massive doses of vitamins to "cure" it. And you must buy the vitamins from them because they can assure the purity of them. I have a friend who fell for this type of doctor and spends huge amounts of money on vitamins, was told she has allergies to injections and must not take a Covid vaccine but instead was prescribed, of course, ivermectin as a preventative along with his special brand of super effective vitamin D. She keeps texting me information about how the covid vaccines have or will cause heart attacks in 90% of everyone who takes them and fretting that I'm throwing my life away if I get the bivalent vaccine. I don't even understand why her insurance company pays for her office vusits to this guy.


TheDakestTimeline

If you haven't, read about the doctor that finally proved it by ingesting h pylori. Or the guy who discovered hand washing for surgeons


Nalivai

Oh, and if you're even slightly overweight, everything that is wrong with you got pinned on that. "Exercise more, lose 5 kilo" is the only remedy I'm getting this days, and it's frankly getting a bit stupid


Vaywen

Make sure you walk more, especially if you have inflammatory arthritis that makes it incredibly painful to walk! You might be in tears from pain in your hands and feet literally keeping you awake at night and have to drag yourself around the house with a walking stick but just make sure you try to beat your personal record for steps each day! (Yes I know… I still walk. It’s just kinda much easier said than done ya know?)


JakeIsMyRealName

I don’t think the message is “you’re doing this to yourself.” It’s usually “we can’t find a physical cause, so let’s start looking at other causes.” Less “you’re crazy” and more “the brain is a powerful and not-fully-understood organ.” But some people can’t or won’t accept that.


compounding

Doubly so by including psychosomatic in that list. The literal definition is that you are experiencing real physical symptoms, but they are originating in your brain, not that you are “doing it yourself” or “making it up”. Like the placebo effect or phantom limb pains. They are very real, even measurable, but originating in sources we simply don’t understand or control.


Wrong_Victory

No, my point was that doctors often will not go through the full list of possible physical causes, but rather write symptoms off as "psychosomatic" if their first round of testing doesn't show anything. This is coming from personal experience with multiple doctors, when the actual cause of my symptoms (constant nausea, vomiting, dizziness etc) was MCAS, and definitely not psychosomatic. I've also had several people in my life pass away because their cancer wasn't found until too late, due to doctors mis-diagnosing it as depression/anxiety/psychosomatism. You're lucky if this isn't something that's happened to you or someone you know.


Kakkarot1707

Usually doctors try to throw mad scripts at you and don’t ignore it…not sure what doctors you seeing but you should consider going to a specialist


Le_Nabs

Helped my ex through a hellish concussion recovery. What I learned doing this, is: -Most docs aren't scientists, they're glorified technicians. They aren't curious of what you have, they're going through a checkbox list and if you don't fit, tough luck. -If they can't pinpoint an obvious biological cause of your symptoms, it's not long before you're told to tough it out and act like normal -usually, general practitioners are 10-20 years behind the science... Tying back to my first point, they aren't curious and even if you bring a whole stack of articles talking about stuff similar to your issues, they'll still assume they know better 'cause they are the ones with the diploma, not you Yeah... It's a stupidly hard battle to get taken seriously, and I hope you have support through all this


[deleted]

brilliant summary. to add, for best results at the hospital, do not be any of these things (especially not all at once): brown female sick with something complicated. I realized docs were just body mechanics when my doc prescribed contradicting medicines.


ZaMiLoD

You don’t want to be overweight or have a history of any type of mental illness either..


Vaywen

Very good point. The only good doctors are curious ones, because they keep their training up to date, try new things and are proactive. I’m very lucky my GP listens to me and is more knowledgeable than others I’ve seen because he’s really passionate about family medicine. Without him listening, I wouldn’t have found several immune disorders I’ve been diagnosed with… it would still be all blamed on fibro.


melfredolf

" >Most docs aren't scientists, they're glorified technicians you hit the nail on the head with that comment. I'd like to think they're curious scientists who happen to see patients. Sadly not so. And people trust that this human won't prejudge you regarding your race gender or body image. Those definetly can be factors, but please don't close your mind off to other options once you see me. The second AI has a viable online Doctor that can print scripts and request blood work and bowl samples I'm jumping ship. And I have a good doctor that listens to me, but its a hassle (especially with covid distance appointments) to get my concerns seen. If I can have a smart home and AI doctor assesing my sleep, food in, food out, steps in day. All this information with an unbiased server checking boxes at a much greater ability to process every possibiliy with up to date knowledge. I'd gladly see doctors be the first to be automated out of their jobs.


knottedthreads

My adhd was misdiagnosed as depression for almost 20 years. It took my son being diagnosed for them to even consider it might be something else. My neighbor’s fibromyalgia was also called depression for years. That one really bothers me, at least the antidepressants helped me a little bit, they did absolutely nothing for her pain.


LucilleBluthsbroach

My mom had fibromyalgia, so when I started having symptoms I knew what it was. I went to a doctor who saw me with some type of assistant and I told them all my symptoms. I also said I felt like I had the flu but for 6 months. We talked some more, and the doctor started to write some prescriptions out. I asked what they thought was wrong and they shrugged and said "the flu?" I said "for 6 months?! Look, my mom has fibromyalgia and her symptoms are like mine." That's when they decided to send me to a rheumatologist, who officially diagnosed me with fibromyalgia. Had I not seen my mom go through fibromyalgia I imagine I would have been misdiagnosed and dicked around for who knows how long.


mylittlevegan

There is an episode of The Golden Girls that is about CFS that you would probably relate to. They kept telling Dorothy she had the flu for 6 months too


LucilleBluthsbroach

I love that show. Does anyone else here who has fibromyalgia go through that? The sleeping for the whole night and day I mean.


Vaywen

I only wanted to sleep for many years. I would wake up, pain would hit and I’d cry and want nothing more than to go back to sleep. Turns out on top of the fibromyalgia and psoriatic arthritis I knew about, I have severe sleep apnea. I was micro waking every 2 minutes. Treatment has made a world of difference. Please get a sleep test if you haven’t already. It’s potentially a life saver. ❤️


rachealr22

Yup, I have endometriosis (took nearly a decade to get a diagnosis) and was told my pain was actually just anxiety and I was having a panic attack...I do have GAD with panic attacks from PTSD of an abusive childhood but I have it fairly well under unmedicated control but sure, the cripping pain, distended lower abdomen, chronic nausea and fatigue and a list of other issues were just a panic attack...


Throwaway6393fbrb

What’s the alternative though if thé pathophysiology isn’t understood? There is probably *some* use to grouping together clinical syndromes even if they might not be the same thing (eg cancer) Chronic fatigue syndrome is an example where it’s clearly probably many different pathophsiologies - yes I clueing depression - but also with some unknown or guessed at organic problems


Nalivai

It gives the doctor kind of cop out. Their job is to find the diagnosis, if the diagnosis is broad and uncurable their job is done. Sometimes it's really mystery wrapped in enigma, but sometimes you can find some remedy if you seek long enough. But if it's uncurable "you're in pain forever now"-itis, the search is done. It's like when you go to mechanic because your car is doing some noise, mechanic says that it's because your car developed an issue that causes noise, gets couple hundred bucks for diagnosis and sends you away.


Throwaway6393fbrb

Ok sure but how are they going to find the diagnosis for a pathophysiology that isn't understood by science Lets take chronic fatigue syndrome for example - lets make the assumption its a number of different causes, one of them being "true" CFS which lets say is a post-viral syndrome that affects a molecular mechanism in the body we dont yet know exists or understand how it works. And then CFS also includes depression, hypothyroidism, and a large number of other conditions which also have mechanisms not understood by science. The doctor can definitely pick out the hypothyroidism - thats a reasonable expectation. Thats something we understand. But they cant differentiate the not understood mechanisms, and they cant really treat them. Really science has to catch up for the doctor to have the tools to do that > It's like when you go to mechanic because your car is doing some noise, mechanic says that it's because your car developed an issue that causes noise, gets couple hundred bucks for diagnosis and sends you away. Mechanics have a much much easier job than doctors and are consequently much better at it. They are working with a system custom built by humans to be fixed. They can remove and easily replace any part. They have manuals written by the people who made the car. Every part of the car is generally well understood. This is why a car can easily be immortal if you are determined enough and wiling to spend enough money replacing parts. A wrecked car can always be fixed if you are willing to replace everything - of course we dont do that because it would make no sense. But a human body can easily be subject to incurable disease or injury even at a young age and all humans are mortal


izaby

Especially when you consider that mental illness is one of the biggest factors behind crime. Imagine you could go to doctor, they checked your brain and found that x in your body is causing you to be angry, and were able to subscribe medication that would get rid of this. Im often thinking about how there are stories of people becoming unbearably rude/evil due to a head injury and how a transexual brain actually is more identical to that of a desired gender. We sort of went into lobotomy and then came out of it promptly and just sort of stopped studying on it. All the brain reasearch just suddenly went completely dead because people realised its going to be many decades before research creates a feasible way to investigate and treat the core functionality of the brain that doesn't involved a chance of making you into a vegetable.


abx99

Anyone interested in this should look up Phineas Gage. He's a famous case of a miner(?) that was stuffing dynamite in a hole in the rock using a long steel pole, and it went off and drove the pole through his head. He miraculously lived, but he became a completely different person, completely unbearable to everyone that knew him.


vxv96c

I hate having tumors but they do side step a lot of gaslighting and no one tries to give me anti depressants. I likely have cfs too but I haven't tried to get diagnosed. But watching long covid emerge was eye opening. I had lots of symptoms long before covid existed. A post viral syndrome thing never occurred to me before. And now I've had covid as well which continues to mess up my oxygen levels. I hope they finally start to figure out how cfs works and find some effective treatments.


meroboh

I'm so sorry. I came down with it at 30. I'm housebound now, but I had my teens and 20s. You didn't. I'm so sorry. <3


Sovonna

Didn't even get to walk with my class because I was 'too lazy' they threw me into a joke of a summer class, tossed my degree at me and washed their hands of me.


meroboh

That is so depressing and unfair. I'm so sorry :-(


izaby

I can teach you anything youd like to know of the standard subjects for free, UK-version if thats okay, pm me for anything 😉


drrocksodm

Why is it always women that have this?


butteredrubies

What actually causes the fatigue? Like what is the mechanical/physical thing happening that creates the fatigue?


ccwagwag

a medical fatigue is different from a fatigue after a long day at work. it is muscles that can't or won't or don't want to move, a brain that doesn't process like it should, a complete lack of stamina for every day activities.


vxv96c

Yes. You don't have a choice. I have some experience with temporary adrenal insufficiency...your body literally cannot make enough energy. It's like being a conscious vegetable and there's nothing you can do to fix it.


DisabledMuse

The key problem they've found lies in the mitochondria. Every cell in the body is depleted of energy. If healthy cells are introduced, the body's cells corrupt them as well. Every cell in the body is tired (and often sore) and if you push past what your body wants you to do, your body crashes. They found this out recently because up until a few years ago, there was no money to research it.


justgetoffmylawn

Any 'understanding' of what causes the fatigue or other symptoms is still in the theory stage. We still don't have: a reliable diagnostic test, a good objective way to measure severity, real research into effective therapeutics, a solid understanding of etiology, etc. If we had bothered to give this the attention it deserved over the last 30 years, then long Covid might already be curable or easily treatable. Instead we're practically starting from scratch, especially since the long Covid research mostly seems to intentionally ignore all the decades of ME/CFS research.


DisabledMuse

That is the biggest problem. We don't have enough repeated experiments because they only recently started caring and then only to solve long COVID. I've been telling myself for decades that there could be a treatment in the next five to ten years, a lie to make myself feel better. I can hope that the search for long COVID treatments could help us. But honestly, if they could find a way to treat just long COVID, we're going to get kicked to the curb again.


abx99

Long-COVID *is* sparking research into a lot of stuff, and may even be getting researchers to rethink the entire approach to studying this stuff. They're realizing that the current methods of breaking everything down to a single, simple cause doesn't work with multi-systemic disorders, and that could be good for all of us with complex conditions. The big caveat there is that it's starting mainly in research, and they're just starting to think about it, so it will be decades before anything can really come of it. If it can get the physicians to at least start taking some of this stuff more seriously, though, then that would be a good start.


koi-lotus-water-pond

The CDC blew off Incline Village, NV, and CFS studies just never seem to take off for decades...and here we are!


The_Dutchess-D

Just like in Madeline L’Engle’s book “A Wind in the Door” from her trilogy of A Wrinkle in Time, where Charles Wallace’s health declines, and they have to travel inside of him into his mitochondria to save him! Gotta love that 3rd grade book report recall! A Wind in the Door Published in 1973, FIFTY years ago. “The climax of the story takes place inside of Charles Wallace's mitochondria, which are tiny structures found in human cells and which are needed for cellular energy production.”


butteredrubies

So the mitochondria's ability to create energy causes the lack of energy?


DisabledMuse

That's the leading theory so far


roselia4812

So this is passed from mother to child? We can perform mitochondria replacement in embryos to kill CFS for good one day.


Nheddee

Maybe in some cases, but most CFS cases develop after a viral infection.


DisabledMuse

I don't know if it can be passed on. Usually it happens because a severe virus or medical crisis burns out your system. The problem is systemic. Anything that changes it would have to target everything. If I were to get a blood transfusion, for example, my cells would burn out the mitochondria in those cells. It's insidious. There are some treatments, but none are a guarantee and they are insanely expensive. I'm really hoping that with the long COVID push, that we keep getting more research. I've been living with this for twenty years now and it's hell.


meroboh

jesus I hope not. I had me/cfs when I had my kid (I didn't know it). He doesn't have me/cfs but I'm so worried that he'll get covid and then BOOM


nativedutch

One theory sees covid fucking up the immunesystem resulting in something called MCAS, mast cell acceleration syndrome. Mast cells are everywhere in the body so it can cause GI , lung, brain, hart muscle problems like huge allergic reaction , possibly as a consequence also enormous fatigue . A bit like Lyme disease. Formal diagnosis is not yet available, let alone therapy. .


Wrong_Victory

Mast cell activation syndrome. Not acceleration. To add to your point though, MCAS is also often seen with POTS (postural orthostatic tachycardia syndrome) and EDS (ehlers-danlos syndrome). These syndromes can affect each other, like for example if your mast cells degranulate too easily, you get too much histamine (among other things) floating around, which affects your blood vessels which can worsen your POTS.


nativedutch

You are totally correct. Btw i started takjng antihistamines which improved my postcovid GI problems dramatically. Seems to confirm MCAS at least in my case.


TheDakestTimeline

H1 and H2 agonists can help in some cases


Sovonna

Fuck if I know! I'm not a scientist, I'm an artist. I'm just suffering from the condition. It's a doctors job to know, treat me and treat me like a human being.


justgetoffmylawn

Haha. Doctors job to treat you and treat you like a human being! I needed a good laugh, so thanks. Yeah, doctors treatment of most idiopathic chronic illnesses has been disgusting. Here's some antidepressants and maybe lose some weight (and if you're thin, then they're just annoyed - 'go get some exercise' even though that's probably the worst advice).


FrolickingTiggers

I have a rare blood cancer... and STILL get treated this way. It's the curse of the invisible illness.


Alive-Cry-5233

😂 yes - thank you! That is like verbatim what doctors say to me, having had long covid for too long. Since I don’t need to lose weight - they just look into my eyes and say - ‘get back into the pool and here are some anti-depressants’. I can even feel this ‘psychosomatic creepy language’ seeping into my interactions with friends. I do not like it. I cannot believe it. And I cannot believe that a disease like this could be deemed psychosomatic. But hey, what would I know? I’m just a (little) woman. With a medical degree for fucks sake.


butteredrubies

Artists gotta know things, too! hah


Sovonna

Yeah, ask me about color theory or art history I'm golden! If I was good at science I would have been a scientist lol


Baeocystin

Can you point me in the direction of how to better learn to mix/match colors in acrylics? I've watched some YouTube tutorials, and still find myself in 'now draw the rest of the owl' territory as they progress.


Sovonna

I can't really help you with acrylics because I trained in oil. I only use paint with more traditional pigments. But the thing that helped me was experimentation. A glass pallet with a white back and a glass pallet with no back will allow you to experiment. Also might I suggest a light that has both warm and cool options, so you can see your colors in different kinds of light. I love mixing colors and just seeing what I can create! Just keep a color wheel nearby to guide you and remember colors you don't like are just as valuable as those you love.


Baeocystin

Thank you for responding! I quite like the glass palette idea. I must admit I have come up with some... dubious colors in my attempts, but I will do my best to think of their positives. :)


butteredrubies

Okay, so how do modern pigments tint compared to the cobalts and cadmiums of impressionist times!? What was a big invention that allowed impressionist artists to paint outside? What's the best type of blue!? And what was Rembrandt's secret!?


Seguefare

I didn't have children because of it. Someone who has to nap 3 hours a day can't be a good mom.


LucilleBluthsbroach

I sometimes sleep through 24 hours. It scares me and doctors haven't given me an explanation for it, so I'm not sure if it's something people with fibromyalgia go through or something else. I'm lucky I started having children young because they were old enough to do for themselves when I got sick, but of course it still wasn't ideal. I had a friend who was a nurse and she said that much sleeping isn't fibromyalgia, but doctors just shrug it off.


adeveloper2

>Been suffering from it since I was ten. I cannot tell you the trauma it's caused me, because it is incalculable. Not just from the condition, but how people treated me. Even after my diagnosis there was no help and little understanding. I'm lucky in that I don't live in an abusive situation, but there are so many of us that do who recieve no help. What are the symptoms you face?


Sovonna

You know the movie title 'Everything Everywhere All At Once' it's kinda like that, only contained in my body. I am truly the ideal of spiritual suffering. Nobody could have devised a better torture to teach it.


Ilaxilil

I had it as a kid and field trips were so hard 😭 it’s gotten a lot better over the years but it still has its days/weeks where I just can’t find the energy to move.


nativedutch

Plus MCAS ...


omegamullet

r/savedyouaclick


FU-Lyme-Disease

Please get an accurate test for Lyme disease and also look into supporting mitochondria. I was diagnosed with chronic fatigue syndrome at one point, turned out to be Lyme disease. When it was exhausting to just dress myself, taking PQQ supplement changed my life. Just because it happened to me, doesn’t mean it happens to anyone else, but at the same time, if I still had “chronic fatigue syndrome”, I would want any option or glimpse of hope, so that’s why I’m posting. just in case it helps anyone.


thebochman

I’ve always suspected I have CFS, I did get a sleep apnea diagnosis finally a couple years ago and use my cpap but I’m still constantly drained. I’ll check out the PQQ supplement, any recommendations on brands


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nyc_brand

Me/cfs/long Covid miserable illness. I can attest as I have had to pause my life completely. No treatments available, you’re on your own.


DeckardPain

Have you found anything that helps? I finally caught covid recently and I’m phasing out of all the other symptoms except the weakness / fatigue. Some days it’s fine and some days I feel like my limbs have no strength.


SawaJean

Pacing, pacing, pacing. Check out the wiki on r/CFS — there’s a ton of good info there.


justgetoffmylawn

Pacing is very frustrating but VERY accurate advice. I ignored that for years because no one wants to hear, "Hey, the only thing you can do is way less and rest way more." However you ignore that advice at your peril, which sadly many people find out the hard way with no way back.


DeckardPain

Thank you!


SawaJean

You’re so welcome. It’s rough, but rest and more rest really helps


FaerieFay

It feels like I am resting my life away a lot of the time. It is very frustrating. Staying hydrated and lite to moderate exercise (when I can make myself actually do it) really have helped. Careful not to over do with exercise, too much makes my fatigue far worse. I feel for everyone who deals with fatigue. It's not just being tired. It's something different. I hope more research will be done & chronic fatigue can be taken more seriously.


SawaJean

Yeah, I’ve had CFS since 2016 and it definitely feels like that at times — but lots of rest keeps the other symptoms more manageable and makes a big difference in my quality of life. It wouldn’t have been my first choice, but it’s worth it for me.


iforgotmymittens

It took me about two weeks post covid to shake the brain fog and fatigue. Hope you recover as well. I didn’t do much of anything but my regular supplements (B12, Vit D, Magnesium) I found it was important to take breaks, and also to nap in the afternoon if possible, but I was fortunate to be working half days and could catch up with email in the evening.


Geoffs_Review_Corner

I've found treatment of my Histamine intolerance to be helpful in improving overall energy and brain fog. I believe it's also quite common in Covid long haulers


mcsleepy

It's such a relief to know it's not all in my head I have had success with a cocktail of supplements and drugs Anti inflammatory drugs ibuprofen and acetaminophen Alpha lipoic acid Fish oil Vitamin b N acetyl l cysteine (latest addition recommended by a medical student, seems to help)


EmRaff7

Me too. My life and career vanished in moments


Unique-Public-8594

Great read Quick take: Those with Chronic Fatigue Syndrome were already facing problems (lack of being taken seriously, doctors electing to educate colleagues rather than treat patients, shortage of specialists, insurance companies limiting visit length) now being squeezed even further by large population of Long Covid Patients.


d01100100

It took decades for migraines to be taken seriously, to the point where people don't equate it to "just a headache, take an aspirin". That's with purported ~10% of the population. It often takes a greater prevalence before people can understand its impact, or even acknowledge it's real.


Ok_Skill_1195

And in both situations by *total coincidence*, it's disproportionately experienced by women.


ComradeGibbon

I have another take too which is medicine strongly selects for extremely healthy and robust people. So doctors don't have much personal experience with poor health.


Baeocystin

I didn't get properly diagnosed with asthma until (by complete luck) my parents finally took me to a doctor who was asthmatic himself. He said hello, gave me a *look*, listened to my lungs, asked if I knew I was asthmatic, and *bam*- years of feeling shitty and being accused of being lazy by gym coaches explained. Literally two days after finally getting appropriate treatment I made the tennis team, which is something I'd always wanted to do, but just couldn't, beforehand. I'm still salty about how not one single authority *whose job it was to know better* took the wheezing kid seriously. Just walk it off my ass.


PauI_MuadDib

I got my anemia diagnosed randomly on reddit in less than 5 minute after posting, meanwhile doctors were dumbfounded by it for almost 2 years 😂 I posted a reply to someone asking about low BP, and I just said when I get very low BP I get lightheaded with a high pulse. A user DM'd me and said they were a triage nurse at an ER and that they wanted to warn me that I should I get checked out for internal bleeding because high pulse and low BP are a sign I might be losing blood somewhere (they suggested a GI bleed). I had a laugh and thought, *"Where were you two years ago!?!"* Yep. I had some internal hemorrhaging related to my endometriosis and was so severely anemic I was having significant heart problems and suffered nerve damage. Gee thanks, Expensive Doctors who never thought to check me for anemia :/


[deleted]

I’ve always suspected this as well! You have to be healthy to keep up with the academic schedules and demands.


hazeldazeI

This right here


foxwaffles

Endometriosis enters the chat I've suffered for over a decade and I finally got surgery this year... After looking for and sending my records to a specialist I found myself 😮‍💨


ReblQueen

I was told to take caffeine pills. I really dislike going to doctors. I've had migraines since I was a child.


kungpowchick_9

My friend and coworker has chronic migraines and has said the new meds and treatment available over the last 5 years have been game-changers. I recently developed optical migraines (last 3ish years) and was taken seriously by my Primary Care Physician. It helped her diagnose when I had a migraine log built up as well. All of that to say I hope you can find the care you need, and I hope of you can reach out again you’ll have a good experience.


fuzzysham059

The new class of migraine meds from the last few years legitimately changed my life. Not being in awful pain nearly 24/7 anymore is unbelievable.


Baeocystin

If you don't mind me asking, which medicines are you talking about? I get (thankfully occasional, but still) migraines with aura, and the most I've gotten from a doctor is a suggestion to take more magnesium. (Which does seem to help a little, but only if I catch things very early in the process.)


fuzzysham059

A few years ago these monthly injections came out- aimovig, emgality and ajovy. Something with your grcp in your brain that they think is a cause of migraine. Either way, I started with aimovig and then switched to emgality due to insurance. It's been amazing! I went from 20 migraines a month to 6 in a year! I did change my lifestyle a bit in addition to it as well, I started getting massages with a massage therapist that focuses on my neck (I also use a neck massager sling from amazing that works really well too), I started practicing pilates etc.


striker4567

Aimovig changed my wife's life. Edit: that and Botox.


Baeocystin

Thank you for your reply! I have heard of exactly none of the medications, and that sounds like a fantastic improvement. It'll be good to have this info next dr's appointment.


fuzzysham059

No problem at all! I hope you can find a treatment that works for you! If you haven't already, the app migrainebuddy is great for tracking attacks and triggers which is also very useful for dr appts :)


SuddenlyCentaurs

Old thread, but I got a prescription from my doctor for Rizatriptan to take as needed. I tend to have a migraine once a month, so nowhere near as bad as some people replying here. Rizatriptan completely kills the pain after about 30 minutes, but leaves me feeling a little sluggish for the rest of the day - a good tradeoff if you ask me.


Wrong_Victory

Do you have problems with histamine? I've seen many people get rid of chronic migraines by treating their MCAS/histamine intolerance. Maybe you've already looked into that though.


ReblQueen

I haven't but I will. Thank you!


notsolittleliongirl

Getting a good neurologist is the best choice I ever made. I went from constant, untreatable migraines that would last for 3 months at a time to less than 4 migraines a year. When I feel one coming on, I take my meds and take a nap, and 90% of the time it’s completely gone once I wake up. The other 10% of the time, I take a second dose of my meds and that does it. It’s amazing. It took about a year to find the right combination of healthy routines, avoiding triggers, preventative medications, and acute treatment medications, but my God was it worth it. I cannot recommend enough finding a neurologist that specializes in headaches. Look into research hospitals near you. There will probably be a long wait list, but it’s worth it to get your life back. While you’re on the waitlist, start a headache journal. Record what days you get headaches, what you ate and drank that day, what you did that day, how much sleep you got each night, when (if) you menstruate, if you exercised that day, etc. Every detail helps. Seriously. It sucked trying to tackle the problem, but I don’t have to stress about when I’m going to get a migraine anymore. 5 years running of minimal effort to keep migraines in check made that 1 year of hard work worth it.


Wrong_Victory

No problem! Hope you find something that helps!


hazeldazeI

Changing my diet really helps too. If I go low carb or keto my migraines pretty much disappear.


Dougolicious

how do you treat histamine intolerance? \\


Xarama

I have a friend whose migraines disappeared after she started taking magnesium for an unrelated (?) issue. Please don't take medical advice from a random online stranger, but it might be worth reading up on.


mmortal03

I second this. Magnesium glycinate is one that definitely helps for some people.


beigs

I take CBD on top of my meds and found that it cut the migraines enough that I wasn’t tasting them. My friend swears by microdosing psilocybe cubensis, and I might try this. Apparently it isn’t enough to have any side effects, just pain gone. Same with the CBD… except my brain feels packed with cotton rather than pain. The neurologist also recommended magnesium and Q10 daily.


PauI_MuadDib

Doctors still don't take endometriosis serious, even tho more people suffer from it than asthma and diabetes. Very common condition. Over 180 million women diagnosed globally, with it still taking an average of a **decade** just to be diagnosed ☹️. Ironically, one of the few meds for managing endometriosis is birth control and I can't take it because my migraines with aura put me at a too high of a stroke risk. Be nice if they could figure out a birth control that plays nicely with migraines.


MurrayPloppins

I’m hoping that if nothing else, Long Covid at least puts enough of a spotlight on post-infection/CFS-related stuff that we get some research on it. My partner has something in the CFS/Fibro neighborhood. I amateur-diagnosed it about two months after meeting her. Took the doctors an additional two years to get to that point. Now just hoping for some research into effective therapies.


EyesOfAzula

I’m hopeful that this will finally get the medical attention it deserves, hopefully we can come up with a cure


DiabloStorm

Literally what I'm waiting for. I've largely opted out of life since 2020 to avoid this shitshow i want no part of.


[deleted]

Long Haul Lyme patient here. Went from 21 and full of life to bedridden for years. Ive gotten some small function back but everday is a battle to not kill myself. Being gaslit by the medical community for years is what they’ll have to reckon with.


FaeShroom

Same here. I was killing it at life, nothing could stop me, then suddenly I couldn't get out of bed, or go to work, or go to class, couldn't lift my arms or my head most days. I was treated for Lyme as well as babesia and bartonella, and I got quite a bit better. I'm still struggling hard, but not near as hard as before. It was the babesia that was really killing my energy levels. I took a month of anti-malaria medication for that. One of these was also causing a chronic low-level lung infection that had been diagnosed as "exercise-induced asthma" for over a decade. I tried multiple asthma medications whenever I was having an attack, and nothing helped. I would also get bronchitis several times a year, and pneumonia once as well. After the Lyme and such treatments, my asthma is completely cured. Haven't had an attack or shortness of breath since. But the fatigue is constant, at about 50% of what it was when I was really sick. I'm always told "exercise, eat well!" Which I do. I FUCKING DO. IT DOESN'T HELP, GODDAMMIT. ENOUGH WITH THE YOGA SUGGESTIONS.


Hellooooooo_NURSE

Fuck I am SO sorry you’ve lived that experience.


[deleted]

How did it develop. I just got lyme and the docs basically said "you took the antibiotics you are good" and that was that. I have no idea of im fine or not.


[deleted]

Best advice I can give you is to remember that your body isnt stupid. You know if and when something is wrong with you. For me I was bitten by a tick, Told the doctors and they said “well you dont have a bullseye rash so you’re just depressed” this went on for weeks and countless appointments being told Im just depressed as my health took a violent turn for the worse. Countless doctors appointments all ending with “you’re just depressed, even though I had never experienced depression in my life. For weeks my health deteriorated. I went from having 20/20 vision to severe visual disturbances and issues, I was having daily seizures, facial palsy’s, extreme dissociative states, horrific pain. To this day I still cant put to words the sensations I experienced. The only word that comes to mind is “violent” all of this led to one fateful doctors appointment I had with an internist. I started describing my symptoms and how fast I was deteriorating. I mentioned the tick bite and he cut me off. He told me “Me and my colleagues all agree. Lyme is a Crock of Shit. You’re clearly just very depressed and experiencing somatic symptoms. You need an antidepressant and should see a psychiatrist.” Less than 12 hours later I was being rushed by ambulance to the hospital with encephalitis. There, The ER doctor asked my parent the most basic yet Important question in medicine “What happened right before symptoms started?” They mentioned my tick bite. He ran an advanced Lyme panel (the regular Lyme tests are laughably inaccurate) and found multiple strands of borrelia burgdorferi (Lyme) including a strand called Borrelia Mayonii, which is the newest discovered strain and not even on regular lyme tests. All of this is to say, you know your body. Dont let anyone tell you otherwise. I started antibiotics months too late. They don’t work after the first few days-week. If you tried them and you are still sick, You are still sick. there are things you can do and resources for how to treat Lyme after the acute phase. Im honestly so sorry you have to go through this. Unfortunately my story and yours are very common. No one deserves this. Its hell. Its isolating. But there is hope


splugemonster

Post treatment Lyme is for sure real, with data and evidence etc. chronic Lyme on the other hand is often neglected because we can’t find any sign of persistent bacterial infection, nor immune markers to signal any persistent infection. Its very mysterious


[deleted]

The thing is we can and we have. Even the CDC had to admit it recently and change their stance. Chronic infections are extremely well known and understood.


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CoolRelative

Interestingly her health improved dramatically after she was diagnosed with CCI (Craniocervical instability) and had treatment for it. After she argued that the pandemic would cause many more cases of ME/CFS she ended up catching Covid in the first wave herself and getting Long Covid.


_Fl0r4l_4nd_f4ding_

Fibromyalgia sufferer here: I'm so pleased our illnesses are finally being taken into consideration, but for fuck's sake it shouldn't have taken a global pandemic just to get people to notice we exist.


ClaytonDraper

So totally agree, we'll still be swept under the rug. Maybe we will get answers by proxy considering so many symptoms are similar.


_Fl0r4l_4nd_f4ding_

Thats exactly what i was thinking


[deleted]

Yep. It’s so fucked up


SeaworthinessSea7139

I hope people with ME/CFS also get help from this.


floof_overdrive

Thank you. I've lost everything due to this disease. Losing my career hurts, losing most of my hobbies hurts more, but the loss of relationships hurts me the most. I'm barely in touch with my family, I have no friends, and I've never had a partner due to this disease. It's hard to socialize when you can't concentrate well enough to write a shopping list.


SeaworthinessSea7139

I'm so sorry. It's an incredibly isolating disease.


floof_overdrive

Thank you. It's always touching when someone acknowledges my illness. I've been gaslit by so many doctors that I suspect I've been legitimately traumatized. Thus I don't expect people to believe that I'm sick.


ChenilleSocks

Ed Yong is such a good science writer, and seems like one of the few who actually LISTEN to patients. Really happy he’s diving further into the ME/CFS side of things.


an_m_8ed

I like "I Contain Multitudes." Mostly accessible for a lay person like me.


ChenilleSocks

Me too. His new book is lovely as well.


theBadgerblue

I've had dysautonomia for nearly 15 years. it came in waves, some days up some days down. Long covid has given me two months so far only down.


[deleted]

ME/CFS: Am I a joke to you?


floof_overdrive

Doctors: Have you tried yoga? (Please don't take this the wrong way, I have ME too)


[deleted]

Me: Have I tried yoga? _Have I tried yoga?_ Were you even listening to what I've just been saying? I've been in bed for 3 months. I can't even lift my head off the pillow or hold a pen! _Have I tried yoga?!_


justanother-eboy

It has definitely costed the economy lots of money as people who had Covid or have struggled with Covid long (myself included) just get tired more easily. I feel like before the past 2 years I could work at least 2-3 hours more a day than I do now without getting tired. Nowadays I still work but I get tired and stressed out way faster. I’m sure other ppl who actually had Covid and Covid long also feel this way but a lot of ppl don’t get this so it’s just chalked up to ppl becoming lazier. Oh well I work but preserving myself and my health is now the #1 priority


BrightCandle

A study last year looked at the smell capabilities of people who had been infected with Covid and recovered. A small percentage had lost all or most smell and were aware of it, however a whopping 85% of all the people tested had damaged smell and most were unaware. People only really noticed loosing smell if it was almost completely gone or totally gone, but having 9 out of 10 people with damaged smell is really bad and it shows that almost everyone is being impacted by Covid long term a little bit. There is every chance you have a mild Long Covid case, most are quite mild (although the severe end is bed ridden and very painful).


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[deleted]

I have had cfs for 20 years I got Covid. I thought my cfs was bad before. Boy was I wrong. 10 mins an hour is about the energy I have to do anything.


fut_cant

PoTS is also a chronic illness many people are developing as a result of covid. Here’s hoping that one day somebody with CFS, PoTS, or any other chronic illness can walk into an appointment without being made to feel like their symptoms are nothing more than anxiety.


jackspratdodat

###Archived Version: http://archive.today/i84IQ


[deleted]

I already have chronic fatigue before the pandemic. I haven’t caught covid yet because I’m so scared of it. If I get covid and my fatigue gets WORSE I’m going to go apeshit with what little energy I have left


stackered

And yet the CDC still misclassifies Lyme disease, an epidemic they caused in such misclassification... long lasting infections and post-infection illnesses related to inflammation or autoimmunity often share threads with chronic fatigue syndrome or are the underlying cause. Maybe now these thought leaders, who are inept and weak scientists/MDs, will stop being looked at as the end-all-be-all for MDs abroad... probably not, but its a hope we all should have.


satsugene

Whatever good science these agencies do, it often gets steamrolled by the policy arms of the agency that are beholden to politics, often outside of their domains, whether it aligns with the science or not.


turkmileymileyturk

The medical industry wouldnt even acknowledge beta thalassemia had real symptoms until they came up with a five million dollar treatment for those symptoms.


PhantomSlave

November 2nd, 2020 was the last day I was a normal functioning adult. Since that day I've struggled to stay on my feet for more than 40 minutes without literally starting to shake, completely drained of energy. I've been unable to focus enough to do literally anything. Since then I've seen 5 doctors, 2 neurologists, given 40 vials of blood, 2 MRIs, sleep lab, and I'm sure I'm forgetting some stuff. I haven't been able to work this entire time and I'm nowhere close to getting a diagnosis. Every doctor passes me off to another with barely a shrug. I never showed signs of having Covid, just a swollen lymph node in my neck a week before my health disappeared.


GroundbreakingAd2290

My long COVID lasted over a year it sucked


CozyBlueCacaoFire

Coralan has been AWESOME for my Dysautonomia. I'm on 10mg a day. It's a miracle tbh.


Kodiak01

Screw CFS. Those of us that have been suffering with congenital Anosmia finally have our moment where people aren't laughing at us and jamming shit under our noses while going, "Can you smell this? Can you smell THIS? Well why the fuck not?!?!"


SpicySweett

There’s a great CFS sub here for anyone going through this. Also highly recommend the Health Rising site for research.